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Anyone else with full body numbness?
I've had small fiber neuropathy for years now with some amount of numbness throughout my body. I recently had an MRI with contrast which appears to have drastically exacerbated things, I've lost lots of sensation throughout my body especially my face. It's been very frightening. Anyone else out there with full body numbness? Are you able to function?
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Welcome @lmn2003, I see that you also posted in another older discussion where the original person that started the discussion is no longer following Connect. @sharka @sunnyflower have mentioned numbness all over the body in other discussions and may have some experience to share with you.
You mentioned that it seems to have been made worse following your MRI with contrast. Have you had a chance to discuss the increase in side effects with your doctor to see if they might have some suggestions to help?
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1 ReactionNow I don’t have full body numbness but all over facial . It has gotten so bad that my gums are swelled considerabley and my teeth have shifted. Unbearable uncomfortable and very difficult to eat. I do want to add that I have sjogrens and trigeminal nueralgia . I have been taking immunoglobulin therapy and after 4 sessions no relief . I’m still hoping something improves
Yes. Like you, I have some level of numbness all over. Some areas I feel nothing and in others it’s a very diminished sensation. I’ve likened it to wearing a wetsuit or latex gloves. I feel pressure all over but not light touch in many areas. Even when I feel touch, it’s very diminished. When the neurologist poked up and down my leg with a sharp stick it was yes, no, yes, no as to what I could feel. Yes, move one inch and no, move another inch and yes. Strange.
I’ve been dealing with it for 50 years due to a rare hereditary neuropathy with pressure palsies. Some areas get better or worse but it’s never gone. MRI and CT contrast has not impacted it but once when I received a novacaine shot from the dentist my face stayed 100% numb for 9 months. I thought it would never go away but I guess the nerve took that long to regenerate. My nerves are easily damaged. I took strong antibiotics 8 years ago (Flagyl and levaquin) and lost my taste and smell forever. The neurologist said permanent nerve damage. What a loss.
I can still function but some fine motor skills like turning pages, buttons, etc. are challenging when you can’t feel them. Hot/cold, wet/dry are challenging. So yes I’m able to function, but the numbness can be very frustrating. After 50 years I’m pretty used to the new normal though. Pain on the other hand is exaggerated and excessive compared to the level of trauma. Wacky nerves.
I hope you regain some sensation. ❤️