Quote:
Originally Posted by Sheltiemom
Invisable and Amit -
Our kind of neuropathy is considered the more "rare" type according to the neuro who did my skin biopsies. However, other members here at NeuroTalk also have the non-length dependent type and know a lot about it (glenntaj for one). Had about half of the EMG testing, and nothing abnormal showed for length-dependent.
So far, mine has not been called idiopathic. Was diagnosed by rheumatology and my PCP clinically with the autoimmune primary Sjogren's Syndrome a month or two after the overnight burning started.
So I guess based upon everything combined I have that are so typical of it, a reasonable Dx would be Sjogren's although the labs for it were all normal. Sometimes it takes years for them to go abnormal. It's not curable.
You describe all the weird sensations so well, Invisable. Sometimes I have them in multiple places, other times not at any. Just curious: I also have itching, do you? Seeing the rheumy on 10/18, and will ask about it as that can also be Sjogren's - so just wondering.
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Well, lately in the scalp area, I could almost describe it as itching/prickling. Between that and the constant pin pricks shooting all over body every minute, and electric worms, I really am worried, if this continues to increase, I am going to need a straight jacket!
I have read that Sjogren's can involve itching due to dryness of skin. Eye dryness, mouth dryness are also common. I don't have these symptoms.
Sometimes I worry about MS, but spinal tap was ok. Hope that is definitive.
I saw the PA today at neuro's office. He was horrible. Treated me as though I was unreasonable to pursue a reason for all these sensations. I would like to see him prickling around the clock with no answers. I demanded a skin biopsy, he ok'd it with neuro, but insisted it was not useful. I realize the treatment is the same, but I would like to know if I definitely have SFN, can't understand why this matters to him. On the way out I informed the secretary that I will no longer accept an appointment with PA, Neuro or nothing. The last thing I need right now is a condescending PA!
He increased my Gabapentin to 400mg/3x a day, because of my increased sensations. Great, more weight gain and water retention!
Sorry for all the venting.......as you can see I am very physically and emotionally distressed tonight!