Small Fiber Neuropathy, Sojgrens, Hashimoto's

Posted by penn @penn, Mar 17 6:46pm

Hello, I have a Neurologist, I'm looking for a Rumatologist is there any criteria? I saw 2 but they said they did not have to see me anymore. My Primay Care said her Patients have never experienced that. She gave a name I called and I have to wait months for an appointment. Hard time eating, jaw seems a bit stiff when eating and the side side effects, hands dropping things.
Thank You!

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I can't respond to any of these as my PN is very different. I have never had pain -- just numbness and difficulty walking. For the record, I have learned to pay attention to my feet while walking. I always make sure my big and little toes are on the ground... I walk barefoot to get maximum effect, but also do this all the time while wearing shoes.... It helps a great deal with my balance. I also suffer from vertigo and this also helps at least a bit with that...... I am lucky not to have pain and can understand how difficult it is because occasionally my feet burn in the morning... removing them from beneath my quilt rapidly stops it .
One other thing I have found that may help those of you who get muscle cramps. Hylands produces excellent pills for this condition.. The muscle cramps, particularly when they reached my thighs, drove me crazy... I take two Hylands' tablets for muscle cramps at night and are completely free of muscle pain. They sell one for overnight use and another for use during the day which I have never needed.
I have no idea why I have never had any pain... I am 93, have had hypothyroidism since my forties and take 175 units of Levothyroxine. I also have a pacemaker and eczema == neither of which are linked to PN... My mother had PN also -- with no obvious cause. She never took any kind of medicine except pills for Hypertension... So I assume it is genetic.... My father had diabetes but I do not have it and my PN -- although it seemed to have begun with treatments for breast cancer 25 years ago, did not follow usual path... I had some numbness after treatment, then nothing for more than tenor twelve years ago when the tingling turned into the feeling that I was walking on bubble wrap. This progressed slowly and I am now numb beyond my knees. I can, however, walk well and quickly with a rollator..... It is all very odd..........
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My neurologist told me that PN is not genetic when I specifically asked about that when I was diagnosed a couple of years ago. Neither of my parents nor brother suffered from it. My neurologist is a professor at UBC (University of British Columbia) in Vancouver, BC, Canada and has a practice ( speciality in mobility cases) at Vancouver General Hospital. Are you sure that it is genetic? My neurologist said that it was neither genetic nor contagious- just random bad luck. I worry for my children and grandchild in their futures.

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@pnpam75

My neurologist told me that PN is not genetic when I specifically asked about that when I was diagnosed a couple of years ago. Neither of my parents nor brother suffered from it. My neurologist is a professor at UBC (University of British Columbia) in Vancouver, BC, Canada and has a practice ( speciality in mobility cases) at Vancouver General Hospital. Are you sure that it is genetic? My neurologist said that it was neither genetic nor contagious- just random bad luck. I worry for my children and grandchild in their futures.

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@pnpam75 Welcome to Mayo Clinic Connect. We’re glad that you joined the group!
From the little research that I did, PN is hereditary or genetic. This site is from one of the departments at the National institutes of Health.
https://www.ninds.nih.gov/health-information/disorders/hereditary-neuropathies#:~:text=There%20are%20no%20standard%20treatments,foot%20or%20other%20skeletal%20deformities.
Here is a discussion/support group specifically for those with PN. https://connect.mayoclinic.org/group/neuropathy/. There are many different topics and you could ask your same question there.
Do you think you can model to your children/grandchildren how to live with PN so that if they ever get it, they will have a positive role model?

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I had my first infusion of Rituximab yesterday. I promised to report on it and I shall. I'll let the mentors decide if it is of interest to anyone. I was fine all day and the nurse watched me intensly for any reaction. I had none at the fusion center. But later that eve I had very loose stools that went on a good while. No cramping or nausea, just total bowel emptying. Don't know if this was an allergic reaction or not. Also felt very over heated during night.
The next morning I felt as usual except for one thing of note: The neuropathy (My diagnosis, not seen by dr. yet) in my hands which had just started a few days ago, was gone. There had been a numbness which was replaced by a sort of vibratory feeling. Only thing different but signicant, I think.
My diagnosis: SFN of legs brought on by Sjogren's Syndrom. Loss of weight bearing balance and muscle wasting. Have been doing IVIg since last Sept. with no improvement. Biopsy of rt. leg showed zero fibers at ankle and knee. My immune system was taking them out as fast as they could be made. More tomorrow perhaps.

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