Had my appt. at Cleveland Clinic Yesterday. They were very thorough and spent 4 hours taking my history and doing an exam. A vasculitis specialist said she thinks it was not right to dx vasculitis as the symptoms are not definitive enough. She thought it could be vasculitis or a form of arthritis but could not see enough of the symptoms to dx. She recommended taking me off immunosuppressants to let the disease progress and manifest itself so it can be dx'd. I have been wondering if my RD jumped the gun on the dx from the beginning.
Had lots of xrays and bloodwork which no doubt will be normal although they said they were doing some labs I have not had before. I go to my RD and neurologist in 2 weeks to decide what to do. I am so used to this and so tired that I am not even upset. She did talk about putting me on a med to block the pain signals to the brain as I have so much pain. She did not seem to think it likely that I will ever get better, just worse.
I feel like I need to reevaluate my whole life. I can't keep up this lifestyle if it's going to be like this or worse all the time. Hubby wants me to cut work to 4 days a week if I can to start.
Laker
Wow, Laker. I'm really sorry to hear this. I sort of know how you feel. While my whole self was a swollen mess for 4 months, I wondered how could I live like this if no one can fix it. Just hang in there and give it some more time. They'll figure something out. Are you taking the pain blocker and if yes, is it working?Hi Laker,
I am a little confused about the "taking me off immunosuppressants to let the disease progress" part. If they dx you differently than now would the meds change that much? Good luck with your next appt.
I hope things turn around for you soon.
I know this sounds weird, but I hope that your blood work is not normal. Maybe some of these new test will shed light on the situation. I am so sorry for you. Stay strong, their is always a light at the end of the tunnel.Hi Laker, I was in the same position. I had to make some hard, tough decisions about my career and community involvement. The toughest part of the process is sorting through all of it and making the decisions. Once that's done, then you get on with your new, modified, and hopefuly less stressful life. Sometimes we think that there's no way we can modify our job or our homelife but you know there are ways. You'll be surprised at the assistance that you'll get along the way.
I'm hoping that all those brilliant minds can decide on a diagnosis. I'm not sure that I'd want to put myself in the position of having all the symptoms manifest themselves, but then I guess it's also important to know exactly what to treat and how to treat it. Keep us posted on how you're doing. Lindy.
RAJay,
The dr. said imuran has bad side effects and I should not be on it without a specific dx, plus it is reducing the symptoms so it is hard to dx the disease while I'm on it. Sort of a no-win situation.
Laker
I am sorry, Laker.
Huggs
So sorry to hear this Laker. LinB gave some good advice (as always) about decision making. Just try and hang in there until you get a definitive diagnosis, then hopefully you'll be better able to make any necessary lifestyle changes.sorry to hear that you have to stop the meds to refine the diagnosis. I had a previous rheumatologist do that...but not to refine the dx. He thought my seronegative RA didn't warrant those "big guns." But without them, I flared big-time!
Laker, can you tell me what led your RD to dx vasculitis? I understand it's tough to diagnose. Did you have a high ANCA? What other symptoms are you having that made the RD think of vasculitis? Is there any involvment with any organs, or is it muscle weakness, etc? I'm new to this board so I don't know your history.
Hi Jesse,
I had a positive P-ANCA and ESR of 80, progressive parathesia and sensory neuropathy, and vasculitic rashes, fatigue, twitching, joint pain but not swelling, chest pain, ftigue. But my ANCA has been negative in all other tests and all bloodwork and tests normal except for emg/NCV. I respond great to steroids.
I have been reading up on lupus and it seems my symptoms fit that, esp. since I now have low-grade fevers much of the time. But my RD said it's not lupus on my 1st appt. Hmmmm... maybe she is wrong about that too.
Brisen,
I love your little "eye-poking guy"! The dr shoved a scope so far up my nose yesterday I thought it must be going right into my brain! Ow!
Laker
How frustrating Laker (((HUGS))
I hope they find something in the lastest tests so that they can begin to help you. Please keep us posted on how you're doing.
Peace & Love...Neasy
Hi Laker, thanks for your response.
I don't know, it sounds like my RD would also have said you have vasculitis. My ANCA was high but at first he said I don't have vasc. Then at the next visit when I told him about a Johns Hopkins paper I had read with the same symptoms I have of progressive numbness, weakness, joint pain, occasional pain from my face all the way down on my left side (some symptoms which sound similar to yours) he said it's probably vasculitic neuropathy. You seem to have more vasc. symptoms than I do. Not that I want you to have it, but I know how important it is to finally get a handle on what's wrong. I'm still not convinced I'm at that point yet. There don't seem to be many people here dealing with vasculitis so I was especially interested to read your post. Look at it this way, you may feel like you're taking another step back, but since the vasc. expert thinks you don't have it, that's terrific news. Don't be discouraged.
Jesse,
You are right, I was pleased to find I may not have vasculitis. The vasculitis dr. I saw at CC said it may be that I have it but I do not have enough symptoms of it right now to be dxd with it-that it could just as likely be a type of arthritis. I see you have FM. I have a number of very tender spots that the dr found during the exam, but he didn't say anything about. I was surprised at how much they hurt! I think sometimes these autoimmune disease overlap so much that they must be very hard to diagnose. I would be satisfied just to be on some meds that work, regardless of the disease "label".
You did encourage me-thank you. I hope you are doing well.
Laker
Laker, you seem to have a really good handle on this whole thing. Please keep us posted on your progress.Sorry to read of your problems Laker, and hope that things can be quickly resolved for you. Hang in there!