Hi All, someone had commented, on one of my posts (where I talked about possibly having Small Nerve Neuropathy with autonomic involvement) saying that s/he had a long history of the same and when I was ready to discuss, s/he could share their experience... I had responded "great," please message me, but didn't receive a message. I am now losing my mind, because I can't find the original comment!
If you are the one who said you had experience with small nerve neuropathy with autonomic involvement, and could share... please message me! I am interested in hearing about your experience! Thank you.
<It has happened to me in the past - and was due to the change in water. So hopefully it will settle down now you are home.
Remember for now that WebMD covers all eventualities - but I hear you. My friends on LupusUK deal with this stuff on a permanent basis - if it gets that far they will welcome you to chat because they are a lovely lot and VERY well informed.>
No, but thank you! That was a good post too... but the one I am thinking of, the comment said specifically that the person had experience with small nerve neuropathy with autonomic involvement, unless I am losing my mind! Which is quite possible!
At least you remember it!!!! Thank you! I’m not going crazy! It had to do with the post where I wrote, “...mope today, cope tomorrow.” And he or she said when I was ready to cope, they had some experience.... maybe comment was deleted. (?) thank you for looking! Xxx
Not a worry , I’ve had foot problems way way before PMR ,steroid injections ect insoles from hospital ,cold feet , no high heels 👠 sob sob and at 5 foot 1 I would sooner be walking and cricking the neck . Carol
"My grandmother would have said I had neuropathic feet because I am a Pisces, and she was a 19th-century lady not a hippie but definitely full of superstition! What is your sign?
Mope, then cope is sound advice. When you feel like coping, I'll tell you a bit about my struggles with small fiber cum autonomic neuropathy/sjőgrens. The autonomic part is limited and doesn't seem progressive, for what it is worth. And some meds help, if you want to try.
For now, just Rant. Best wishes."
in Walking on, walking on glass, about halfway down
PMRpro, the day you posted this response, I wrote a BIG thank you, to you, for finding this post and re-posting it. In reviewing my original post today, I see my THANK YOU, to you is not here!!!!! Not sure why.... maybe I forgot to hit "Reply."
Anyway thank you so very much for finding joaclp's comment and reposting, I really appreciate it!!!! ❤️
Hi, sorry to cause you puzzlement. I am the one who made that comment. I just got back, more or less, from a long neurologist appointment! I'm tired and I have a lot to digest. Then I'll be in touch. Would you prefer that I message you since this may not be of general interest? JOA
Hi, my questions regard small fiber neuropathy and autonomic involvement. Seems I am a bit complicated in my medical presentation. Apparently I am not the only one with sweats from PMR. I have had severe pains in my legs that I no longer have. Like everyone else I just want the correct diagnosis at this point. dx PMR about 2 months but I have been living with this well over 2 years and going crazy trying to figure it out.
Most people have sweats with PMR, more extreme if they have GCA - it is part and parcel of almost all autoimmune disease. Then they are put on pred - it can also cause sweats.
Hi, Sorry to hear you've been living with this for over 2 years. : (
It doesn't sound like Small Fibre Neuropathy to me.... but I'm no doctor! : ) My symptoms (in order of appearance) were: tingling, numbness, pins & needles, and electrical shock like pain in my feet. And these symptoms have since, slowly moved up my legs... I also have numbness and tingling on my hands.
I think that the above symptoms fit well. Another question if I may be so bold. Has anyone had facial edema. I know it is a symptom of Lupus but it doesn't seem to fit PMR. Other symptoms definitely do as well my responce
to Prednisone. Whoops new apple computer. It has gone away after about a year . I was not on prednisone at the time. Very perplexing.
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Hospital Dr has said I need to stop pred?
Update on who to believe 
Who had an appointment with Dr Rod Hughes recently 
Isolation question: caregiver who works outside the home
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