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JPAZ
02-23-2009, 03:12 AM
I'm a 33yr old male who a few months ago started to have unexplained chest pain, swollen ankle, facial pain, ear aches, numb fingers, and headaches. Since the initial chest pain I lost my appetite and lost 40 pounds of weight. After many doctor visits and a cardiac cath that came back clean I still had no answers. Since my cardiac cath in December my pain and weakness has become more extreme. I had a 5 day stay in the hospital with no answers. Then a few weeks later I was admitted for dehydration for 8 days and had a upper GI and cardiac workup done again during the stay. I was told I have anxiety, and in a round about way told to relax then sent home. My main complaints at the time was severe chest pain, hard to swallow food, and at times short of breath. I also developed bradycardia during this stay. After seeing a rheumatologist at the Mayo clinic (Scottsdale) I was told I tested positive for WG. My cANCA test was positive with a titer of 1:4 and a positive PR3 of 4.8. My sed rate was 26. My urinalysis was normal. On CT and MRI of my sinuses showed mild linear fibrosis in both lower lobes. Also mucosal thickening of left maxillary sinus.
After complaints of shortness of breath I was admitted into the Mayo Hospital. I was there for 5 days and had the so called "Mayo Work up", though I feel my lungs were not looked into fully. Being that by profession, I'm a Respiratory Therapist, I feel A MRI versus a CT of my lungs would have been better. I also feel my trachea and the sensation of it being swollen to me was ignored, also my low oxygen saturation was ignored.
After the 5 day stay I was told the tissue biopsy of my sinus was clear and had no WG present in my sinus. The MRI report on my ankle sugested that it was swollen and damaged from Vasculitis. I also was seen by a Optomologist while there who suggested that my pre-existing Glaucoma and Uveitis of 1 year is the results of vasculitis. I have a shunt in my right eye to relieve my ocular pressure. Not to get side tracked but I developed this glaucoma out of no where and it came on fast.
After my 5 day stay I was told by the attending that since my tissue biopsy of my sinus is negetive for WG and that my c-ANCA blood work is lower now that I was being discharged. I had a spinal tap and many MRIs of my head ordered by the Neurologist to figure out why I have headaches. All of them came back ok. I was not told how much lower nor have a seen the lab results for myself yet of the "lower" c-ANCA test. She agreed that my symptoms were real but could not give anymore explanation of why I was not going to have other biopsies done, such as my lungs, nor anymore blood work to see if the cANCA was re-elavated. They discharged me on with prescriptions for Celexa, Ativan, Roxicodone, and Augmentine. So here I sit back to square one. I have severe chest pain, shortness of breath, pounding head, facial pain, ear aches, hard to swallow, hands are numb ect.
This has taken it's toll on me and my family physically , emotionaly and finacially. Please help me! I have a Wife and a 8 yr old boy whom I'm not ready to leave yet. If you know of any good docs please help me out. Im from the Pheonix AZ area but now staying up north in the Kingman area. Any in AZ, NV, southern Utah, CA, ect any and all info will be a great help to me.
Thank you

Joshua

crackers
02-23-2009, 05:46 AM
hi jpaz and welcome.this can be a truly devastating disease and it sounds like you have had a particularly bad time.it's so important to get treatment and the right treatment as quickly as possible.can't help you as far as who to see but sangye is your best bet to point in the right direction.there is help out there for you it's just finding it.i know how frustrating it can be when you feel like no-one is listening to you but try not to get too stressed out as,in my case,it can cause flare ups.please use this forum to rant and rage or whatever you want to do.there are a lot of good and knowledgable on here so keep in touch.good luck.
john

Sangye
02-23-2009, 08:07 AM
Hi Joshua,
I'm glad you found this forum. You'll get great support here!

You probably already know this, but to make a definitive diagnosis of Wegs requires supporting symptoms/history, positive ANCA and positive biopsy. So it looks like even though you have terrible symptoms, you have no definitive diagnosis. I'm surprised they haven't put you on prednisone, though, just to see if it brings you any relief.

I just moved to Maryland from northern Arizona a few months ago. A Flagstaff pulmonologist diagnosed my Wegs in 2006, but closed his practice soon after. He wouldn't have been able to treat it properly, though. The only rheumy in town nearly killed me a few times. I finally got myself to Mayo in Scottsdale and saw Dr Mazlumzadeh. Who did you see there? How did they explain the bradycardia if you "only" have anxiety (which causes tachycardia, as you know)? Did you see an ENT at Mayo? Did your attending communicate with your rheumy there? Have you seen the rheumy since?

I'm wondering if they did :
1) a nasal scope to see your trachea well
2) a neck CT to look for tracheal stenosis
3) Pulmonary function tests
4) Echocardiogram
5) a repeat sinus biopsy--it often takes several to show Wegs.

These are all pretty standard tests for Weggies and you have a right to request them.

(On a side note : Chest CT is the imaging technique of choice for Wegs. I'm sorry, I don't remember why.)

Other than Mayo, there are no Wegs-competent docs in Arizona. Have you contacted the Vasculitis Foundation? They can give you a list and help you. You really need experts for this disease.

(I also have had/still have ankle swelling. For me it can usually be corrected with acupuncture, once the Wegs is more stable. The medical doctors don't get that, though and usually just ignore the swelling.)

JPAZ
02-23-2009, 09:57 AM
Thank you for your response, Sangye.

It was Dr. Griffing with the Mayo Clinic that diagnosed me with the Wegner's, but while I was at Mayo Hospital I was seen by Dr. Mazlumzadeh also. He was very influenced by the attending for internal medicine, Dr. Miller. He said that the c-ANCA level was decreased and no other rheumatory labs came back positive, but I'm not sure what labs he was talking about.

I did see an ENT there who did a nasal scope, but they only looked above the vocal chords. He said that he did see some irritation, but that it looked like splash over from years of reflux. I did not have a neck CT, but they did do pulmonary function tests and an echocardiogram. They told me everything was fine, but the reports are still not available to me. Being a respiratory therapist, I know that my pulmonary function test was not normal. They only did the sinus biopsy one time. I didn't know it took more than one to show Weg's, so now I know to request another. Thank you!

I've never experienced bradycardia before all this, but all they tell me it's just normal for me. I know it is not normal for me. None of this is normal for me. I know my body and how I feel, and every doctor I have been to looks at me like I'm crazy. This has been a very frustrating experience.

When I asked Dr. Miller at Mayo to try the prednisone to see if it would help, she told me to contact my primary care physician, but that holistic remedies might be the best way to go. what???

At this point I feel like my world is out of control and I can't find anyone to listen to me or help me. I have family on the east coast that are willing to help me if I need it. Any suggestions such as your doctor or any experts out your way that might be willing to help? I'm willing to go anywhere or do anything at this point. I can feel myself getting worse and no one is going to help me until I am on death's door.

I have contacted the Vasculitis Foundation and have sent out many emails, but no response yet. I appreciate all your help and suggestions. This looks like a friendly and helpful website and I am glad to have found you all!

Joshua

Sangye
02-23-2009, 10:35 AM
I can feel your terror and totally understand. I didn't find this forum until November, so for 2.5 years I was totally on my own with this insanity.

Hard to say if Mayo is not taking you/it seriously. Maybe their reasoning is that since your ANCA is not thru the roof and your sed rate is only mildly increased, things are fine. (The ANCA is not a reliable indicator of Wegs activity, however.) Since pred can cause or worsen glaucoma, maybe that's their thinking with that? Whatever the explanation, they're not making themselves clear to you, they're not continuing to treat or evaluate you, and you don't feel confident in their care. Reason enough to look elsewhere.

I started at Johns Hopkins Vasculitis Center (http://vasculitis.med.jhu.edu/aboutus/appointments.html) in Baltimore. I see Dr Philip Seo, but I hear they're all great. I suggest you contact them ASAP. It can take several weeks-- they want all your records and take a week to review them before allowing you to make an appt. Call 410-550-6825 and leave a message with Kim, the patient coordinator. Meanwhile, maybe you can get a second sinus biopsy.

I noticed the meds they prescribed at Mayo Hospital. Are you taking them? Unless a psychiatrist does a thorough workup and you have ongoing care, I'm always concerned with internists prescribing psych meds and sending you home. Oxycodone-- careful, very addicting, as I'm sure you know.

I'm a chiropractor who, due to an unbelievable level of denial and stubbornness, nearly killed herself from trying to treat my symptoms holistically. I didn't know I had Wegs, but still. I can't believe I'm going to say this--and it's the first time I've ever had to-- but I'm really upset at that MD for recommending wholistic medicine. :mad:

I hope this helps!

andrew
02-27-2009, 07:52 PM
Hey Joshua, how are things going for you now?

coffeelover
02-28-2009, 07:41 AM
Hello Joshua,
I cannot believe the mayo is not doing more for you!
If your pulmonary function test came back abnormal then I would surely check out the stenosis. I think you need to keep demanding answers and I do not believe the holistic approach is what you need to start out with.
Please feel free to get pushy with diagnosis, after all YOU are the most important.
LIsa coffeelover ( I have tracheal stenosis dug to WG....a long time diagnosis, but now improving!)

Sangye
03-03-2009, 03:36 PM
Joshua, any news? I hope you're okay and getting in to JHU soon.

JPAZ
03-08-2009, 02:17 PM
Hello everyone!

I wanted to thank you all for your advice and support. I just returned home a few days ago from being in the hospital for a week where they performed an open lung biopsy. It came back negative for WG, which is great news!!! It's disappointing, though, to still be left with no answers, as I'm sure you all know too well.

I was basically told to go home and live my life. Wow! If they only knew that's exactly what I'm trying to do! They sent me home with a prescription for Prednisone starting at 80 mg for one day, then tapering to 40 mg, then 10 mg over a two week period. The first day was great, but I'm not feeling the effects anymore.

However, I was able to get a rheumatologist to see me today and he took pity on me. When he saw me barely able to walk in toting my oxygen behind me, he decided to take some action that no other doctor has had the guts to do. He's going to actually treat me! He's starting a higher dose of Pred and got me on Cytoxan. I'm not looking forward to the medication, but I feel a little bit of hope that I might get some relief in the near future, and that is something I haven't had for a long time.

Thank you again for all your support! Now...anyone have any tips or suggestions on coping with the side effects?

Joshua

andrew
03-08-2009, 02:59 PM
The side effects I had with Cytoxan were limited to hair loss. I lost about 50% of the hair on my head but it grew back after I stopped. Make sure you drink LOTS of water when taking cytoxan. This will flush your bladder out and ensure you expel any residue. That residue can cause bladder cancer. Not a problem if you keep up the water intake.

BTW, great that you have a caring Rheumy!!! I hope things improve for you soon!!

Sangye
03-09-2009, 12:17 AM
Johsua, I'm glad you're getting treatment. Check in with some of the folks on this forum about how fast to taper the pred. I've been off it for awhile, so I can't advise you. (I now know my rheumy lowered me too fast, esp at the lowest doses)

In addition to drinking at least 2 liters of water a day, my rheumy told me to pee every time I had the slightest urge--keeps the cytoxan from sitting in the bladder. It's a lot of peein' and drinkin'.

As much as I don't want you to have Wegs, I believe a false negative biopsy of any tissue is not uncommon. I still think you need this thing diagnosed, not just treated.

I have a gut feeling that you still need to get to JHU or at least see if a VF doc will discuss things with you or your rheumy. My JHU rheumy says he would have done a completely different (ie, much less toxic) treatment than the cytoxan had I started with him. So there's a lot to be gained from such a consultation. Just my three cents.

Ivelisse
05-07-2009, 01:04 AM
Hi my name is Ivelisse.Im 16 years old.I was diagnosed with Wegners at age 15.I'm not sure if this is where you post stories.But if you would like to know more about my story feel free to send me a message.Thanks

Jack
05-07-2009, 01:18 AM
Hi Ivelisse,
Sorry to hear that you have managed to get this disease at such a young age. You will find that there is a lot of useful information on this site, mostly contained within people's stories. We would love to hear your's! Feel free to post it as a new thread in the New Member Introductions or Weggie's Stories section.

crackers
05-07-2009, 03:21 AM
hi ivelisse it's a shame that you've joined us here but welcome anyway.please browse through other posts and peoples stories.i'm sure you'll find it interesting and you may find some posts that you can relate to from personal experience.come back soon and tell us your story.
john.

Sangye
05-07-2009, 03:30 AM
Hi Ivelesse,
Wow--15 yrs old at diagnosis? Well, at least you're getting Wegs at a time when there are many different treatments available. And I'm sure glad you found our group. Please post your story-- I look forward to reading it.

coffeelover
05-07-2009, 10:53 AM
We are looking forward to hearing your story. Also, so sorry that you have this disease at such a young age. I was not diagnosed until age 50, but starting having symptoms in my 30's.
Lisa Coffeelover

RCOSSIO
05-07-2009, 01:37 PM
Andrew's has not come to grip that his hair loss is due to his age....

All kidding aside...Cytoxan..get your life back...and so you lose some hair..heck bald is beautiful.

I did not experience any hair loss but do agree with Andrew that I drink PLENTY OF WATER...actually 150 ounces a day. Downside...i am constantly feeding the fish...in fact so much that if there are fish out their with WG..i think I am able to treat them as well...

andrew
05-11-2009, 06:59 AM
Andrew's has not come to grip that his hair loss is due to his age....


LOL! It's the only excuse I have. I'm really only 21...really...:D:D:eek: