New Member... possibly. In need of an expert in the field.

[Hope003]

Hi Everybody,

I'm not even sure where to start. I have ARVD/ARVC, Cardiomyopathy. Ventricular Tachycardia. Heart Failure, DVT's, Pulmonary Hypertension and my docs thought this was all from the ARVD.
Blood tests in the past showed no clotting disorder but every time they took me off Coumadin I threw another clot. So lifetime Coumadin now. I've had lower back pain for 2 yrs and kept telling my internist something was wrong. He took some x-rays and told me everything was fine and dismissed it. I have recurrent bouts of pleurisy and cough up blood. I have been to the Cardiologist, who sent me to the lung doc, who told me maybe asthma and gave me some inhalers. He told me it was my heart and back to the Cardiologist I went. He sent me to my PC, who kept telling me, I don't know what to do with you and would throw his hands in the air. He blamed my HF and increased my water pill which really made me sick. This has been going on for years and finally I was so sick and weak sitting in my Cardiologist's office this May. He said, Why isn't anyone checking into your Pleurisy and why you keep coughing up blood. I sat there and shrugged my shoulders. He said, I want you to go to the PC and tell him to run some blood and check for Vasculitis. I did and my PC asked me what tests he should run. I asked him to please call my Cardio and ask him. So frustrating! Anyway I finally had the tests done.

My ANA was a little high and he told me it's probably nothing. He said my ANCA's are elevated and when I asked what that was for he snapped at me and told me to call a Rheumatologist, he doesn't know. I was done with that PC. I did go to a Rheumy and he ran his own tests. ANA, Lupus,... You all know. They were neg but the Anca's are all positive. He mentioned a lung biopsy to me and told me to go to my lung doc and ask. My lung doc said I had some scarring and inflammation but nothing to biopsy. He told me to go see an ENT and let them do the biopsy. So I went to the ENT, he checked me and found a granuloma on my voice box. He said it is not related and is probably from GERD. He even did a CT scan and told me I had broke my nose in the past! My eyes went wide! I didn't even know. LOL Anyway he didn't find anything suspicious in my mouth or nose.

I called my cardio that Friday because I was very SOB and having bad chest pains. he said go to the hospital. I did not! I have V-tach! So when I go to the hospital, it's all they see and panic! My breathing has been getting worse as well as the chest pain. I went back to the lung doc on Monday. He put the pulse ox on me and the nurse walked with me as I told her I was having trouble breathing. she kept showing me the reading. 99%. I kept telling her I can't breathe and she let me sit down. My heart rate went up to 140 and my 02 dropped to 90% I was having a hard time breathing. The lung doc told me it's not low enough to get me oxygen. I have to be at 88 or 89%. My head was spinning at this point.

I went back to the Rheumy, who wondered what happened to me since May. I developed Bronchitis and the lung doc had to put me on prednisone to help me breathe. I just came off the prednisone late August and the Rheumy realized the second set of tests he ran was when I was on the prednisone. And they all came back negative. He just repeated the test last Monday and He said the ANA and lupus were negative and the ANCA's positive again and this time higher. He wants me to start on Plaqunil for the pleurisy and Methotrexate. I'm just so confused in all this and I really need a good doc to help me figure this all out.
I thank God for my cardiologist! He never gave up on me and always spoke the truth. He explained I have HF and VT and PH and all but he didn't think it was severe enough to be causing all my symptoms. All this time we thought it was my heart and now I would love to find out it's not and there may be a treatment to help me feel better! : )

I have SOB, chest pain, recurrent pleurisy, hearing loss and ear infections, eye pain and burning, (This is new) Liver pain, back pain, nose bleeds, unintended weight loss and just feel really weak. Oh and I don't think it has anything to do with this but a few months ago my feet were killing me! I actually went to the foot doc because it hurt to walk on them. It felt like really bad cramping, so strange.

I live in NY, Long Island if anyone knows of a good doc? PC too! :rolleyes1: I'm open to all advice.
I thank you all for listening and being so bold as to share your stories on this board. As I sit here and type this I realize it's a Godsend... for many!
Thank you Andrew for encouraging me to share!
Thank you All!

Blessings,

Hope003

[MaxD]

Hope,

See Dr. Robert Spiera in Manhattan, he's one of the top experts. He works closely with Dr. Robert Lebovics - a top ENT specializing in Wegener's, also in Manhattan. They're both wonderful people too. If you don't get an appointment right away, have your doctor call their office to get you in soon.

You can find list of specialists in Wegener's at Vasculitis Foundation (http://www.vasculitisfoundation.org)

Good luck, and keep in touch.

[Hope003]

Thank you Very much MaxD. I appreciate all your help and information.

I'll keep in touch! : )

[Birdie]

I'm not even sure where to start.

You did a terrific job of explaining what you've been thru, expecially for not knowing where to start. Sorry I don't have any great insight. I just wanted to say that your story is typical of many cases of Wegeners in that nobody really knows what's wrong and the patient is numb with frustration. I was fortunate because it only took five months to get past that stage.

If you've got ANCA's then the next step for a firm Wegeners diagnosis is a specific type of granuloma in a tissue biopsy. Many patients don't get either of those, resulting in a more difficult diagnosis and a much higher frustration factor.

Don't relax, find doctors you can work with as soon as possible.

[Hope003]

Thank you Birdie! :biggrin1:
I'm thinking of trying the NY doc or JHH, only because they helped me in the past.
My Cardio has me going in for another Right Heart Cath and it's hard because I can't breathe as it is and when they lay me flat... Oh Boy! LOL I'm laughing because I remember that line from, Quantum leap! Ohhhhh Boy!
I can't imagine having Wegeners and ARVD! Two rare diseases! I think my Cardio feels the same. My potassium keeps dropping also and we are not sure why. Does anyone have low Potassium, Chest pain and SOB? And low Sats?
Thanks again for your help and support. I'm going one day at a time and trusting God as He puts the pieces of the puzzle together for me. :biggrin1:

[Birdie]

I can't imagine having Wegeners and ARVD! Two rare diseases! I think my Cardio feels the same.

When first diagnosed I found a web site with a database of case studies. Not limited to Wegeners, it was a challenge to navigate. I found and read hundreds of Wegeners case studies. Well over half of those case studies were given more than one incorrect diagnosis before the Wegeners diagnosis. Most of those cases took years to get to Wegeners treatment and were in bad shape by that time.

I have a long list of things I was told I have... they were all side effects & damage from Wegeners or the treatment for it. Such is the case for the damage to my heart. When the heart issue showed up, it would not have been attributed to Wegeners if I had not already been diagnosed with Wegeners. I'd have some other heart related diagnosis.

So I learned the lesson right from the start, a diagnosis is not reality. From my experience it's wise to doubt. It's wise to get more than one opinion.

[Hope003]

Well I had the RHC and the docs do not think that my shortness of breath is coming from my CHF or PH. I have Mild PH I' being treated and on the story goes. This is all beginning to frustrate me... a lot!
I'm exhausted to the point I wake up and want to go back to bed! Dressing and taking a shower are becoming increasingly difficult and I never felt this weak before. I found a new PC, and he just happens to be a Nephrologist.
He is doing another work up, my fourth. I did my best to explain my exhaustion and weakness and he said, I look good. I asked him if there is anything I can do or take, for relief. He said no but if you looked bad I would give you something right now! Is it me or what. I have to look bad to get treatment?! Sigh! He also explained if it is Vasculitis, I could be gone in under 2 yrs then goes on to say that the medication could kill me as well! :blink: I have to have a sense of humor and say, that emoji, is exactly how I must have looked! Then he says, we need to know. I sat there stunned. I told him my Pulmonologist told me to get a second opinion and he immediately said no and told me he knows what he's doing, this is his field. So... I'm going to Manhattan to see Dr. Spiera on the 19th. I praying and hoping he can shed some light on all of this and possibly diagnose and help me. I was told to bring my medical records, any tests and biopsies I had done. From all I'm reading and learning, biopsy sounds like the only way to DX this disease? Is that correct? Isn't there any other non invasive way?

Thank you for giving me Dr Spiera's name, and for all your help!

Blessings!!!

[annekat]

Welcome to the forum, I have nothing much to add but am glad you are here! Come here any time to ask questions, tell stories, or vent, and use the search function. Add your name to the Weggie members map highlighted in blue at top of page, and see the distribution of members all over the world. I'm glad you got an appointment with Dr. Spiera so quickly! There are videos of him talking on youTube if you should feel inclined to look. Let us know how that goes and if you get a real dx!

[Birdie]

I told him my Pulmonologist told me to get a second opinion and he immediately said no and told me he knows what he's doing, this is his field. So... I'm going to Manhattan to see Dr. Spiera on the 19th.

I would run out of the office to find another doctor as soon as a doctor did anything but encourage me to get another opinion. You done good by going elsewhere without even using the first doctor for a refferal.


From all I'm reading and learning, biopsy sounds like the only way to DX this disease? Is that correct? Isn't there any other non invasive way?

You said in your first post that your ANCA's are high. Assuming that means c-ANCA, then you already have more indication of Wegener's than many patients ever get. A small percentage of people have a natural c-ANCA level. If you're not one of those people then the c-ANCA is likely caused by Wegener's.

Granuloma in a tissue biopsy can confirm Wegener's beyond doubt. There are a number of slightly different types of granuloma with different causes. They can be distinguished in the lab, each type can be positively identified. The Wegener's type of granuloma is only known to be caused by two things, Wegener's or pyostomatitis vegetans (associated with ulcerative colitis).

So... the most positive diagnosis is with both, c-ANCA and granuloma. No c-ANCA means nothing since many Weggies never produce it. No granuloma means nothing since it may have been missed in the tissue grab, or a dumb lab may not have known what it was looking at, or, or, or, ???. Negative result does not rule out Wegeners.

So you have reason to have hope... you're going to see a specialist who knows far better than any of us. You being educated on the subject now means you'll better understand what the expert say's, instead of having to decide if he knows what he's talking about (should I run away from this guy?).

[MaxD]

Hope,

Glad to hear you're seeing Dr Spiera next week. I would suggest writing notes of everything you can recall from your complicated history - Dr Spiera always spends time listening closely to patients, even before going through the medical records. So you wouldn't want to forget anything important. If you have someone accompanying you (highly recommended), have them take notes at the meeting after he examines you.

Good luck to you!

[Hope003]

Hey Thanks Annekat, Birdie and MaxD! :biggrin1:

I don't want to put myself on the map just yet, with the HOPE it's not Wegs! I hope that's okay?
I had 5 blood work ups now. 3 Positive for C-ANCA and P-ANCA 1 negative but the docs thinks it was because I was on prednisone and had a bad case of Bronchitis and Pleurisy. 1 pending with the new PC, who I do want to run away from! Birdie just as you said, I did think, "I need to get out of here now!" I am just so tired of changing PC docs and starting all over again! I'm really hoping Dr. Spiera can help. My Rheumy called and asked why I did not start the meds yet. He gave me Plaqunil and Methotraxte... and said it could takes months before it starts to work. I told him I was going to get another opinion. My question is, if I do starts the meds, would they affect future blood tests or results in any way. I'm just looking for some relief! I'm exhausted and have been sleeping sooo much! I just want my energy back! I wake up and my brain is saying go, go ,go and my body can never seem to catch up! I'm trying, I'm pushing myself to just get up, get dressed and go, and by that time I'm ready to collapse! My Cardiologist is telling me to exercise, my Rheumy is telling me to rest and my new PC says I look fine! I'm praying and hoping, God uses Dr. Spiera to help me. Hey, maybe he knows of a good PC on Long Island.

Thanks again everyone! You have all been very welcoming, caring and encouraging!

Blessings!

[Hope003]

I saw Dr. Spiera today and at first he said he didn't think it was wegs then I showed him some pictures of my eyes and I think he still was unsure. He went and looked my medical records over then came back in the room and said he thinks it is wegs. He corrected me and said we don't call it that anymore and said Granulomatosis. Or GPA. Anyway he explained I'm not presenting as the typical wegs patient does. He said my CT scan shows a tree and bud pattern in my lungs and mentioned maybe I should have another done. I had 2 and my lung doc said it was just a little dirt, unclear. He did a second and we got the same result with the tree and bud pattern. I shared my chief complaint is exhaustion! The SOB, & chest pains feel more intense and my heart started racing. My eyes hurt and are burning and bloodshot at times. He said they were inflamed and called it Scleritis. I can't express how good it feels when the doctor you are seeing is on the same page as you! I sat there thanking God, and all of you who referred me to Dr. Spiera. He took more blood and said doing a biopsy would be dangerous for me. He told me he's going to talk to some other docs about my case because it's complicated and call me on Monday. He mentioned putting me on Rituxan IV. He said it was much safer than the Cytoxan and I would probably only need 4 or 5 infusions. He said it could possibly cure me! That was a Huge surprise because my last doc told me if this is vasculitis, I could have less than two yrs to live. What a difference in prognosis!!! So what do you all think about the Rituxan? I'm just wondering how this is going to affect my heart and other meds I'm taking.

Thanks and blessings to all!

[woz]

Rituxan is just as good as cytoxan, if not better, and has a lot less side effects, it was used as a last resort med when it first came out, but is used more as a first response med, due to better results, all the best, read some of the posts on rituxan/rituximab/mabthera/zytux, all the same drug.

Regards Woz...

[drz]

RTX works slower than CTX and it is hard to adjust the dosage if you have any serious side effects when getting an infusion, but generally most people tolerate RTX well and it has far less side effects than CTX so it is commonly used today as primary maintenance treatment for many people that need something a bit more potent than MTX or AZA or similar drugs or those who had serious side effects from these drugs.

Go for it!

[MaxD]

Hope,

I am so glad to hear that you saw Dr Spiera and had a good experience. Not only is he an expert, but he's warm and not driven by his ego. You can be certain that he will consult with other experts before and after treatment.

I was treated with Rituxan last year and it brought me into remission; since then I've had one infusion for maintenance last March, and another is likely within the next few months. It has minimal side effects - in fact, none that I noticed and the infusions are painless. The Benadryl prior to the infusion will make you sleepy and relaxed while the Solumedrol may keep you awake and hyper. This will pass by the next morning. Just to nitpick, Rituxan will not cure you of GPA, but help bring it under control. Very glad that you do not need a biopsy!

Did you ask Dr Spiera to recommend a physician close to where you live? He works very well with my local rheumatologist who I see every couple of months and I see Dr Spiera every 4-6 months.

All the best to you, and hope you are on the road to feeling better soon!

[annekat]

Hope003, there is no requirement, ever, to put yourself on the map. Anyone can go there just to see the distribution of WG around the world. BTW, a lot of us still call it WG, even some docs, even though the official name is now GPA. It is a personal choice, and eventually, WG may fall by the wayside and we'll all be calling it GPA. But try explaining to a friend what GPA stands for and what it means. WG is a little easier to say, explain, and remember.

An expert of the caliber of Dr. Spiera is qualified to diagnose GPA without a conclusive biopsy and little or no ANCA reading, and get you started on treatment right away so it will start to help you. You are lucky to have been able to see him, and things are on the right track. Let us know how it goes.

[Birdie]

What a difference in prognosis!!!

Yipeeeeee!

[Hope003]

Hi Everybody!

Thank you ALL very much! You are all sharing and encouraging me greatly! I really appreciate you all.

I started reading about Rituxan and became concerned with all the side effects. Especially since I'm on so many meds for my heart condition. I read they may have to take me off my beta blockers and that would be a huge problem but I'm jumping ahead and I know that now. :biggrin1:

Dr. Spiera said he was going to talk to some of his colleagues and my docs too. He said he was going to set everything up for me and now I have a lot of hope and questions.

Hope that he can set me up out here on the island where I live. I don't drive and it would be hard to go back into the city for treatments.
Also do you need to have someone go with you for the infusions? I was thinking I could always take the bus in and home.
Has anyone been hospitalized for the infusions because of other conditions they have. Like heart or lung problems? Do they monitor your heart during the infusions? I have Vtach daily and don't want to put the nurses in shock!
Do they give IV Saline with the meds?

And this is a biggie. I have been thinking on this a lot. The doc mentioned if you are taking Cocaine you can get positive ANCA's. Besides almost falling off the table when he asked me... I guess I'm now questioning all the medications I take for my heart and lungs. I'm wondering if any of these meds could cause a positive ANCA result. I mean how would they know it's not coming from all the meds I take?

Did I say, Thank You! :biggrin1:

Blessings!

[Pete]

With respect to rituxin, most people have few side effects. The first infusion is given very slowly to make sure you aren't allergic to it, so expect to be there 5-6 hours. After that, they usually take 4-5 hours assuming no issues. The infusions are given in saline solution. The rituxin dosage is usually no more than a gram (1000 mg) in 300 ml of saline. You will also probably receive some solu medrol and some benedryl to prevent allergic reactions. You may want to have someone go with you to the first one to make sure you have a way home if there is an issue. After that, you could probably take the bus. I've been able to drive home from all of my rituxin infusions with no problem.

I did all my infusions as an outpatient. They take your vital signs hourly while the infusion is in progress. I would mention your Vtach to your doc and to the nurses.

As for the ANCA question, you may want to run that by your docs.

Since Dr Spiera is treating you, I would take his word as gospel.

Good luck!!

[Hope003]

Thanks so much Pete!

[Birdie]

The doc mentioned if you are taking Cocaine you can get positive ANCA's.

A quick search makes me think it's p-ANCA rather than c-ANCA, and not truly from the cocaine but another drug sometimes added to cocaine. That's if everything on the internet is true.

[MaxD]

Hope,

I'm sure Dr Spiera will arrange to have you closely monitored through the infusions. But be sure to remind the nurses about all your medications and symptoms nonetheless. You should expect a shot of benadryl and one of solumedrol (a steroid) prior to the infusion of Rituxan which is diluted in a saline solution.

As for the Rituxan, you shouldn't suffer any side-effects. But the Benadryl will make you drowsy so if someone can accompany you home that would be ideal. If not, you should plan to stay in the waiting room of the infusion center for some time until you are sure that you are steady on your feet.

The question about cocaine is standard - regular use can cause symptoms similar to GPA and it's important to rule that out in diagnosis.

Great to see you in good cheer and looking ahead. Lots to give thanks for this season!

Keep in touch, and all the best.

[Hope003]

Thank you All very much for your advice and help.

This is getting really frustrating. Dr. Spiera called and my ANCA's are negative, which I thought was great but he didn't. He said he's seeing some changes on my CT Scan in May, June and Sept. He said he's ready to pull the trigger on the Rituxen! I was stunned! I feel unsure and my Cardiologist is also... not convinced it's Wegs. Although he did say, I do have the symptoms, my CT is abnormal, they can't explain my shortness of breath... he admitted if it walks like a duck, talks like a duck... must be a duck! I've been seeing him for over 16 yrs and I trust him! And I mean, TRUST him! He saved my life numerous times when other doctors failed to pick up on my symptoms. So My Cardiologist told me he doesn't know much about Wegs but spoke with Dr. Spiera about everything. He said to me, he doesn't want to say don't take the Rituxen because if it is Wegs and I'm dying a few months later... Not good. So he asked, can you hang in there 1 more month? 1 more month and give the inflammation time to go down in your lungs. If it doesn't get better, or it gets worse, we have our answer. He doesn't like the Rituxen at all for me. He was not happy. When he's not happy... that makes me nervous! On a side note, they both agreed a biopsy is completely out of the question! It's a start I guess.
I have to call Dr. Spiera back on Monday. My doc was asking if maybe the doc can start me off on something less potent? The Bendryl is going to make my heart race, the steroids are go to cause fluid retention and send me right back into CHF. And there is talk that I may have to come off my beta blockers, which kept my Vtach below 200 BPM. This is a complete mess! On top of this, the GI doc thinks I have a stone in my bile duct and they will be going in to look on Monday at the hospital. He said I may need a ERCP. I'm praying it's a stone and ALL my symptoms go away!!! :biggrin1:

Yes! I am thankful! Very thankful to God for leading me to this board and all of you!

Happy and Blessed Thanksgiving everybody! :biggrin1:

[Aneinu]

Our hearts and prayers are with you. May God bless. As an aside, what is the danger in the skin biopsy? Stay strong please.

Sent from my SM-G920V using Tapatalk

[MaxD]

Hope, Here's wishing you all the best. It's a very tough situation that you're in, both with your health and the uncertainty around diagnosis. It must be gut wrenching, not knowing if the treatment will solve one issue and make another worse, while not proceeding may be a worse option still. On the plus side, you have competent docs who you have faith in, who are looking out for you, and are communicating with each other. Let them know all your fears to remind them they're treating a person and not only a complex mix of diseases. Everyone here is rooting for you!

[Birdie]

This is getting really frustrating.

Wow, I understand the frustration.

You obviously have a couple things working in your favor. First is good health care and second, maybe as important, you have a very good understanding of the situation. Keep studying everything involved so you can make the best choices. Don't ignore any changes and don't hesitate to use the emergency room.

[annekat]

It's not uncommon to have a negative ANCA reading and still have Wegs. I'm sure Dr. Spiera knows this. It seems you might be more afraid of the things that are given along with RTX than of the drug itself. CTX is an alternative that is just as potent as RTX and has its own set of risks, as do all the meds, but is usually, though not always, given in oral pill form with no need for benadryl or a heavy dose of IV steroids at the same time. You might not need to be on it longer than 3-6months and could then switch to something milder. You would still need oral steroids in the form of prednisone, but not the heavy dose at one time like you'd get with RTX. There's really no need for me to say all this, as Dr. Spiera is a top doc who no doubt has thought of this. I just wanted to point out that the CTX worked fast and effectively on my lung involvement, which was clearly seen on a CT scan. I have little or no understanding of your additional issues involving your heart and other issues or how any treatment for Wegs would complicate them. You are in the hands of two excellent doctors and I guess will likely go with the plan that they agree on. Many of us are afraid of the meds before we get them and they turn out not to be so bad, and end up saving our lives. If you are administered RTX under the watch of Dr. Spiera, with your cardiologist close at hand, I'd think you'd have a lot less to worry about than any of us without such good docs. Best wishes to you in dealing with this situation and coming to terms with it. We are all pulling for you!

[Jaha]

I welcome you to the forum and am wishing you all the best with treatment. I am one of the 20% of Wegs patients whom are ANCA neg. It took almost 7 mos. to get a dx after having an open lung biopsy, at a local small hospital. I self referred to CC and they sent for the biopsy and dx'ed me. I guess my point is, your cardiac problems could be caused by Wegs and it is good that you have both docs working on your case now. You have come this far and they will figure you out, but just don't discount the Wegs guy, because I bet he has seen lots of patients with cardiac problems. All the best to you.

[drz]

Generally most people have few problems with RTX but my experts at Mayo also believe to defer it until it is certain that is really needed. Their thinking is that it might tend to become less effective from repeated use so best to save it for a serious situation. Hope things do get better. Other problems like infections or other health issues can cause increase in Weg symptoms and other symptoms. These usually do dissipate in few weeks or when the other problems are resolved.

[Hope003]

Wow! Thank you ALL for encouraging and helping me along.

I had the Procedure and the doc said there was no stone in my bile duct but found Polyps in my stomach! 50 to 100! He removed a few and I'm waiting on the biopsy results this Friday. He said he thinks the polyps are caused by the acid reflux medication, Protonix. He took me off it and I have been really sick to my stomach since Monday! I called a few days later and he put me on Pepcid... I felt worse! Today he told me to go back on Protonix. I was stunned and even questioned him. He told me to come in for an appointment.
Dr. Spiera spoke to all my docs and none agree with him! Actually one, my cardiologist is open to what Dr. Spiera is saying. Dr. Spiera asked me to see the ENT. Dr. Lebovics, if I spelled that right. I'm going in tomorrow and I'm hoping he may shed some light on all of this. Dr Spiera asked me to do three things. See the ENT, Send him my biopsy report when it comes in and get another CT Scan in 1 month. He wants to see if anything changes or gets worse in my lungs. My cardiologist was the one who told me to hang in for 1 more month then get the CT scan and Dr. Spiera agreed! It's crazy that none of my docs agree and it's giving me doubt! I have to try and stay well for the next month and my Cardio told me to get the flu and pneumonia shot! My lung doc said because my immune system is compromised I could get an infection. That would cause my lungs to get inflamed all over again and then the CT scan would not be accurate! This is like a vicious cycle!
What is the lest dangerous med or a starter medication used to treat Wegs?

Thanks again everybody!

God bless you All!

[MikeG-2012]

Dr. Lebovics, being a wegs expert, can certainly get you on the right path to your treatment. After meeting him in Jacksonville this summer, I believe you are in good hands with him. Ask him for a referral to doctors, who know about this disease, who can take over managing your care.

[MaxD]

Hope,

Dr Lebovics is a Wegs expert, and has shared several hundred patients with Dr Spiera (I'm fortunate to be one of them). Clearly, your case is very complicated - not unusual for Wegs - but you are in competent and caring hands, between your cardiologist, Dr Spiera and Dr Lebovics. Hang in there.

Oh, and before you are treated for Wegs (if so diagnosed), Dr Spiera will ask you to get both flu and pneumonia shots - unless you are already highly immuno-compromised, which he will check. But you have been off prednisone for a few months now, so it shouldn't be an issue.

As for the polyps, let's hope it's nothing. Protonix taken over a long term do cause polyps, but they're generally small. It's good your doc put you back on protonix to give you relief and that you're seeing him soon.

Hang in there, even though all this must be so agonizing. On the bright side - hey, no stones!

[Jaha]

Hope,
I am wishing you all the best with the biopsy to be benign. I found out in March that I also have polyps in my stomach, they say it is from Protonix and they will leave them alone for now. I am still have abdominal pain and now they are ordering some other tests. I hope you get an answer soon on what is going on in your lungs. Take care

[drz]

The two recognized experts should be able to agree upon a treatment plan that is appropriate for your symptoms. They should also be able to find you a local resource that will follow and implement their suggestions.

I have been on Protonix for many years at a double dosage and never been told I have polyps but don't remember eve being checked for them either. What symptoms do they cause if any?

[Hope003]

Hi everyone,

I'm still kinda stuck in limbo and waiting to see if my Lungs heal or get worse.
The biopsy results were benign. Thank you God!
I have been breathing better n a bit more energetic now, which is great!
Im hopeful it's not Wegs because I feel better at times, especially after I rest.
My eyes are acting up. Scleritis n inflammation. Dr. Spiera wants me to go to the city
again. He gave me the name of an eye doc now too. I'm going to ask who else he wants me to
see while I'm there! Lol
Are there times you feel better n have more energy with Wegs?
Wishing you all a blessed, happy n healthy New Year!!!
Thank you all for the encouragement n support!
: )

[Birdie]

The biopsy results were benign.

Im hopeful it's not Wegs because I feel better at times, especially after I rest.

My eyes are acting up. Scleritis n inflammation.

Are there times you feel better n have more energy with Wegs?

By "benign" did you mean they found no granuloma? Even if that's the case you could still have Wegener's. Which you probably already knew. Random fatigue is a major symptom of Wegener's and scleritis is fairly common.

Far too many patients take years to get treatment, because it's so difficult to diagnose. Stay on top of it, push hard for a solid diagnosis as fast as possible.

[Debbie C]

I have been on Protonix for many years at a double dosage and never been told I have polyps but don't remember eve being checked for them either. What symptoms do they cause if any?

I am also taking Protonix and haven't heard of it causing polyps...do they tell from an endoscopy ,cuz I had one done last year and he didn't mention anything ???????????

[debra]

Deb, they don't tell sometimes, you need to ask? Crazy right? If you had any, they would have zapped em, or whatever they do, and send off to a lab to biopsy them to make sure there not cancerous. I wasnt aware I had any from an endoscopy I had in 2012. Later all my symptoms came forth, like a bat out of Hell! This is what brought my Wg, out of hiding. Hi, Hope, happy, healthy new year. Hope, can't answer, as I feel equally like crap, day to day... Scleritis, please stay on top of, as this is dangerous and painful. May also help seal you're diagnosis.... Good luck! Deb.

[Hope003]

I had the report sent to Dr Spiera but I honestly don't know. I'm going to call today now that you mentioned this.
I should know to ask these questions myself but I feel like I'm so done with all these docs and tests and no answers.
Thank you Birdie!

I developed pleurisy again last Friday. I'm back on prednisone and have been having ongoing problems with my eyes.
Dr. Spiera sent me to Dr. Latkaney! Oh my Gosh!!! He is sooooo nice and calm and doesn't rush or make you feel like your nuts! :)
Anyway He found Scletritis, said I have something called Sjogrens disease but he said nothing catastrophic! Thank God! He said he sees damage behind my eyes but he thinks its from lack of oxygen when I have Vtach that the oxygen can't make it to my organs.
So does anyone have Sjogrens? It looks like it's all auto immune related and it's either going to be Plaqunil or Rituxan.
Oh and the docs never told me that protonic could cause polyps. And i'm back on it! I'm tired of being tired, on all these meds!
Thank you all.

[debra]

Hi Hope! Hope in the beginning, for two year's or so, I had the symptoms of Sjogrens? Spelling? I had 0 tears, no saliva, ect, ect. Eyes were bad, doc wanted to put me on restasis, I think that's the name, was a while ago so trying to recall... I think there were some side effects with these, that I decided against using them, along with cost! Then talk of doc, putting something in my eyes, surgical... Hope the good news here, is it resolved on its own, strangely enough... Have tears again, mouth gets dry, but no where near that! Eyes not dry, just left changing all the time, and blurred with distance ect... Hope, any autoimmune disease likes to gather friend's! You're body becomes a little house party for them... And the polyps are common and usually benine... Good luck Hope, I understand you're frusteration, believe me!!! Deb...

[drz]

My sister has Sjogren's or some kind of similar autoimmune disorder since diagnosis of our autoimmune diseases is often imprecise and difficult to pin down.

I also developed some vision disturbance in my right eye right before my hernia repair. It was dilated and examined and nothing abnormal showed up but vision became dimmer and more cloudy. Sort of like looking through a dirty lens except it is clear according to optometrist who examined me. I have had diabetes for decades and think it might be related to some thing in optic nerve area but need to wait for further exam by regular ophthalmologist who has pix from previous exams to sort it out.

[spiritscript]

My sister has Sjogren's or some kind of similar autoimmune disorder since diagnosis of our autoimmune diseases is often imprecise and difficult to pin down.

I also developed some vision disturbance in my right eye right before my hernia repair. It was dilated and examined and nothing abnormal showed up but vision became dimmer and more cloudy. Sort of like looking through a dirty lens except it is clear according to optometrist who examined me. I have had diabetes for decades and think it might be related to some thing in optic nerve area but need to wait for further exam by regular ophthalmologist who has pix from previous exams to sort it out.
Optic Neuritis is also a part of MS. It is swelling and causes dimmed vision. Also, my eye check up shows as normal but I don't think it is. I also have Sjogrens. I hope your further exam is soon.

[debra]

Spiritscript, hi again... Did you're sjogrens start after the wegeners? Just curious, because I showed signs in the dirt couple years, but then improved on its own? Didn't even have tears, for a couple years... Weird... Nice seeing you! Deb...

[debra]

Dirt! Is first! Man, give me a break!

[Hope003]

I still don't know if it's Wegs. I think Dr. Spiera thinks it is but nothing is conclusive yet. My Anca's were positive then negative and we can't rely on those. The ENT didn't find anything, thank God. Even the eye doc said he doesn't see anything terrible. No active inflammation at that moment but I showed him some pics of my eyes and he called it scleritis, then found the sjogrens. The thing is I developed pleurisy again and feel horrible. I went to my heart doc last week and he said I now have Pericarditis too. He said it's highly uncommon to have both pleurisy and pericarditis at the same time. He told me the docs probably won't be able to DX me because I don't fit into any of their categories but what matters is they treat me for the symptoms I am having at that time. I have to be honest, I felt so much better when he said this. I think for me, I can get caught up with the, what is it? What is it thing! Now I'm just hoping the docs can treat me for some unknown auto-immune and anti-inflammatory process that is clearly going on in my body. Dr. Spiera told me to start Plaqunil two weeks ago and I held off not feeling good about it. Turns out he called me a few days ago and asked if I took it. I said no and he said good. The eye doc thinks something may be wrong with my Retina to hold off. Somehow God still has me smiling and pressing on in all this mess. And I'm very thankful to all of you, who are very encouraging and caring enough to help me!

I have to go for a CT of my lungs to see if anything progressed.
A CT of my brain and an Angiogram of my eyes... I'm wondering what they could possibly test me for next! : )

Thanking God for each of you!

[Pete]

Hi Hope,

(Interesting greeting - rhymes with high hope) For what it's worth, I was diagnosed by a process of elimination. After five days in hospital with symptoms of an ear infection that wasn't responding to conventional treatment, crushing fatigue, loss of appetite, and some odd looking things in my lungs, they did a nasal biopsy and a bronchoscopy to see what was going on. The ENT who did the nasal biopsy found some granulomas that they thought could be GPA, but the sample was too small to be conclusive. After that, though, they had ruled out everything else and had no other dx except GPA. I asked how they would get a conclusive dx and the response was open lung biopsy - meaning another week in the hospital. I elected to start treatment for GPA including 150 mg/day oral cytoxan, 60 mg/day prednisone, bactrim daily. Fortunately, I responded well, as I didn't want to think about what would happen if I didn't respond to this treatment regimen.

I've not had eye involvement with GPA. Had minor kidney involvement 3+ years ago that cleared up with a round of rituximab. The lungs have pretty much healed. The right ear was pretty badly clobbered, and I don't think my eustachian tube on that side works right as I have a bit of popping and gurgling in my ear. (I hear OK with hearing aids.)

The best advice I can give you is what the docs who dxed me said: Take your meds as directed and live your life as fully as you can. Five years in, the advice is working.

Good luck!!

[jlove]

Hi Hope! I just read through your posts. I'm sorry you are having a difficult time figuring out what's going on. I remember being in that spot, where you know something is happening and you just want to put a label on what it is. I went into every test with some anticipation because I felt like I never knew what would show up and what would be noteworthy to my doctors. Let us know what happens with your testing!

I was ANCA negative and wasn't diagnosed for a while because just subglottal stenosis and an orbital pseudotumor alone aren't enough to make a Wegs diagnosis. I remember meeting with my old rheumatologist and expressing immense frustration at my lack of a diagnosis and he basically told me "tough luck, wait for another symptom to develop." I was so mad at him, I didn't make my next appointment and I found another rheumatologist later when my third symptom eventually developed. It sounds like you have some great doctors and you are doing all that you can to take care of yourself and find out what you have. I too hope the end result for you isn't Wegs but, if it is, I can tell you it's a relief either way just to know for sure what you have. I can also be a very impatient person, though, so the waiting game was just not my style. It's different for everyone but we are here for you!

Pete, you reminded me of the song "High Hopes." I consider it good luck every time I hear it now because the last time I heard it performed was when the Phillies won the World Series in 2008.

https://www.youtube.com/watch?v=4VMOkpm3eoA

(Skip to 1:10 for the song, especially if you're a Mets, Brewers, Dodgers, or Rays fan :smile1: )

[debra]

Hope, good for you, God is still finding ways for you to smile, through all the crap, pretty awesome huh? Hope, don't get to comfortable with the ones who are ruling out wegeners, so much. I allowed this in the beginning, cause its so, what I wanted to hear! But my gut, kept telling me no... Oh, how I wish I had always listened to my gut instinct in life, as it has NEVER failed me, unfortunately I failed it... Hope, the scleritis is the smoking gun, that led me to finding wegeners, thanks to the on call emergency eye doctor, who looked completely horrified, after my exam, when he said, please see you're doctor, because this is autoimmune... Then started my golden eye drops, pred forte every waking hour!!! With a very slow taper, next day repo hour intervals, ect... Saw the eye doctor so much, he had my coffee poured when he saw me getting out of my car, making my way in... So did the er! There so much in the first two years, I actually started going to the other er, cause I was so embarrassed! They made me think I was a hypochondriac. I was not, and am not... Scleritis, is a very rare, very serious eye disease caused by wegeners granulomatosis, this was the headline on medscape, I read back in 2012, and when looking, bingo, every symptom right there... All came on suddenly, and had most by week two, after a minor surgical procedure, an endoscopy... Was there just waiting for a streeso, sorry, stress! To show its very ugly head... Hope, keep on, and I will as well, and keep you're faith... Sorry for typos, but it is me, and something's just don't change... Deb...

[debra]

Jlove, you're posts are amazing, so thank you for that... I hope you keep posting, as all you're posts are very helpful... Thank you, for taking this time to do this... Debra...

[Hope003]

Thank you All! :smile1:

Thank you Pete, your song, had me cracking up! highhhh hopes, he's got high hopes! Yes I do! :hug3:

Jlove and Debra, Thank you. The Scleritis started in December. I never had anything like that and the eye doc just said it's inflammation and can be cause by anything.
I'm just resting best I can with the steroids. I feel like the pleurisy is getting better and I'm hoping the pericarditis is too. The Prednisone has me so hyper then crashing hard! I hate these pills but I'm thanking God they do help!

[debra]

Hope, good luck! I'm glad they help... Deb...

[Hope003]

Hi Everybody,

Well... It seems the experts are unsure even with all my tests. I'm feeling worse and was allergic to the Plaquenil, that was supposed to help with the pleurisy. My urine is now showing protein, which it never has before. They found osteo arthritis from head to toe and inflammation only in one ankle. The doc said the test was done while I was on prednisone and he would like to see it when I am off the med but I just developed pleurisy again, after being off prednisone for only 3 weeks. They don't want to give me Rituxan and said Metho and pred will not help me. (How does he know that, we haven't even tried it.) I have to say this gets really frustrating. All these tests and all these docs! Dr Spiera has advised me to go to the Cleveland Clinic and see Dr. Alexandra villa forte. I'm trying to figure out how they will be any different there. I have been to all the experts here in NY and all the best hospitals. I would feel really uncomfortable going to doctors who don't know me and my medical history! I have a rare heart condition, DVT's, HF, Pulmonary hypertension, Pineal cysts on the brain, now just told I have 4th cranial nerve palsy yesterday. I'm getting bad headaches, seeing double, scleritis in my eyes, pressure in my head. The Neuro said it could be from the pineal cyst, 1.5 cm, or wegs, he is unsure and said my case is very ambiguous. He went on to explain the medication can kill me and how bad that would be if I didn't have wegs. I think my eyes shot out of my head! I immediately answered, if that's the case, I'd rather deal with the wegs! I developed a rash yesterday and once again today am told I have pleurisy again! I'm back on prednisone and the vicious cycle continues! (Pred = water weight, and it makes my HF worse.) I'm praying and asking God to give me clarity in all this so a correct decision can be made. And traveling to Cleveland would be another whole can of worms! Somehow in all this, I'm still hanging on and thanking God everyday for my life.

Blessings!

Hope003

[Pete]

Well Hope, if you can see Dr Villa Forte, you'll find a caring and knowledgeable doctor. My first appointment with her lasted about two hours. She reviewed my case history from A to Z, gave me a thorough physical, and sent me downstairs for labs. She explained the changes she made to my meds (off ctx - after 16 months- and onto mtx with explanation of main and likely side effects), talked about how I might feel, gave me her contact info, and had me set up a MyChart account. She works well with my PCP.

Lit would probably help if you could take your case history with you for her to review.

In short, I think she's a great doctor as well as a good person. Hope you can figure a way to see her.

[annekat]

That's strange that those well known docs in NY couldn't help you. If you can't make it to Cleveland, you might consider U. of Penn teaching hospital where Dr. Merkel, another leading expert, takes patients. We have just been discussing that with another new member who is making plans to go there. However, if Dr. Spiera recommended Dr. Villa Forte, and considering Pete's experience with her, that sounds like a very good bet if you can possibly do it. It seems very strange to hear a doc say the treatment could kill you, and that prednisone and other standard meds would not help you. I've only heard that once before on this forum, and that was not from a WG specialist by any means. If you have Wegs, you should not be having to wait all this time for treatment. Best of luck.

[Hope003]

Thank you both very much! : )

I'm going to see Dr. Spiera soon, I'm guessing. They called me and told me he wanted to see me, so I'm going to ask him to help me make the connection with the doctor over at the CC.
The doc told me I would most likely be admitted and they would run more tests and do possible biopsy on my lung or kidney. I'm just concerned with my medical history and complications.
The new docs there don't really know me and it concerns me. I'll keep you updated and let you know what happens. I do have to say, it sure is nice how you all offer your help each and every time!
Thank you Pete and Annekat. You know I thought it was strange when the doc said it could kill me and the Metho and pred would not help. I should have asked why not. I'm going to ask Dr. Spiera that
question when I see him!

Thank you both again!
Blessings!

Hopeful : )

[MaxD]

Hope, I wish you all good luck. You've had a lot of serious complications and I can understand why Dr Spiera wants you admitted in a center where he knows and trusts you will get the best comprehensive care, beyond just rheumatologists. Do express all your concerns to him - I am sure he will consult extensively with the Cleveland Clinic docs beforehand so they will know all about you before you get there - the same goes for your cardiologist who you have faith in. These folks are professionals who don't involve their ego in caring for patients.

[Hope003]

Hi MaxD,

Thank you so very much! Really! All of you!
Your words and thoughts and caring ways are beautiful and I just thank God for each of you and all your help and advice.
It truly does help! A LOT!!!! :biggrin1: :biggrin1:

Blessings!

HOPEFUL! :biggrin1:

[drz]

I would be very comfortable with such a recommendation from a known expert referring you to a another well known expert facility where they hopefully have the necessary skills to help you. All your records and back ground can be sent to them so they won't be starting from scratch. Places like Mayo and Cleveland enjoy the challenge or sorting things out for you since that is how they got their reputation for excellence. Good luck.

[Hope003]

Thank you Drz!

I saw Dr. Spiera on Thursday and he kinda changed his mind. He now wants me to see a lung specialist at The Mayo Clinic in Minnesota! He said this is not acting like Wegeners and he wants this lung doc to be my pilot.
To be completely honest, I'm cooked! LOL I just wonder how can so many things go wrong inside a persons body. Dr. Spiera even shared this is extraordinary and questioned me about the positive ANCA's again.
He said it's really rare for both to come back positive... but I keep saying maybe the lab made a mistake. They must have done 5 or 6 ANCA's now and they are all negative! Maybe the lab made a mistake. It's possible. (I already said that huh.) LOL
Anyway it would be nice to have a team of doctor's take a look at my case and hopefully figure out a way to help me. I'm feeling really weak and now losing my voice. I'm sick with pleurisy again and back on steroids. I mean kinda struggling to just talk sometimes and I never felt like this before. Thank you all for your insight, help and support!

Blessings!

[drz]

I again would also be very comfortable with this recommendations. The experts meet often at conferences and know who is doing what and each others areas of expertise. Do you know who at Mayo? I am going to see my Weg expert at Mayo in July and he is doing a lot research in this area.

[Hope003]

Dr. Ulrich Specks. He's a Pulmonologist. Dr Spiera said he wants him to be the pilot, and lead the team.

[Pete]

From what I've read, you'll be in good hands with Dr Specks. Good luck.

[drz]

From what I've read, you'll be in good hands with Dr Specks. Good luck.

I like him. He is a well respected expert and presents at a lot of the conferences in his field around the world .

When is your appointment set up?

[annekat]

Even I who knows nothing and goes nowhere outside of Washington state, know of the great reputation of Dr. Specks, from reading this forum for the last 5 years. That's great, and I hope he can get to the bottom of what is going on with you.

[Hope003]

Hey, thanks everyone! Dr. Spiera said he was the best but I think my brain has officially checked out! :biggrin1:
Dr. Spiera said he would call me today or so. I'm going to wait until Thursday and hope I hear from him.
I don't have an appointment date yet, he said he would set it up for me. I'll keep in touch and I really
appreciate all the encouragement and support! I hope the docs can figure this out too! My head feels worse
and my eyes are really beginning to bother me everyday now. The Neuo-opthomologist said I have something called
4th cranial nerve palsy. All I know is I never had headaches and pain and double vision and now I do and I want it gone!


God bless all of you!

Hope

[Pete]

Call the office today if you've gotten worse since your last visit. He needs to know your condition is urgent.

[drz]

Hey, thanks everyone! Dr. Spiera said he was the best but I think my brain has officially checked out! :biggrin1:
Dr. Spiera said he would call me today or so. I'm going to wait until Thursday and hope I hear from him.
I don't have an appointment date yet, he said he would set it up for me. I'll keep in touch and I really
appreciate all the encouragement and support! I hope the docs can figure this out too! My head feels worse
and my eyes are really beginning to bother me everyday now. The Neuo-opthomologist said I have something called
4th cranial nerve palsy. All I know is I never had headaches and pain and double vision and now I do and I want it gone!


God bless all of you!

Hope

I would certainly call that doctor and leave a message or tell the nurse about the new symptoms. It might mean you need to do something soon. Specks is in the pulmonary department and these new symptoms suggest a serious vision issue that warrants evaluation quickly.

[Hope003]

I spoke with Dr. Spiera today. He said he ran another set of ANCA's a different way this time. He said if they came back positive he was going to start me on the Rituxan but since it didn't, he will now call Dr. Specks and try to get me in.
He said the test took longer so he didn't speak with Dr. Specks yet. I told him last week I was feeling weaker, the worst I ever felt. He said he's surprised and doesn't think I look that bad. He explained Wegs makes you really sick. I keep telling all my docs I don't feel well and I feel really sick... but I think they see a positive attitude in me and a smile and they just think I'm okay. I went to the endocrine doc because the Neurologist found nodules on my thyroid and found it heterogeneous. That doc asked me what happened. She said my thyroid was fine back in 2013 and now it's a mess. She said it looks like it's being attacked! I told her my blood sugar went from 77 to 180 because of prednisone and she starts writing a script and goes on to tell me i'm diabetic! She said Prednisone can't do that but each time I'm off it my blood sugars are all normal! I was shocked, she didn't even have a blood test and she's telling me I have diabetes! I'm so close to just being done with all these docs. I thank each of you for all your support and encouragement and I pray God's blessings upon each of you!

Hope

[annekat]

I told her my blood sugar went from 77 to 180 because of prednisone and she starts writing a script and goes on to tell me i'm diabetic! She said Prednisone can't do that but each time I'm off it my blood sugars are all normal! I was shocked, she didn't even have a blood test and she's telling me I have diabetes! I'm so close to just being done with all these docs. I thank each of you for all your support and encouragement and I pray God's blessings upon each of you! Hope This nurse sounds a little off-base. I know that when my mother was taking prednisone for awhile after being in the hospital with pneumonia, she became temporarily diabetic and had to inject herself with insulin every day. I'm sure her doc told her that the prednisone was causing the blood sugar problem. When she went off the pred, the blood sugar returned to normal, though I don't know how quickly. I imagine some people become permanently diabetic from pred use, while with others it is just temporary or doesn't happen at all. Everyone is a little different in how we respond to pred or any of the other meds.

[Hope003]

Hi Annekat, that was the doctor who said that to me! LOL I was stunned too but I think I'm getting use to these doctors now just dismissing everything.
They just don't know what to do and I see some don't even want to try and take time to help me. I'm hoping it may be different at the May Clinic.

Hope

[annekat]

Hi Annekat, that was the doctor who said that to me! LOL I was stunned too but I think I'm getting use to these doctors now just dismissing everything.
They just don't know what to do and I see some don't even want to try and take time to help me. I'm hoping it may be different at the May Clinic.

Hope Don't know why I thought 'she' was a nurse. My doc is supposed to be smart but has said some pretty dumb things, too... sometimes I think they will just deny or discount anything we say. Should be better at Mayo.

[vdub]

she became temporarily diabetic
Not really diabetes, per `se, but close to it -- it has the same result, but a different cause. It's called steroid induced hyperglycemia or stress induced hyperglycemia. I suppose most of us have it to some extent or another. I have it.
https://en.wikipedia.org/wiki/Stress_hyperglycemia

[annekat]

Not really diabetes, per `se, but close to it -- it has the same result, but a different cause. It's called steroid induced hyperglycemia or stress induced hyperglycemia. I suppose most of us have it to some extent or another. I have it.
https://en.wikipedia.org/wiki/Stress_hyperglycemia Thanks for explaining the difference, and for the link. My mom had a good attitude and took it in stride. Her dad had diabetes so it must have crossed her mind that she could end up with the permanent version. My blood glucose levels have always been on the high side, even before getting Wegs or using much prednisone, but never to the point where anyone got alarmed. Same now, they are high, but no doc mentions it much. Something to think about, though, eating less carbs and sugar and getting more exercise.

[vdub]

And, to confuse things even more, there is diabetes mellitus and diabetes insipidus. Diabetes mellitus is either juvenile diabetes (type 1) or adult-onset diabetes (type 2). Juvenile diabetes is an autoimmune disease, but I'm not sure if type 2 is -- maybe some else knows.

Diabetes insipidus has nothing to do with diabetes except the misfortune of having diabetes in its name. Diabetes insipidus occurs when your body either isn't producing the hormone vesmopressin or can't process it correctly. Vesmopressin is produced by the pituitary, which is why I happen to know all about it. I have to take the artificial replacement called desmopressin. I suspect diabetes insipidus got its name from the symptoms associated with not having enough of the hormone. The symptoms are drinking and peeing non-stop, pretty much the same a diabetes millitus. Occasionally, I miss taking the pill and I notice right away, since desmopressin has a half-life of just a couple hours.

My son has had diabetes type 1 since he was 8 (he's 33 now). He says if you have to have a bad disease, diabetes isn't a bad one to have. He has an electronic glucose sensor that tells him what his blood sugar is all the time and he has an insulin pump with instant insulin, so management is much easier than it was 20 years ago.

[annekat]

And, to confuse things even more, there is diabetes mellitus and diabetes insipidus. Diabetes mellitus is either juvenile diabetes (type 1) or adult-onset diabetes (type 2). Juvenile diabetes is an autoimmune disease, but I'm not sure if type 2 is -- maybe some else knows. I guess my grandpa had adult onset diabetes (type 2) , because I don't remember hearing he had it when young. There were no insulin injections that I know of but I do remember him having to limit or cut out sugar and using this vile stuff called Sucaryl as a substitute. My grandmother would bake pies with that in them, as well as the sugared ones for the rest of us.

[drz]

I was diagnosed years ago with diabetes. It was called insulin resistant diabetes and lumped under type two. When my pancreas wore out and stopped producing insulin my diagnosis was changed to type 1 by my endocrinologist. Like in vasculitis there are many doctors who prefer a better more descriptive form of diagnosis like insulin dependent diabetes instead of type 1. Many other doctors still don't understand that you can change from one to the other.
Most type 1 starts in childhood as this quote from American Diabetes Association indicates:

Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease.


In type 1 diabetes, the body does not produce insulin. The body breaks down the sugars and starches you eat into a simple sugar called glucose, which it uses for energy. Insulin is a hormone that the body needs to get glucose from the bloodstream into the cells of the body. With the help of insulin therapy and other treatments, even young children can learn to manage their condition and live long, healthy lives.
- See more at: Type 1 Diabetes: American Diabetes Association® (http://www.diabetes.org/diabetes-basics/type-1/?loc=util-header_type1#sthash.HlQS2603.dpuf)

[Hope003]

Hi everybody!

So I'm going to the Mayo Clinic in July. Anyone know of a good hotel in the area. I have been searching the last 2 days and the prices are so high!
Any info on Hotels and travel would be greatly appreciated! Thank you!

Hope! :biggrin1:

[Pete]

Great news, Hope!! Who are you seeing there?

[drz]

Hi everybody!

So I'm going to the Mayo Clinic in July. Anyone know of a good hotel in the area. I have been searching the last 2 days and the prices are so high!
Any info on Hotels and travel would be greatly appreciated! Thank you!

Hope! :biggrin1:

sent you a PM with info on hotels. I am scheduled to go see Specks in July. Mayo use to have a service to help with travel and lodging info if you call their help line for that. They get millions of visitors every year so they should be very good at helping in this area. Be sure to set up an on line account so you can read your info and see your lab results.

[Hope003]

I'm seeing Dr. Specks. :thumbsup:
Also in July!

I asked for help today. It's overwhelming! LOL Travel and hotel and all. I may just pay them and let them set it all up for me.
I'm going to check the PM now. Thank you Drz.

Hope

[Gab122]

HI Hope,
I just read your whole journey on this thread. I'm new here. How did your July appt go? I'm hoping you are feeling better!
Gabrielle

[Hope003]

Hiya Gabrielle,

The appointment didn't go well. I ended up in the hospital from exhaustion, we think. Dr. Specks is very nice but he did say we did not have any unifying answers because all my blood work came back normal. The same thing happened here in New York. The lung doc said it was my heart, and the heart doc said it was my lungs. Then a Rheumy was involved because I had a positive ANCA and sed rate and all the other tests were elevated.

The doctors at the Mayo Clinic said my case is very complex and unclear. I was there a little over two weeks and they took blood that first Monday. All the test for vasculitis and Lupus and I honestly don't know what else they tested me for but Dr. Specks told me I should be reassured because none of the tests were positive.
He sent me to the EP - heart doc, who told me my heart is weakening but he admitted it has nothing to do with why I keep getting pleurisy and coughing up blood, beside all the other symptoms. I was really frustrated but Dr. Specks told me to be reassured I was fine. I was feeling horrible and so discouraged but I did listen to him. I thought, maybe the tests in NY were wrong and this is the Mayo Clinic! Turns out the EP doc sent me to a Rhemy, who decided to do more blood and then they sent me home. I wake up Monday, at home in New York to find out my blood work is now abnormal again! And they never even called to let me know. That really annoyed me. I know I'm a difficult case but at least call the patient and let them know what's going on.

I didn't bother calling them because I was told again and again, how complex my case is. Then I even asked if the blood work could fluctuate and Dr. Specks said no.
Several docs did not give me correct information and their consults notes on me are wrong as well. I sat here wondering, how in the world they're considered the best. They put things in the consult I never even said! And all my records I sent and brought, well they didn't look those over either. The only reason I know this is because the doctor order a sleep test for me and after I had it, he told me it was abnormal. I explained I already had two sleep test that are abnormal and I had told him that already! I personally handed it to Dr. Specks on my first day there! He asked me if I was sure I gave it to him and just went on to something else. I made the mistake of expecting an answer, treatment, or just some help. The lung doc blamed my heart. The heart doc said autoimmune. The Rhemy tried to tell me I had fibromyalgia and by this time... I was cooked! Ohh, and the neuro-Optho said I was fine! LOL And I'm still seeing double and my eye is still hurting and Jerking uncontrollably... and they call this normal! I'm editing this just in case anyone may have some helpful info. So my ANA came back high, Hep 2, came back high. My iron, ferritin and Vit D is low and I'm anemic. The results for the ANA read: cells look heterogenous, consistent with lupus and the second read few dots... cells look PBS - Primary bilary cirrhosis. I have been complaining of liver pain and back pain for a year now. A sono showed my bile duct was enlarged but I was told it's nothing to worry about, my liver enzymes are fine. I went back to my Rhemy here in NY and he read all the reports and said we are no further along. I asked what I could do to help myself and he said to stay out of the sun. I was stunned, and thought the sun was good because my Vit D is low. He asked if I feel tired when I'm in the sun or after a hot shower. Yes! He mentioned lupus but said it's just not clear yet. No diagnosis but will continue to treat me with steroids as needed.

Gabrielle, truly, thank you for asking and sorry for the rant! It's been a tough few months. So... How are you doing? :)

Hope

[Gab122]

Hi Hope,

I'm soo soo sorry you aren't getting any answers and yet having so many symptoms!!! That's truly frustrating and discouraging!

I wish I had some answer to give you medically. Some clue... some rock to look under.

All I can say, all I have to give you, is what is so helpful to me personally. That is: I'm certain that in the midst of all of this, God is with you and completely loving you. That may sound crazy to most. Maybe it's too religious to post? I don't mean to belittle what you are going through. It sounds incredibly difficult. For me the deepest reality, (deeper than my GPA or its treatments or my future, or the impact on my child ... ) is that God is Love. When I hold onto that, it helps me. It brings me peace. I entrust myself to God. I don't mean that you need to be brave and strong. I'm just sharing that bringing my doubts and suffering before God, and putting my trust in Him helps me.

I will be praying for you that your NY Rheumy doc be inspired and enlightened as to how best to help you in a way that leads to a confirmed diagnosis and helpful treatment for ALL of your symptoms.

As for me: my journey is posted in this link below. Symptomatically I'm improving on the meds and ritux. I still have some breathing, sinus and ear issues but they are all slowly improving. I have med side-effects but I know it's part of the treatment.

https://r.tapatalk.com/shareLink?url=http%3A%2F%2Fwww%2Ewegeners-granulomatosis%2Ecom%2Fforum%2Fshowthread%2Ephp%3F t%3D5370&share_tid=5370&share_fid=91944&share_type=t

Praying for you for answers and helpful treatments and sending (((hugs)))

Gabrielle

[Hope003]

Hey Gab!

I feel like we've been friends for a long time! How funny is that but when I read your post my smile went ear to ear! Possibly wider!!!
Your words were truly encouraging! Hey Gab, Jesus is the only reason I'm still walking around! Each time the doctors tell me I shouldn't be here I chuckle and point upward. "Well... I think HE has something to do with my still being here!" :) God is Good!

I'm on disability due to my heart condition and couldn't afford the trip. My church family came around me and then my sister with a go fund me page! God made that all possible! He laid the groundwork for me and I'm still amazed and in awe! He is Amazing! I don't want to come off like the Mayo Clinic didn't help me, they certainly did. And there was a reason God made this trip possible for me too. The doctors here in NY wanted to give me Rituxan. Dr. Specks said it may have killed me. He said it is contraindicated in people with arrhythmias and HF and disease like I have. But... I was too busy wanting help. An answer. Something. And I lost my focus and became discouraged. I just couldn't see how God just saved my life! I was too busy looking for my cure, my answer! And there's so much more! All good that the Mayo Clinic helped me to understand. Dr. Specks said from day one, "We may not be able to diagnose you." So he did warn me and so did Dr. Spiera and so did my Cardiologist. Hey, I'm God's mystery! :)

And while I was there, I did get to tell all the doctors and nurses and techs, the ambulance driver, the people at the hotel, some other patients I met and the maid who took care of our room... I got to share how God used my church family and my sister and some people on facebook, who I didn't even know! How God made it all possible... because the love coming at me was extraordinary! It was like nothing I have ever experience in my entire life! I was so overwhelmed and so humbled by the love of strangers! I knew it was God at work! It was His agape love that just surrounded me and covered me and kept me standing at every turn! I'm so blessed and I'm so thankful to God! It was a beautiful testimony God gave me to share with so many, of His amazing love!

So thank you Gab, fo being Jesus' hands and feet to me! I'm still smiling and I may not know what tomorrow holds but... I know who holds tomorrow. :)

I thank everyone here for all their love, prayers and support! I thank God for each and every one of you and I pray, He gives you comfort and His peace that surpasses all our understanding. I pray He gives each of you a double blessing, for the beautiful blessing you have all been to me! Amen!

Thank you for loving me!

Forever Hopeful!

PS. Gab I borrowed your huggies! Hehehe!

[Gab122]

Huggies for everyone! :hug1:

[drz]

I felt bad reading your post in that you did not get the answers you wished for. I understand your frustration about the doctors not agreeing about things as I experienced that in my treatment and it was a full time job for my daughter to help the doctors sort out their conflicting recommendations during my intense treatment as it was often difficult to get any consensus. The interesting thing to me was the final say on conflicting recommendations was a third year resident who ran the ward i was on and not any of the recognized specialists. The resident did listen to my daughter's recommendations since she was my health care director but the resident and only him or her wrote all the orders for my treatment.

Your case is the kind Mayo often gets and they generally enjoy the challenge. I do know that some times doctors don't get all the info down correctly. Often they don't dictate their notes right away and some times they don't hear what we said or some times what we meant to say.

I wish you had a clearer path to better health and wonder where this long consultation leaves you now. What does the doctor think now who recommended Mayo? Is there another expert he suggests you see or other tests and monitoring they can do now that some things have been been ruled out or clarified. John Hopkins, Cleveland or some big university clinic looking for a challenging teaching case?

I wonder if Specks was aware of your last test results. maybe those abnormal test results might change their analysis about what is wrong with you? Could your referring doctor cal him and discuss your case and ask for his recommendations now for further care and monitoring?