[divingdeep]

Hi, I am new member of the boards, though I've been delaying my intro for some time. I have idiopathic sensorimotor neuropathy. My neurologist thinks it is rooted in an autoimmune disease -- like Lupus and/or Sjogren's -- that has yet to show up in my blood work. He said it is only a matter of time . . . but in the meantime, he has no answers, no treatment. A previous neurologist put me on Lyrica and then Gabapentin but both put me in a state of perpetual fog, so I took myself off them. I am not on any big pharma meds now, though more and more I am having a major problem with horrible muscle spasms waking me up and interfering with my life when I try to drive and walk and when am at work.

I am also in the care of an alternative physician who put me on a gluten free, no sugar, very low carb, very low diary diet, plus a load of supplements and also IV chelation. I followed his protocol religiously for about eight months, and when it didn't "cure" me, I lightened up and used it more as a guideline than as rigid rules. Nevertheless, I follow it more than not. It does help me in a lot of ways. He also put me on long term, low dose Nystatin for Candida. I find I do take a bit of a noticeable turn for the worse when I run out of Nyastatin.

Overall I have flares and partial remissions but that the prevailing pattern since 2010 has been insidious progression. For me the neuropathy is not mainly numbness, though numbness is an issue. My main problem is incoordination, weakness, balance, and often crushing pain, affecting my arms and legs. I have parasthesia all over, including my torso, and I have partial numbness on one side of my face. In the past several months, I've also had new progressive symptoms, like dry eye, dry mouth etc. etc. etc.

I have an appointment with a highly sought after rheumatologist (in my area) in early October. I made this appointment back in April and cannot wait! I am hoping upon hope she can shed light on the underlying cause of my neuropathy and whatever syndrome has been unfolding in my body.

Meanwhile, I apologize for not introducing myself sooner and I thank you for the many comments I've read here that have helped me as I was searching for information and experiences.

Sincerely,
Diving Deep

[Darlene]

Diving Deep,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Here are some forums for you to check into. Their are some great friends to assist you with your problems.

Autoimmune disease:
http://neurotalk.psychcentral.com/forum44.html
Peripheral Neuropathy:
http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[Kitt]

Welcome divingdeep.