Quote:
Originally Posted by DeannaWright
Thanks, jenng! I've wondered for a long time if I had an auto-immune condition that isn't showing up on tests yet. So many of my symptoms seem to fit, but like you, they're all negative. I even have the chronic dry eyes that someone with Sjogrens would have, though I realize that you can have dry eyes without it being because of Sjogrens.
It's interesting that you mentioned you were also 32 at the time you were diagnosed. One of the scariest things for me is not knowing what this will mean for my quality of life in 5, 10, 20 years from now. If you don't mind me asking, what has your experience been?
Thanks for your response again! It's comforting to be able to talk to other people who've dealt with this.
Thanks, glenntaj. I don't know exactly what I was tested for, but I'll definitely ask on Monday. Are you saying that these are the tests that should be run, if they haven't been already? There's so much information and it's all a little confusing to me right now, so I just wanted to be sure! lol
Autoantibodies to Peripheral Nerve Antigens
Asialo-GM-1antibody
GD1a antibody
GD1b antibody
GM-1 antibody
GM-2 antibody
GQ1b antibody
MAG/SGPG antibody
Sulfatide antibody
Thanks again for your responses!
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Deanna,
I know, the worry about the future is unfortunately something that tends to stay with you having this condition.
From age 32-39, I primarily had just pins and needles sensation in my feet and occasionally my fingers. My eyes seemed drier and also mouth, but not nearly as dry as a Sjogren's patient. I always tested negative for Sjogren's antibodies, but the pattern of neuropathy fit the profile. From age 39-41 I dealt with parasthesias in my face and tongue--the left side of my face would feel numb, and I had jabbing pain under my tongue. Also had frequent headaches with this. My neurologist treated it as atypical migraine, and started me on amitriptyline and verapamil, which really helped!
From age 42 until now, my neuropathy pain has seemed to ramp up. Although I have sural nerve damage in both legs shown on EMG, my left side seems to be the one most actively affected. Now I have burning, stabbing, tightening pain in the foot, along with numbness. Some motor involvement has cropped up in the last 6 months--my last 3 toes are difficult to move, and I have muscle cramps and some twitching. I get mild ankle swelling on both sides. My arches are seeming like they need more support, and this may be to some mild muscle wasting.
They are monitoring me through EMG's, but no mention of IVIG. My doctors are probably more conservative, but I have been to the University teaching hospital for EMG's and exams. My feeling is they are seeing if the weakness will spread from my toes or not. I am walking just fine, and passing their clinical strength testing. My treatment right now is just symptom/pain control. I have started the supplements suggested by this forum.
My recommendation, since I have 11 years on you--keep at a healthy weight, try gluten-free to see if your symptoms improve at all. Keep physically fit with a sensible combo of aerobic, low-resistance weights, and stretching. And, if you can, try not to worry. That part is incredibly hard!!! But I look back at my worrying and it helped nothing and I can't get that time back. At least if you do your best to care for your body, you know you are doing what is in your control. Oh yes, and listen to your inner voice--if you have a doctor who isn't measuring up to your needs, absolutely shop around until you find someone who is willing to look after your best interests. Feel free to PM me anytime.
