Hi, I'm new to this forum. I have been on the PN forum for a while, but since a month and a half ago my Rheumatologist finally decided I had a Auto-Immune Inflammatory disease I thought I would come over here and check it out.

I guess I am wondering if it is unusual for them not to be able to find one specific DX? The Rheum. just said all my symptoms/History point to some kind of Auto Immune and so they started me on Methotrexate and Folic Acid. to see if it would help my PN (which had been foing on for 1.5 years) and my blood tests.

Your rheumy can take a blood test called ANA and find out what you actually have, if it turns up positive, if not you may have to deal with your symptoms until it does show up positive and they know what you have. I've had Sjogren's for some time before my ANA Test came out positive...they thought at first that it was Lupus and I think they still think it will go into it, but it hasn't yet and I'm keep a positive attitude that it won't! Good luck.

Hi Macophile

I believe the answer to your question is yes!

I have been told something similar and have been referred by my neurologist to yet another neurologist who specializes in autoimmune / inflammatory conditions of the CNS. It turns out that he is so active in research that he can only see patients one day a week. The earliest appointment I could get is in mid-December)

All the to-ing and fro-ing has been going on now for some two and half years. I never would have believed that I could get to the point of hoping for a confirmed diagnosis of MS - (I had one about a year ago from another neurologist that became ADEM / possible MS and half a dozen other conditions with the one he referred me to).

The trouble with all this is the feeling of life slipping away without any clarity or focus. It's easy to invest so much anticipation in each visit to a consultant only to come out of the consultation disappointed by the lack of any real information.

I wish you lots of courage and positive distraction from that niggling question of "what in the world is it".

Merle

I don't know if anyone has this... but every so often my feet sweel and the pain gets much worse... even once the swelling goes down the pain stays bad for several days... does anyone else experience something like this?

I mentioned this to the Dr. and she told me it was a flare of the auto-immune problem... well, great, but she had no idea how to prevent it or help it once it starts... does anyone have anything that works for them?

ADD and things of this nature also stress me out. This stress for me turns into something immune. As a nutritionist for 4 plus years, and having a bro-in-law who has a clinic in Texas, I think it's important that you take a multi-vitamin /mineral to see if this helps. For ex. a Magnesium deficiency (e.g. [I]Natural Calm is available at Whole Foods) can correct any Mag. deficiency which controls water balance, and other not so uncommon but critical issues you have.
Melsteam

Well, I take Magnesium (supposed to be good for nerve problems) and Folic Acid (Because I'm on Methotrexate), but as far as I know I have no deficencies.

Could this increase in flares or the foot swelling have anything to do with the Methotrexate I wonder...?

I'll just refer you to my comments in the thread "Sjogren's Disease and much more" that I just posted. Wish you well.

Hi,

They can find a specific one. If you wanted to, you could chase it down. They just don't have the expertise where you are. This is not uncommon. I am in an area that has relatively good medical care. I was diagnosed with amyopathic dermatomyositis via a biopsy and lab work. A specific diagnosis is a mixed blessing if you happen to not fit the profile in the way your disease presents itself.

The amyopathic dermatomyositis diagnosis, though precise, does not completely fit my situation and symptoms. But there is not a durn thing I can do about that unless I want to travel to John Hopkins, etc. And then MAYBE they could help. I am working full time and I can't deal with that mess when it might not even help. Sound a bit cynical? I plead guilty.

I left my rheumatologist who was good enough to recognize and get me diagnosed, because my main symptom, after awhile, was neuropathic and/or muscle pain and fatigue. The fatigue she validated and even offered to write me up for disability. I wasn't ready for that.

But she consistently told me that according to her information pain was not part of my disease. That made me cry every time I left her office, so I had to stop going to her. I now understand that there is very little real agreement on these diseases and very few doctors that have treated many patients.

The big (most respected) neurologist at UNC told me "You have a rare disease and you are in a subset of a subset of people with that rare disease. If you go to John Hopkins, and you find a doctor who has treated more than 5 or 6 people with the strain of the disease that you have, that person will be a true expert."

That really discouraged me from going because I would just rather deal with it myself even though it is very hard.

I gradually tapered myself off the methotrexate and prednisone. I wanted to know what was the disease and what was side effects!!!!!!! I take a ton of supplements and I I just started taking Lyrica to see if it will help. It was prescribed three times already, but I filled it and didn't take it because of fear from the bad experiences with side effects!! Now I am into my second week of the Lyrica. No help yet but no terrible side effects either. Wish me luck. I'm off work so I can deal with pain a bit easier. Before now I have been relying on 800 mg ibuprofen and then 1/2 a vicodin for breakthrough pain. But since I do not want to become dependent or deal with doctors about it anymore the pain remains undercontrolled.

Take care.

Ok, I have been on the methotrexate for a while and the PN has calmed a bit.. I can actually sleep now (YAY!!) and when they retested my blood my CRP level went from 34 to 18.6 and my ESR went from 46 to 34! It must be doing something! I just wish it would do more, faster... I have to go back to school soon, and I don't know who I will be able to deal with all of this.