Originally Posted by whitechinacat

Well, the new neurologist had a cancellation today so I got to see him right away.

It was a good appointment. I am used to walking away from appointments with my family doctor or rheumatologist feeling that I've learned nothing and have no plan for moving forward. It's frustrating to say the least. The neurologist listened to my history and did a neuro exam. The only abnormality there is that my knee reflexes are quite uneven, but he said he wasn't sure why. He said that my story is quite complex and he can't think of any particular neurological disease that would account for my symptoms, but he is willing to investigate and try to help me feel better. That's a wonderful thing to hear! He admitted that it would be sort of a fishing expedition, but he was willing to cast a wide net and see what he could find.

I am having my MRI of brain and spine repeated (it's been a year) to see if there have been any changes. Depending what it looks like he may also redo the NCV/EMG at a later point. He also wants me to do a sleep study and to wear a holter monitor (because of the palpitations/fainting).

I am going to try Lyrica as well starting at 75 mg at bedtime and then 75mg twice a day. I am quite interested to see if it will make a difference.

I'm just relieved to have some direction here.

Originally Posted by whitechinacat

Hello! I've been reading through past threads and finding some very useful information. I wanted to introduce myself and ask a couple questions...

I'm a 30 year old woman with a mystery autoimmune disease. The only thing I've been diagnosed with is small fiber peripheral neuropathy and it's definitely my most bothersome condition/symptom. I know it is caused by an underlying disease process, but no one can figure out what that is so it isn't currently being treated. I am seeing my neurologist again on Feb 24 and would like to have some intelligent questions to ask him. I like the neurologist and he is willing to investigate my symptoms, but when my bloodwork showed a positive ANA (indicating autoimmune disease) he passed me on to the rheumatology department and I only see him every 6 months or so.

I'll try to be brief with my history, but there's a lot to say! I was healthy until 2 years ago when I was pregnant with my daughter. At first I noticed some patches of tingling on my back that would come and go, as well as the odd sensation of water washing over my skin. Then I started getting heart palpitations and bouts of lightheadness and vertigo. Then bouts of diarrhea that would be preceded by intense tingling in my legs and a feeling of being very cold and shaky. One day I had an episode where I couldn't think clearly or put the words together to speak, then I got tingling on one side of my face and one arm, and both legs. I felt weak and tired and strange. The only reason I didn't go to the ER was because these are like the aura symptoms I'd had before with a migraine and I assumed that was happening again. This time I never got a headache, but the symptoms disappeared after about 3-4 hours. I saw my doctor who ran tests to rule out a TIA. The MRI of my brain, EKG, echo, and bloodwork were all normal so she said it probably was an atypical migraine.

After my daughter was born I felt great for about 3 months, then I crashed. One day I was using a pair of scissors and my thumb went numb and didn't recover for MONTHS. I started getting more episodes of tingling, especially in my feet and lower legs. More dizziness, bouts of diarrhea with leg tingling and shivering, and migraines (left side headache plus tingling in my face and blurry vision). It got worse and worse until I ended up visiting the ER thinking I was having a stroke or something. However, all the symptoms come and go and generally don't last more than a few hours at a time (though they will return later). The weather was becoming colder at this time and I also started to notice that my feet were not just tingling and numb but also felt very cold to the touch and were a grey colour with blotches of black, white, or purple. I also suddenly started getting bad heartburn (GERD) and mild swelling in my hands and feet in the mornings.

I saw a neurologist who requested another MRI of my brain and the whole spine. It was normal. He also did an EEG which was normal. The tests he did to see if I could sense vibration and temperature in my legs were abnormal and he told me that I had polyneuropathy. I had a NCV/EMG which was normal. He ran a lot of bloodwork and discovered the positive ANA (1:640 speckled) along with low ferritin and pre-diabetic blood sugar levels (A1c of 6.1 but I passed the 3-hour GTT). I was referred to a rheumatologist.

That was a year ago and I still have no answers. I take Nexium for heartburn, but no other medications. I take an iron supplement but my ferritin is not increasing. I also take a multivitamin, vitamin D, B6 & B12 & Folate, and fish oil.

Interestingly, over the summer months my neuropathy all but vanished. I felt sure that this meant that the neuropathy was caused by lack of blood flow to the nerves since cold weather causes my blood vessels to spasm closed and warm weather allows them to remain open, but perhaps there is another explanation. From May to September I had NO tingling except the odd bit in my face along with a headache and I felt much less fatigued. I had none of the episodes of tingling, weakness, dizziness, diarrhea, extreme cold sensations, etc. either. In October on the first cold day of the year, it all came back. The GERD, hand/foot swelling, palpitations, and some muscle pain and stiffness did not go away over the summer.

Sorry this is so long! To wrap up, my rheumatologist has no idea what I have. She's run all the antibodies for the connective tissue diseases and come up with nothing twice. My ESR/CRP have always been normal. I've been tested for liver/kidney function, thyroid disease, cryoglobulins, and lots more. All negative. This winter I've had a lot of muscle pain (like the flu), muscle spasms in my calves at night, lots of tingling and numbness all over, intense dryness and pressure in my sinuses and behind my eyes, plus the dizziness/tingling/diarrhea episodes. My rheumatologist speculated that I may have autonomic neuropathy because of these episodes as well as my heart palpitations and low pressure and feeling cold all the time. I've been referred to a gastroenterologist to investigate the chronic diarrhea. I've also been referred to an endocrinologist because I have PCOS (polycystic ovary syndrome) and had thyroid surgery years ago - the function has always appeared normal, but I only have half of the gland.

Anyway, that's what's going on with me! Some days I feel okay and can function pretty normally (though I never feel completely normal) and others I am just miserable, scared, and feel like I can't go on like this any longer. Any suggestions on what to ask the neurologist? Testing? Should I ask him to try one of the neuropathy drugs I've heard about like Gabapentin or Neurontin? Cymbalta? Lyrica? I know that treating the underlying condition is most important, but since no one knows what it is...

Thanks!