[jenng]

Hi there. I have been looking on the forum for a few weeks and really appreciate all the great information. My peripheral neuropathy started in my early 30's (I am now 43.) At the time it was just pins and needles/numbness that would come and go in the left side of my face, hands and feet. Occasional burning sensations by my achilles tendon, but nothing I would label as pain. At the time, I had a low-positive ANA and antiphospholipid antibody test, along with slightly drier eyes and mouth. That, along with a family history of autoimmune conditions pointed to a possible diagnosis of Sjogrens Syndrome with negative SSA-SSB antibodies. A rheumatologist put me on Plaquenil, aspirin and fish oil.

Things seemed to be stable until 2009, when I had an extreme period of stress with my mother diagnosed with incurable cancer. I began having more constant of the above symptoms, along with stabbing pain in/under my tongue. I had "perceived" weakness in my left thumb, muscle twitching, frequent headaches. A new neurologist diagnosed me with left-sided atypical migraine. He prescribed amitriptyline, verapamil, then added Vimpat (an anti-seizure med.) This did help the headaches and facial symtoms. Again, things seemed to stabilize until this November.

It was then that I had constant pain show up, in my left foot. It literally feels like my foot is in a vice. My foot cannot feel comfortable in a shoe. I have fatigue and increased pain with too much standing, muscle cramps and twitching. I have continued to have the left hand symptoms, but very mild compared to the foot.

I should mention that I have had several MRI's over the years--no lesions suggesting MS in brain, neck or spine. My lumbar spine showed several things--DDD, annular tears, slight spinal stenosis. We did a couple of steroid injections to see if that may be the issue, but they did nothing. I have had several EMG's as well, showing slowed conduction in the sural nerves. My auto-immune bloodwork continues to be periodically checked, and has always been negative for everything--except for the very first time. I continue to have normal motor neuro exams. My most recent EMG of my lower extremities in January, the psysiologist could not even find my sural nerves.

So I am waiting to repeat the EMG's-this time from a NMD doc at a teaching hospital. It seems the only things I haven't done are a spinal tap and a nerve biopsy. My current neuro and rheumatologist are basically shrugging their shoulders. I want answers, but it is slowly sinking in that I may not get one.

Thanks for reading my really long post!