Is this normal for neuropathy? Can't seem to find answers anywhere :(

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Hey everyone. I'm gonna try to be short. I'd like to know if this sounds like normal neuropathy or if I should be worrying about something else.

I've been having heavy legs and off balance since last August. Crept up on me. Kept going to doctor for answers and found low thyroid. Fixed that and a few weeks ago a spot in the back of my head started burning and few weeks after that my right side of face was tingling/numb w tip of tongue numbness and bad taste; *no drooping. It was also in my forearms.

I went to 3 ER's where they all said neuropathy and to see neurologist. Well as of 3 days ago, it started in my knees (falling asleep feeling) and has went up my thighs. It feels like they're asleep/tingling/tight/and heavy. Almost like you're going to have a Charlie horse but don't. It's worse when I sit down and at night and it feels better when I'm up moving around.

I saw a neurologist yesterday and she said because I'm overweight that it's putting too much pressure on my spine. I have MRI and CT of brain that came back fine as well and blood work that did too except for sugar being a tad high.

***My questions are: is it normal for neuropathy to spread? And is it normal for the thighs to feel this way?***

It's really freaking me out and I'm not sure whether to overreact or underreact. I have another appointment w a different neuro on Tuesday but is it okay to wait that long?

Can someone please help me? Thank you.

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  • Posted

    Hi there, some of your symptoms are similar to mine (I have peripheral neuropathy) but I only have mine in my hands, feet, legs and arms. It did spread tho, it started off in just my ankles and feet 5yrs ago and has slowly built up. Have they prescribed you anything for it yet?
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    • Posted

      Thank you for replying!

      Topamax and Prozac and multi vitamins is what she gave me for now and she peered a CT & MRI on my neck and spine.

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    • Posted

      Mine started in 1999 in two toes. Slowly went up legs. Started seeing neurologist in 2006. Have been to 9 neurologists, multiple other specialists, geneticists ets. Today i am wheelchair bound and affectieng arms.

      no other issues. Even Mayo clinic could not offer anything except idiopathic neuropathy primarily motor...no help anywhere. Good luck

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