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Undiagnosed, numbness, tingling, Muscle weakness and more
Brain & Nervous System | Last Active: Mar 2, 2022 | Replies (19)Comment receiving replies
Hi @jimhd and thanks for your comment. I guess we all suffer a lot no matter what end of the spectrum we are with regards our pain levels. It's very tough being in chronic pain. It does seem like I was hit with something particularly nefarious though, unfortunately 🙁 I have had no muscle or skin puncture test. Excuse my ignorance, but is this the same or a different procedure to a skin biopsy? (which I've also not had).
I was also thinking about asking about a nerve biopsy along one of the dermatomes where I describe pain or get fasciculations. But I feel like this won't be offered to me due to lack of EMG / NCS finding.
If the DNA testing you mean are from the blood tests I listed (like HLA-B27) then the answer is no, I tested negatively for that gene. I tested negatively for everything and / or all numbers were normal with one exception: I had vitamin D insufficiency (not deficiency). I am supplementing for that now... presumably it was caused by being caucasian and stuck indoors for 20 months... welp!
EDIT: just adding this comment here because I can't seem to edit my main post at the moment. I also have had skin rash and discoloration along two dermatomes. Steroid cream helped reduce the rash, but I was left with permanent skin discoloration. My left foot is hotter than my right. In general the left extremity is much worse than right. Although the symptoms seem symmetric, just not at the same intensity, which is what makes it asymmetric.
Replies to "Hi @jimhd and thanks for your comment. I guess we all suffer a lot no matter..."
Rachel also referred to the skin puncture test. I had it done in the neurologist's office and if it was painful, I would probably remember more details. A muscle puncture test was done at the university hospital in Portland, Oregon, about 3 hours from my home. Unlike the skin puncture, the muscle puncture test was painful. The tech put a large bore needle in, and I was to flex that muscle. He did 4 punctures, starting in my hip, and progressing downward, the last one being at the base of my toes. It was bizarre that I felt nothing when he did that last one on the top of my foot. I learned a lesson from that - never walk barefoot because I could hurt myself without knowing it. I haven't walked barefoot for a long time because it's painful in the balls of my feet. I don't understand how my feet can be numb and at the same time be painful.
The skin puncture revealed that I have SFPN, idiopathic. I think the muscle puncture was to assess how far up my legs the neuropathy was doing its thing.
Jim
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Hello and welcome. I'm sad to read your story especially at your age. A few thoughts...I do feel a missing puzzle piece is the Skin Punch Biopsy, given your circumstances. This procedure is typically performed when EMG/Nerve conduction studies prove normal. Given what I'm hearing, my opinion is that it should be ruled out as to not conclude Small Fiber Neuropathy. Genetic testing and spinal tap for auto immune deficiency findings may also be worthy (if not done already). Sending well wishes all the wayyyyyy
to Ireland. Best of luck in your journey.
Rachel