Question:
Vasculitis, neuropathy, diabetes and what else?I have had vasculitis and peripheral neuropathy in my hands and feet for about four years. My last blood test a couple of weeks ago showed I have diabetes, and I suspect I have been diabetic for about a year. My doctor has suggested that the neuropathy can be put down to the diabetes but this just doesn't add up to me. I have been ill for 12 years with what I suspect is a mild form of one of the autoimmune diseases, and CFS is the best diagnosis doctors have been able to come up with. (Very few positive blood tests.) Recent nerve conduction tests ,after a wait of about 2 years believe it or not, showed up the neuropathy. I thought then that a diagnosis must finally be on the horizon, but the diabetes has clouded the issue.

I have also had pain in the muscles and joints, burning chest pains, a facial rash, photosensitivity and chronic cystitis, but nearly all blood test have been normal. I have a brother with dermatomyocitis, another brother and sister with type I diabetes and both my parents are type II diabetic. I am a 40 year old man. The only form of medication I am prescribed are pain-killers. I really need a diagnosis, for practical reasons as well as peace of mind.


Answer:
I must ask why you need a dx for practical reasons. Certainly for peace of mind I understand. Of course, I see that you are in the UK and therefore I don't know how the dx affects the mode of treatment.

Here, I have been told that if I should go as long as I can without a dx (past that which I have) as the SLE label sets one up for later denial of services. I don't know really how true that is but this was advice from a woman that has been working in the medical profession for over 20 yrs and specifically - in matters of insurance benefits.

OTOH... having no dx leaves one feeling as if they are just imagining all this, or just amplifying the symptoms. In talking to my family I have been honest... "Doc says I don't clinically have Lupus but I should get liver/kidney tests 2-3 times per year" (Doc is covering her backside wouldn't you say?)... My family's response is "Oh, than you're okay." They don't understand that not being dx'd and not having the disease are two entirely different things. That's okay - they don't need the extra worry - but it becomes difficult when I am in such extreme pain that I can't help them or be the good daughter/daughter-in-law and they can't understand why I'm in pain or for that matter just too exhausted to function.

I am blessed with a very understanding and supportive husband, a semi-tolerant teenage daughter and a mom that lets me cry on the phone to her just because I have to cry sometimes. I have also found that being a part of a lupus support group (in my case - an online group through Hamline University) gives me support and understanding. It also has helped me to both live with the vague dx that I have and it gives me folks to cry/whine/laugh with that have felt the same feelings of exasperation, pain, exhaustion, anger, etc... in dealing with connective tissue disease. There are several excellent on-line discussion groups. A.S.L is nice but a bit quiet at times though I try to check it out daily. I have heard that the Missouri chapter of the LFA has a good forum. I have read the LFA forum and found that it is very nice too. I personally subscribe to Hamline's Lupus-L which is an emailing list rather than a website. And so on... I'm sure there are more... oh.. a new one that is out is Lupus.onelist.

It is important that you know that all of these groups are open to folks like you and me that have no firm dx. There are several folks (that I know of) on the hamline list that do not have a dx but know that something is wrong and by-golly it sure *looks* like connective tissue disease! And like you, most of us have been in pain for years and are just now starting to understand that something autoimmune might be going on. I've personally fought this one for four years. My sister was dx'd about 10 years ago but then had wavering opinions from docs over the years. It seems to go with the territory right now.

Well... this has been incredibly long. I am posting it and emailing it to you. I hope it was of some help to you and to others. I know it helped me. :) However, I have typed too long and am starting to feel my hands complain.

and here are some links that might be of interest to you.... http://www.hamline.edu/lupus/

http://www.mtio.com/mclfa/fast.htm

http://internet-plaza.net/lupus/

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