I'm still in shock over this and found this forum searching for answers. Please excuse my rambling as I wasn't prepared enough for this.

Just got the call this evening from the neuro's office. My tests were back in December. I was told I have small fiber neuropathy, autoimmune, proablably scleroderma. Well, I do have morphea scleroderma, positive ANA with a titier of 1.7. This has been going on for several years, and several doctors to find it. I lost my job in Feb 08, as well as health insurance. Husbands income a little too high for state aid, but did find Cleveland Clinic has programs. Went to my primary in Sept. and he sent me to the neurologist. All types of labs, and EMG, QSART, Tilt Table and punch biopsies.

He wants me to start IV gamma globulin - once a month. No insurance and I don't know yet what I qualify for. It could take another few months to find out and I've read it's very expensive. Don't know what to do here.

The pain/burning in my feet started around 2002ish... my rhuem at the time told me I had a systemic variant of scleroderma and all tests and treatments were geard towards that for roughly 4 years. Got undiagnosed by a sclero specialist at Cleveland Clinic 2005. Dummy me stayed with her for a few more years until she was too busy to see my when I had pnuemonia.

My neuropathy has progressed over the last 6 years (at least that I can tell) to my hands & forearms, with sensory loss and numbness in my ankles, but also involves my digestion, my BP, and "relations" with my husband.

These are questions for my neuro, but am posting here because you've been there. My concerns are:
1. What are my long term expectations? (Since it's A.I. it will progress.)
2. Since it's been 6 years and it's that involved, will I regain any of it with IVGg therapy?
3. What will happen if I can't get the IVGg therapy? A wheelchair in my future?
4. I'm a Graphic Designer by trade, too much time/typing on computer cause my hands to feel like they're run through broken glass and mashed with a mallet - will I be able to work again?

Anything anyone can share is greatly appreciated. I'm scared about this, even though I'm happy IT finally has a name!

Thanks in advance!
dmouse