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Lady Bug
01-14-2009, 04:17 PM
Hi, my name is Brande and I am 28 years old. I guess my journey began when I was about 12. I lived with my Greatgrandmother most of my life. I was severely anemic and at 13 and I was diagnosed as being neutropenic. I began experiencing chronic pain....almost everywhere. I remember that the only way I could describe it was as a "sharp pain not in my skin, but deeper". It seemed like non of the docotors could understand. I was getting my blood checked twice a month until I moved in with my oldest sister becuase my Greatgrandmother couldn't take care of me any more.

I had a bone marrow biopsy at 16, but they found nothing. A few years went by and the pains came back, but even stronger....I could barley move. I started going to a doctor that did a series of blood tests. They MAILED the results to me and Wegeners was on it. I had no idea what it was so I scheduled an appointment and my doctor told me not to be alarmed because I am African American and that it couldn't be that. I didn't think anything of it, but shortly after I lost some of my hearing.....that scared me. I had a hearing test and it confirmed that there was a loss. I moved home and returned to the doctor my Greatgranmother took me to.

I had every blood test imaginable and he told me that the only other explanation would be Wegeners. He also told me that I would need a biopsy to confirm that. My mom told me not too, so i didn't. Soon after I had a hard time "catching my breath". I took a test and they told me that my lungs weren't diffusing oxygen they way they should. After that, I stopped going to the doctor. I continued having the pains, but I don't discuss it with family or my husband (I've had 3 breast tumors removed in the past year and a half) I still have problems with my hearing, It's hard to breathe again, and these pains hurt. They're so hard to describe other than sharp...like some one is pinching me from the inside out. I thought I have allergies, but my nose runs so uncontrollably. Am I over reacting? Please give me your advice. I dont want go back to the doctor unless it's really necessary.....thank you

andrew
01-14-2009, 04:58 PM
It's necessary!!!! See a doctor. Yes, it can be daunting but it's far less daunting that not being able to breathe. Please, please go see a doc. It's important that you don't put up with symptoms. You're certainly a rare case being African American and having WG but that doesn't make it impossible. Take all the blood tests you have ever had, especially the one that says Wegeners and get to a doc....now.vIf that doc dismisses, you, see another one. Where are you located? Someone here might be able to recommend a doc in your area.

Edit: I see you're in Phoenix. Not sure if anyone here has a recommendation but hopefully they do.

By the way, welcome to the forum!

Lady Bug
01-14-2009, 05:37 PM
Throughout the the years I've been reading post on forums from people that has had such bad experiences. I kept telling my self that my "symptoms" are separate incidents and that I have no right to say that WG is what I'm experiencing. Sometimes it feels like something is always wrong with me. I've always had "allergies", but allergy medication does not work. I have a sore in my nose that stings. I started having nose bleeds when I was pregnant 5 years ago.

I had the 3rd breast tumor removed right before my husband and I moved to phoenix so that he could go to an audio engineering school. After ariving, I got a bad urinary/bladder infection and they found blood in my urine. Then they found a 4th tumor, but the others were begnign, so I'm not having surgery. My husband is my middle school sweetheart and he remembers me being hospitalized for neutropenia. He's been so wonderful through my surgies as an adult. He just graduated, he enjoys the company he's with, and....he's happy.

I came to this site for advice, understanding and, friendship....Andrew, I will return to the doctor. Which type should I start with? I'm going to see how far I can get before i say anything to my husband, but I will definitely keep posting. I really appreciate your response and and those that may come in the future. Thanks a bunch ! :)

andrew
01-14-2009, 06:30 PM
Yes, the Internet can be a wonderful mine of information. It can also scare the crap outta you! :D

Your husband certainly sounds like a great guy. Far be it for me to give you relationship advice but in my experience, the sooner you tell your loved one the better. They are there to support you. You've obviously had other health issues and he's been there for you. I understand that you don't want to burden him with 'yet another illness' but this guy has a good track record! My advice would be to tell him as soon as you can but it's entirely up to you of course :)

As far as what kind of doctor to start with, I think a good GP would be the first step. He/she can then refer you to a specialist. Also, this page of the Vasculitis Foundation's website will give you contact details of WG docs that your GP can contact: Medical Consultants | Vasculitis Foundation (http://www.vasculitisfoundation.org/node/44)

You might need to ask around to get a good GP but they're out there! The earlier someone takes a look at your symptoms, the quicker you get treatment. The quicker you get treatment, the less you'll be 'down' before you can get up again.

I've also asked about a GP in another forum I'm in so between who we have on here and who's on there we'll hopefully have someone for you.

When you go, don't forget to take all your test results. Don't be surprised if the doc orders another lot of tests (they do that a lot) but at least what you have will give a history.

crackers
01-15-2009, 12:02 AM
hi brande i'm john.welcome,if that's the right word,to the forum.my consultant told me the set of symptoms i was presenting were rare but i still had them,so rare doesn't mean impossible.please get back to your gp i ignored my symptoms for three months thinking they would just go away and ended up seriously ill in hospital.good luck and stay healthy.
john.

Sangye
01-15-2009, 12:32 AM
Hi Brande,
I just moved to Maryland from Arizona (Sedona and Flagstaff) a few months ago. Hello to my favorite state!

Please call the Mayo Clinic in Scottsdale to be assessed. Like Andrew said, it is extremely important that you go now and don't put this off. Many of us almost died because no one would take us seriously, or we didn't pursue getting care ourselves.

My rheumatologist at Mayo was Dr Mehrdad Mazlumzadeh (Dr Maz). Mayo will do a very complete workup and figure it out. They will not ignore you. When you schedule an appointment, tell them it's urgent that you see a rheumatologist who knows about Wegs (that's Dr Maz), because you've tested positive for it and have not received treatment. They'll get you in fast.

In case the main scheduling dept doesn't understand, call Dr Maz's office and ask for their help.

Please, just call now.
Main Scheduling 480-301-8000
Rheumatology- Dr Maz' office 480-301-4342

(It's funny, I still have Mayo and Dr Maz's phone numbers on my cell phones as I transition to new docs. Just yesterday I thought "I should delete them." I couldn't make myself do it.)

andrew
01-15-2009, 05:50 AM
Nice one, Sangye. Thanks for the info. You rock, as usual :D

Lady Bug
01-15-2009, 11:36 AM
Thank you, John and Sangye. I'm lovin Arizona!!! It's so beautiful here. I will call to make an appointment. Meanwhile, I'll try to get my hearing, lung, and blood tests. We have health insurance...I'll call to make sure they accept it. It's a start! I apprecitate your guidance so much. I'll let you guys know what happens. Peace and Blessings :)

crackers
01-15-2009, 01:14 PM
good to know your doing something positive.please keep your husband up to date with what's going on.i don't think i would have made it without my wifes support she has been amazing.he loves you and will be there for you no matter what.

Lady Bug
01-17-2009, 03:40 PM
I called the clinic and made an appointment. I go Monday at 8!!!! I asked for Dr. Maz, but he wasn't available, so I'll be seeing another doctor. I discussed it with my husband and he's been working on our insurance numbers....we're enrolled through his employer, but we haven't received the cards yet. I am so glad you didn't delete those numbers, Sangye......

Andrew, thank you for encouraging me to go! Sangye, i wouldn't have known where to have gone without you. Crackers, I did talk to my husband. He's been reading more about WG. We're working on our communication....he feels helpless and doesn't know how to react. I told him that love and support is enough.

The lady was so nice when I made my appointment. She told me about fasting and everything, but could any of you tell me more of what I should expect if they're starting from the beginning? Should I write down what I remember from my history? I didn't think I would be able to go so soon, so I have no medical records.

All of you are my Angels and each of you and your families are in my prayers. Peace and Blessings :D

crackers
01-17-2009, 10:16 PM
hi brande.that's great that you've got things moving.yes you should write everything down even the smallest detail that you might not think relevant,because i can bet you'll come out of there and remember something you should have mentioned.my wife,sue,also feels helpless and frustrated that she can do nothing but you're spot on with the love and support,it can mean so much when you're feeling low.anyway good luck and stay healthy.
john

Sangye
01-18-2009, 01:44 AM
Brande, I am SO relieved to hear this. You've been on my mind a lot. Yes, as John said, write everything down. If you don't remember exact dates, maybe just the season and the year, maybe just the year. If you have any records (blood tests, x-rays) bring them.

If you have a PCP, bring their name/address/phone. Mayo docs will work closely with them and will automatically send them all your records each time you go. They'll also send you copies without asking, which is great. Keep them.

Here are other things they may ask :
1) The environmental/ life circumstances when it began and when it's shown up (eg, Did you have a cold/flu first, were you exposed to toxins or mold, high stress).
2) What made symptoms better or worse?
3) How has your health been in between the times when it's been a problem?
4) Sometimes doctors ask : "What do you think it is?" This might throw you off, like why's the expert asking me? Good doctors know we all have a better sense of our bodies than they do.

Mayo is highly organized. It's very big and you'll go to several floors. If you can't walk far, you can get a free wheelchair at the main entrance. They'll even offer to push you if you're alone. First you go to the check in and they give you an itinerary for the day. Mayo runs right on time, so make sure you get to your appointments a few minutes early. Even the labwork is scheduled! Each time you go to a new appointment, you go to the check in on that floor.

Look at my message "Tips for Dealing with Doctors" for more stuff. Write down questions you have ahead of time and don't be afraid to ask more. Your husband (or anyone else) can go in with you and ask questions, too. They understand that it takes a village. Everyone there is so kind.

Lady Bug
01-18-2009, 04:51 AM
I'll be seeing Mertz, Lester E. M.D. Sangye, were you able to meet him? I think it's nice that they have the pictures of them on the site. I read over their insurance and health plans so I know what to expect with billing. My husband, Ty, got the member numbers for our insurance this morning. (http://www.mayoclinic.org/bio/10315969.html)

I was reading something on the internet that referred to WG as being "active" I'ts been such a long time since I had the blood test that confirmed it. Does the status of your blood change over time or does it stay the same until treatment? :confused: I wish I could take one you with me lol. i didn't realize that so many of you are around the world. Crackers, Sangye, how have you been feeling?

Sangye
01-18-2009, 05:25 AM
I didn't meet Dr Mertz. I like seeing the pics, too.

"Active" disease means the symptoms are flared up. The disease is in it's most dangerous form then. For some people, the difference between active and remission is like night and day. For me so far, I've always been somewhere in between, in a constant state of minor flare. Everyone is very different.

As far as blood tests, some change with active disease and some might or might not. Because Wegener's is an inflammatory disease, 2 indicators of inflammation (ESR and CRP) will go sky high when it's active, and lower as the treatment works. The ANCA is more specific for Wegener's, but is not always a reliable indicator of active disease. Ideally, the ANCA would be high with active disease, decrease as the treatment is working, stay low or even go negative when in remission. My ANCA has never been a good indicator-- stays sky high no matter what we do.

Dr Mertz will explain all this in much better detail.

On your first day, you should expect to do bloodwork, urine and a chest x-ray at a minimum. He'll likely order a chest CT scan. There is a possibility that he'll hospitalize you to begin treatment immediately. I don't want to scare you with that, just to give you a heads up. Please don't hesitate to do it if he feels it's necessary.

Meanwhile this weekend, rest and enjoy yourself a little, 'kay? Monday morning will come soon enough. :)

crackers
01-18-2009, 07:04 AM
good luck on monday brande i hope everything goes well for you.as for myself i've been feeling a little rough lately.just briefly started feeling unwell xmas 06 diagnosed with possible wg in feb 07 had many tests done and in oct 07 while undergoing a colonoscopy they found a tumor.this was removed but the bowel perforated and a stoma was put in place.i spent a week in intensive care and a couple more weeks on a general ward.the stoma was reversed sept 08 but leading up to that i was feeling pretty good with wg.i was able to walk the dog for about a mile before collapsing in a heap but since the reversal it's a struggle to walk 100 yards and the dreaded cough is back with a vengeance.the doc has upped the steroids so i'm feeling a little better. anyway again good luck on monday,let us know how you get on when you can.
john

jola57
01-18-2009, 06:04 PM
Hello Brande, I am glad that you listened and are going to see a specialist. Sangye will know the best docs and routines for Mayo Clinic, I hear its excellent. Now you have to listen to the doctors, especially the rheumatologist, and do what they say. No skipping out on tests or medication that you may be put on. It is very important. This illness of ours can get worse without any warning and it can be dangerous not to take medication. Good luck on monday, hope all goes better than expected

Lady Bug
01-19-2009, 03:43 AM
Hi Jola!

I will definitely listen to him. I don't want to do anything to prolong finding out what's going on. My husband was trying to get our insurance numbers Friday...the cards came in the mail Saturday!! The lady I talked to said that we need a PPO and not an HMO. Ty had no idea what he selected, but we do have the PPO, so I'm all set. Thank you so much for sharing your concern.

John,

I hope you feel better. You and Sue stay strong. Please take care of yourself and keep us updated. I haven't been able to find support groups. I know that all of us aren't married and may not have family. It's hard for people with support. I can't imagine what it's like for someone on their own. I'll do more digging. God Bless. :o

crackers
01-19-2009, 01:30 PM
good luck tomorrow brande.tell ty he is welcome to post on here.you are not alone we are all here for you.
john

Lady Bug
01-19-2009, 11:48 PM
It's so early lol. I usually drink hot tea to get me goin, but I'm fasting. Well, I'm getting the lil one out of bed and we'll be off shortly. I have to take him to school and from there on I'll have the wonderful listening pleasures of Andy McKee and Norah Jones. I was up forever last night watching Hans Christian Anderson.....I love Danyy. I better go my husband is giving me the "look" (I think he's nervous) lol Thank you much to all of you. Have a good one!

Lady Bug
01-20-2009, 12:58 PM
Hi guys. Today was interesting. Mayo is about 40 minutes away from where I live and I didn't realize it was IN the mountains. It's very beautiful out there. They are very organized and polite. I was thinking about all of you the whole time. I wanted to kidnap someones laptop and log on :D.Everybody was warm and welcoming. Dr. Mertz is nice and he still looks like his picture .....with the exception of some graceful grays. ;)

I told him about my medical history and he asked tons of questions. At first he said he didn't think it is WG (but he was still testing for it. My ANCA test a few years ago is what raised the WG questions) , but when we talked about my breathing and constant sinusitus he didn't like that so he's doing the ANCA again. He ordered: chest x-ray, blood and urine labs, hearing test (been having problems), breathing test, skin allergy test, endoscopy, and a physical. I completed 3 today (chest, blood, and urine). They broke it up into 3 different days. I go back the 21st, 29th, and Feb. 11th. They took a lot of blood......I ate like a bear after :D.

Well, we're all home settling in. I can get back to some hot tea :p and regroup for work. I told him how supportive you have been and that you helped me get here. Thank you Angels.....have a great nite.....

Has anyone heard from Andrew? Is he ok?

crackers
01-20-2009, 08:46 PM
hi brande.it must be a relief to finally get the tests underway.i think splitting them up into 3 more sessions is better for you.i spent a month in hospital having tests done nearly everyday and it can get a little overwhelming.will speak to you soon.good luck and stay healthy.

Sangye
01-21-2009, 12:37 AM
That's great, Brande. What a relief to know you're THERE and someone is taking all this seriously.

I'm worried about where Andrew is, too. He's usually on here daily. Andrew! Send up a flare, would ya?

jola57
01-21-2009, 06:09 PM
Ditto for me Brande, I'm glad you have a positive attitude and I hear you about the tea. Can't live without it, nothing better than a hot cup of tea for everything that ails you.
I'm worried too, Andrew are you Ok?

andrew
01-21-2009, 07:22 PM
I are here!!!! :D:D

Very sorry. Work and business have been insane. Kinda calming down now though which is good. Sorry to worry you all, I'll be sure and check regularly next time I'm swept up :)

I just read through this thread to get up to date. Brande, I can't tell you how pleased I am that you got that appointment at such a great clinic and so quickly. It really brought a smile to my face. Great news! Glad you have such a good doc looking after you as well!

Tell your husband he's free to log in here too if he wants a chat. There are also some support groups available for family members of sufferers but blowed if I can find the link :D Anyone?

I'm off to catch up on the threads I missed....

germaine
01-24-2009, 03:47 PM
Hi Ladybug,
It sounds like you have been having a really hard time. I was diagnosed Nov 6,08 with wegener's and got treatment started that night. I went to 2 GP's who missed it, then emergency one evening, then was referred to an Ear, nose and Throat Specialist, who was familiar with the disease and got an ANCA test which showed I was positive. More being checked, getting rapidly sicker, and then the diagnosis. I started with prednosone 60 mg,that night and got immediate relief for much of the congestion and some of the pain. I have had three bouts of cytoxan, one a month, interveniously, and another scheduled for February. I also am on antibiotics and calcium suppliments, and vitamin D to protect my body. Also a few other things. I have a pill box which has four slots a day, for seven days a week. It sure helps keep things straight. Generally I feel pretty good. The prednosone is down to 20 mg. now. The relief of treatment is hard to describe. Wishing you the best. Keep in touch is you have more questions about this phase of your illness. Germaine

Carol
01-25-2009, 05:42 PM
Hello Germaine,
my medication is very similar to yours but why the Vitamin D?? Please email me back and explain it to me. thanks.

Jack
01-26-2009, 07:28 AM
Vit D helps the body to absorb Calcium. If you are taking steroids, you need this to ward off Osteoporosis. After around 25 years, my bone density is down to around 50% and I have to be very careful to avoid breaking bones. :(

andrew
01-26-2009, 08:53 AM
Agreed. I take Calcium with Vitamin D very day due to effects of the Pred. Last bone scan showed a little deterioration, not enough to be in a panic about but it was there.

crackers
01-26-2009, 09:58 AM
i am on calcium tabs everyday but once a week take a tab called alendronic acid which helps the bones absorb the calcium.
john

Luce
01-27-2009, 03:25 AM
I only take alendronic acid once a week - nothing daily and no Vitamin D. It's early days yet so not sure if the pred has done any damage to my bones.

John - isn't alendronic acid a pain in the backside to take? You have to take in the morning with a full glass of water, wait half an hour before eating or drinking anything else and you must remain seated or upright (ie no going back to bed!) until after you have eaten.
Thank goodness it's only once a week - would drive me nuts if I had to do that every day.

crackers
01-27-2009, 04:20 AM
hi luce.yes it's a nightmare.anyone who thinks staying upright for half an hour is no big deal should try it.i made the mistake, when i first started taking it, of bending down to pick up something.the nausea i experienced was awful and lasted most of the day.now before i take it i make sure everything i need is at waist height and the dogs stay in their crates which cracks them up because i feed them when i get up in a morning.i googled AA once it can be scary stuff if your not careful.
john

Luce
01-27-2009, 07:17 AM
John

Yes I've read it can be nasty stuff - I'm always worried it's going to get stuck on its way through my system and cause horrible legions.
I take mine on a Saturday morning and sit up in bed on the laptop ordering our weekly food shopping online. Since coming out of hospital I've not had the energy or patience to walk round the supermarket so have got myself into this little routine.
It's good that we've found a way to minimise the disruption this "silly pill" as I have nicknamed it causes us.

What dogs do you have by the way? It's been said before on this forum that animals are great therapy and I have to agree. Unfortunately our landlady won't allow cats and dogs but we have a rabbit, 2 guinea pigs and 2 rats which are great company and I believe kept me from going insane while I was signed off work..

crackers
01-27-2009, 10:18 AM
luce.
that's so true about animals and therapy,when sue is at work they keep me company and stop me climbing the walls(if i had the energy that is).as i said we have 2 a mini schnauzer who is 2yrs old called holly and a german shepherd who is 8 months old called bailey.thankfully they are best friends and spend all day playing.holly weighs 1 stone and bailey is seven stone and a real beast but he is so gentle with her and is a big softie(with us anyway).a mate of mine has rats they have their own mannerisms and characters.
john

Carol
01-27-2009, 11:41 AM
Yes I also take the alendronate - it's called Fosamax here in Australia. It is a pain and I have to put a sign up the night before so that I don't get up during the night - nearly always am up for an hour about 3pm - and have a cuppa and something to eat with it. Instead I just have a hot cup of water. It's expensive here - about $11 per tablet unless you have had a broken hip etc to prove that you need it. As a preventataive it's not on our Public health system pharmacy program. so I guess that the Clacium and vitamin D are not needed if you are on this drug - is that correct?
regards
Carol

crackers
01-27-2009, 12:40 PM
hi carol.i did ask 2 years ago when i was first prescribed AA what it was for and i was told that as you get older the bones don't absorb calcium as easily as in a younger person.the AA helps in this.i am seeing my gp in the morning so i'll ask him about AA.i will post what he says.
john

Luce
01-28-2009, 02:54 AM
Carol I guess we are lucky here in some ways as our NHS covers this drug - although I have to pay £7.10 for each prescription I have and usually a month's supply at a time. I must have picked up at least 30 prescriptions in the 3 months I have been ill but luckily we have a pre-payment scheme where you can purchase a card which gets you all your prescriptions for 3 months for just £28 (equivalent to just 4 prescriptions!) so I have saved a great deal of money already.

john I loved the story of your dogs, they sound adorable! I'm not sure why I'm taking alendronic acid as I'm only 25 so my bones should be ok at absorbing the calcium. I thought it was more of a supplement due to the prednisolone making me deficient in calcium.

crackers
01-28-2009, 03:48 AM
luce. i saw my gp this morming and asked him about AA.he said it's to counteract the use of steroids which can have a detrimental effect on bone density.i've had a couple of bone density scans in the last two years so now i know why.maybe it's an age thing regarding calcium and AA.i'm 56 so maybe my bones need a little extra help as opposed to someone in their twenties.don't know for sure could be wrong.
john

Luce
01-28-2009, 05:16 AM
John

Just did a bit of googling and I'm taking it to prevent losing any more calcium from my bones, which is the side effect caused by the steroids.
Understand now why I don't need supplements to increase my calcium but do need the alendronic acid to prevent losing the calcium I do have.

Might ask about vitamin D supplements though as we get most of that from exposure to the sun. However I am on azathioprine which tells me I need to avoid the sun and I always wear high sun protection due to the increased risk of skin cancer.

Does anyone living in hot climates taking azathioprine also take this precaution?

Beth
01-28-2009, 02:46 PM
Hi All,
I'm new this forum, and I've learned so much reading through this thread. I was diagnosed 18 months ago with WG. I've actually been on steroids for almost 3 years now, due to other autoimmune diseases in addition to the WG. I take Calcium and Vit D twice a day, plus Fosomax. I agree it's a pain to take, but my bone density tests have been stable, so it's working for me.
Brande, I wish you the best of luck with all your tests. I sometimes think tests and going to the doctor become like a full time job!
Sangye, I also have had a very high ANCA no matter what my symptoms are. Also, I see you live in Maryland. I live in PA, but my Doctor is at Georgetown Medical Center. Where do you go?

Sangye
01-29-2009, 02:05 AM
Hi Beth,
Hello fellow "High-ANCA-no-matter-what-we-do!" I just moved to Maryland in October and started at Johns Hopkins with Dr Philip Seo. They have a whole center just for vasculitis. Dr Seo is the best rheumy I've had. Really understands the emotional components of Wegs also. And, he doesn't order every test in the book just to do it. He's the only rheumy I've seen that doesn't think my weird symptoms mean I'm crazy.

andrew
02-11-2009, 07:10 PM
Hay LadyBug...how are the consultations going? Any news?