wegner's with fibromyalgia?

[jeff rizz]

I am in contact with JHU. Has anyone here been there? if you do how do you like going there? Did anyone have a tough time getting all their medical info? It seems that any time I try to get this info it is nothing but a hassle and a run around. Any information that anyone could provide would be greatly appreciated. Thanks for all the responses so far!

[elephant]

When I went to Cleveland Clinic to see Dr Langford, my local Rhuemy said she would fax stuff to her, but they didn't ( probably forgot or got lost)....but I still go in to see Her ( the Wegeners specialist). I would try to gather what you can, and go directly to the doctors office or medical records and bring it with you or fax it yourself. Sometimes I had to do that to get things done....I know it is annoying but I wanted the specialist to see everything that she needed. So after the appointment I got what she needed by doing it myself.

[Sangye]

Jeff, you have to be persistent with the Medical Records departments of each facility. Call first and ask what needs to be done. Often they'll fax you a form and ask for a photocopy of your driver's license as id. I usually attach a letter to the form explaining what I need and where to send it (JHU address). Some places charge so make sure you ask when you call. Indicate that you need all your records-- office visits, ER visits, lab work, diagnostic tests, etc.... If you've had MRIs, CT scans or x-rays, you'll need to have them send a CD of the films along with the radiologist's report.

JHU will not review your case until they receive everything. You also should not expect to bring records at your first appointment. They need time to review them so that when you come they can spend their time better.

I see Philip Seo and just love him. He's incredibly thorough. At my first appointment, he had my entire history memorized, which is no small thing. I have a very complicated case according to him. He had made notes and highlighted throughout my records, and it was clear he had read every line. Also, they have their radiologists review your films. They found things that Mayo Arizona had missed.

The receptionist for the Vasculitis Center is Kim. She's always in a bad mood and quite testy. Don't take it personally. Just be patient and compliment her a lot and show your appreciation for her difficult job and she'll be fine with you. The other staff are wonderfully kind. You won't regret going to JHU, I know that for sure.

[Rose]

Today I had a consultation with my pulmonologist as I had not had a check up for a while and as I have been feeling a bit short of breath recently I thought now was the time. In her office we discussed my current drugs which have not really changed since drug induced remission. I mentioned that I had a problem getting below 5 mgs of pred and that when i tried had some flare symptoms in the form of joint and muscular, aches and pains. Her response was that that was most likely not a flare from Wegs as I would have symptoms in my lung and kidneys but a flare from FIBROMYALGIA, another autoimmune disease which she told me then that I was suffering from and that many autoimmune diseases overlap. I said I never had fibromyalgia to which she proceeded to look at her notes from when I was first diagnosed and read to me my symptoms which of course included joint and muscular aches and pains, fatigue etc.

I had been suffering from all these symptoms for 6 months pre diagnosis but they disappeared with treatment and since drug induced remission, they are usually the fist sign of a flare. I actually could not believe what was coming out her mouth. How I envy you people with your vasculitis centers and experts

[Sangye]

Rose, contrary to what MDs think, fibromyalgia is not a disease but an imbalance due to diet. I treated many patients with FM. The key is to clean up the diet-- especially refined sugar, white flour, etc... Sugar is the real killer. If you truly have FM it will resolve completely with a change in diet over 6-8 weeks.

There are various points on the body that are tender when you have this imbalance. This is how FM is diagnosed. Google it and you'll find charts to test the points yourself. If several points are tender you really need to clean up the diet.

Having said that, your doctor is just completely uninformed about Wegs. She thinks every flare looks the same and always affects the same organs? Bah-- we know better! I'm sorry you don't have a Wegs specialist. I forget where you live and if it's an option to get a VF consultant involved.

[Rose]

Thanks Sange. I had a look ..... I am pretty sure I dont have FM. Those roving muscular aches and joint pains I had are classic symptoms of Wegs and like most wegs sufferers, a resurgence is usually the sign of flaring. I was surprised by what she said as she was the one who diagnosed me though by the time I was admitted to hospital I was pretty obvious with major lung and kidney involvement. I thought she was very clued up but today she said a few things which proved otherwise. Feeling a bit down about this, actually!

[Sangye]

Aww, I'm so sorry Rose.

[Al]

Thanks Sange. I had a look ..... I am pretty sure I dont have FM. Those roving muscular aches and joint pains I had are classic symptoms of Wegs and like most wegs sufferers, a resurgence is usually the sign of flaring. I was surprised by what she said as she was the one who diagnosed me though by the time I was admitted to hospital I was pretty obvious with major lung and kidney involvement. I thought she was very clued up but today she said a few things which proved otherwise. Feeling a bit down about this, actually!

Hate it when this happens, Rose. Please let us know how this gets settled!

Al

[annekat]

Rose, even with my limited experience with Wegs (dx April 2011), I know about the muscular and joint pains and how they can come back with pred tapering even if nothing else does. I have not yet gotten as low as 5 mg with my pred, but will not be at all surprised if the joint pains resurface between now and then and beyond. Here's another example of a doc who would know more if they read this forum!

Anne