Dreamer,

Let me back-track to your last reply.

Of course, no one 'wants' to go to doctors, but you have several things going on that NEEDS to be properly evaluated by specialists. Your neuro isn't going to Dx a likely autoimmune disease for you. You have tell-tale signs of one with the joint pain and swelling, then add rapid onset neuropathy and autonomic dysfunction!! You NEED a rheumy to piece together whether an AI disease is responsible...which it sounds like it is. BTW, up to 40% of those with autoimmune disease (myself included) are what they call sero-negative, meaning negative blood tests. They still have the condition, it just has to be proven in different ways (biopsies, US, MRI, etc).

Do you have other symptoms...like fatigue, dry mouth/eyes, rashes (face or anywhere else), low grade fevers, etc? What are your autonomic symptoms and what testing have you had for them?

Your joint swelling/pain can actully help you get a Dx AND appropriate treatment for your neuropathy. They may be able to confirm an inflammatory arthritis by US of the joints looking for fluid and/or joint fluid test. If they can confirm autoimmune process this way, then your neuropathy is likely a result of the AI disease and treatment with IVIG or steroids would be approprate and likely helpful for you.

By all means, you should have the skin biopsy repeated in 6 months for re-evaluation...based upon what Glenn reported and I mentioned earlier. This, with your obvious rheumatological condition, would help determine the exact cause of your neuropathy and what treatment would be best.

Hope this is helpful.

Thank you. No dry eyes or mouth, but for about eight weeks, a few months ago, I had a low-grade fever...well, it would flux from 99-101.3. My doctor ran a bunch of bloods and she couldn't find a reason for it. So she wanted me to see a rheum. but since I knew I'd see this neuro, I wanted to wait to see him first since I had been waiting literally years to see him. After about 8 weeks, my fever was fine! But the past month or so, it's back and I'm again feeling awful all of the time--tired, etc. because it wears me out a bit, esp combined with my back pain/feet pain. I really expected the biopsy to say something because this burning has been going on for years, and I was surprised it was negative, but I'll hopefully talk to the neuro soon. I left another message this morning and the lady said that the doctors sometimes take a long time to do call backs.

Thank you so much

You really need to consider the rheumy...in conjunction with seeing the neuro. They need (and will in most cases) to work together when it is an autoimmune process causing the neuropathy.

Do you know what labs have been done? Have they done CRP and ESR? I ask because both of these are markers for inflammation. It is possible that your axonal swellings could be from inflammation, as well as your joints, and even your low grade fevers. If it is, then a short course of steroids might help with multiple things...including the burning.

When you talk to the neuro, ask him/her for suggestion for a rheumy...they have a way of working better with other specialists that THEY recommend.

Are you being treated for your autonomic problems? In many cases they require yet another specialist (cardio) if you have BP and heart rate problems? What autonomic symptoms do you have? The low grade fevers can also be from autonomic...as temperature regulation is an autonomic function.

All these things are tied together and when you figure out which AI is root cause, then treatment options will be clear and you will finally get some relief.