Can anyone relate?

[OJSRLS]

Have an app. Feb 9th with a Vasculitis specialist. The Doctor that did my upper and lower GI saw inflammation although lab said it was suspect for Ulcerative Colitis. The Dr. thinks that I have a systemic inflammation that is the root of my lower back "what I call the creepy crawlies" my Gi issues and the Vertigo that I've had since mid Nov. I have not had a good nights sleep for a long time when I lay down my muscles feel like they are constantly firing to the point it seems like i have to constantly move. Over the counter sleep aids as well as Flexaril don't seem to help. Family Dr. gave me some Ambion to take every other PM and did get about 4hrs solid sleep when use it. Have know started to have tightness in my chest. I have very little energy or ambition. I have taken myself out of service as an EMT and will only serve in a support role as a Firefighter if I'm able. Family Dr. is letting me take 20mg Prednisone every other day, he doesn't want to interfere with any test the specialist might run. Does any of this sound familiar.






























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[renidrag]

OJ, I had none of those symptoms, but did have to have colonoscopy in 2010 and nothing remarkable. I am sure others will be along shortly that may be of more help. I will ask if you have passed any blood? Other than that I am glad you have an appt. for vasculitis.
Dale

[Pete]

How quickly could you get to the vasculitis specialist if there's a cancellation? Try to get in sooner if you can.

[debra]

Hey, Oh, thanks Dale, as a lot of letters there to remember! I can't help, except to tell you, I also have these symptoms, so you're definitely not alone. Sometimes it helps, just knowing that... No sleep for me, gut inflammation check, burning pain through body, especially legs and much worse while lying down. Circulation problems with Wg, is my guess. Vertigo was worse a couple of years ago, so only occasional with that. Chest tightness and discomfort, check. Abnormalties found, heart monitor prescribed for a bit, but no answers Realy. No motivation, and off the wall fatigue that words can't describe, being the worst because its so bad, words can't justify it. Pain, is easy for me to measure, but this fatigue, just can't be . So, know you've got company here. Good luck, with you're appointment! Deb.

[debra]

Oh, is Oj!!!!!!!! Had to program this in as well! Better word, than a couple days ago! Deb.

[Dirty Don]

You seem to be having an AI attack, duh. I had bits and pieces of what you have...leg movement, sore lower back, etc. Sleep aids aren't going to do much unless they're prescribed...doc has had me on Seroquel off & on & it works very well. If this is an attack, 20mg of pred probably isn't enough for you at this point. As Pete warned, you need to get in to vasculitis expert quickly. I put mine off & off, ended up in ICU having no idea of what just had happened...get it addressed now. Best to you.

[Birdie]

suspect for Ulcerative Colitis

My Wegener's tissue biopsy claims only two possibilities for the specific type of granuloma which was found. First is Wegener's and the second possibility is "pyostomatitis vegetans", which is "associated with" ulcerative colitis.

Only mentioning it due to your colitis comment. I'm thinking it's good to know in case you get a biopsy showing Wegener's specific granuloma. The doctors could interpret it incorrectly either way once you're suspected of the colitis issue.

Keep asking questions, looking for answers... and remember that Wegs can cause just about any combination of symptoms.

[debra]

Dirty don, hello. Just wanted to be on the same thread as you, as I don't see you as often... That's it! Hope you're doing well.... Deb.

[debra]

Birdie, hi. Is this information from today's appointment? Or old news? How did things go? Me...

[OJSRLS]

I'm 100 miles from KU Medical Center so I told them at least a 4 hour notice would be nice, 3 would probably be minimum.

[OJSRLS]

I told them to call earlier if there's a cancellation. Surg. feels it is a systemic inflammation due to Autoimmune but also suggested a Genetic work up.

[Birdie]

I told them to call earlier if there's a cancellation. Surg. feels it is a systemic inflammation due to Autoimmune but also suggested a Genetic work up.

Lucky you, sounds like someone knowledgeable and dedicated in your corner.