Posted on 11/06/2011 4:08:30 PM PST by mupcat
Wouldn't you know, after all these years, my first post would be a vanity. Hope I'm in the right section, but if not, please move me.
My husband has just been diagnosed with Neuropathy, which I understand is a nerve disorder caused by some sort of trauma or disease to his nervous system. So far this has settled in his legs only. I guess there are quite a few symptoms, but for him it's coldness in his legs and an internal twitching which seems to bother him more at night when in bed.
I wonder if anyone here has or knows someone who has this condition and would care to share how they live with it, and what treatments, if any, seem to help. I guess it's not that unusual especially later in life. To answer one question that may come up, no he does not have diabetes. This seems to be a cause in many cases, but not for him.
Thanks so much for your help, I really appreciate it.
i went to 11 highly regarded doctors and ended up being bedridden with high medical bills. Finally went to a lyme specialist and I am walking again. I have my lfe back...so I can’t agree with your assessment as it pertains to my life.
I had forgotten about statins. They can make your legs hurt like hell.
My “husband” is a girl. I think you meant to reply to mupcat.
It is important to avoid injury to feet or legs, especially if poor circulation is implicated. I have seen a number of people with PN from various causes, and as far as I know it is not reversible, but progression may be quite slow. Initially it may be a mere minor nuisance, and let's hope it stays that way. Good luck.
Doesn’t diet Soda containing Aspartame cause Neuropathy and leg cramps?
BTW, I’m all for ANY treatment that works. If the Lyme treatment helped, I am very happy for you.
Thank you, Boop!
stop eating anything with chemical in it- homemade soups and stews ans chili’s only
nothign canned
lots of bananas and NO FLOUR (gluten free diet)
helped me A LOT with twitches and stuff like that
exercize with very lights weights adding only 1 pound per week
Fascinating! I don't remember him complaining about being bitten by a tick, but maybe so. I'll ask. Thanks so much, and many thanks for the prayers.
No, thank you! I’m glad you found a solution.
Actually that's encouraging and so far that's exactly what it is. Hopefully it won't progress any further than that.
ROFL, you let him get away with that!!?? I think you’ve gotten some good advice on this thread. He needs to see a neurologist and be patient, it takes time for nerves to heal. Sometimes this can be cured, sometimes all you can do is manage the symptoms. Ask his doctor if he’s exhausted all possible tests that would identify an underlying cause.
Thanks Brytlea, not sure we have one in our very small area, but it may come to that if it gets any worse.
Many people don’t even see the tick. They are so small. It can get in your hair or someplace on your body where you can’t see it and then you have no idea that you had a tick bite.
Prayers for your husband.
Try thiamine it is good nerve vitamin certainly won’t hurt as it is watersouble
I can’t give any straight up medical advice but my grandfather has been dealing with this for several years (He’ll be 100 in Feb) and although it’s slowed him down it seems to have effected neither his piss nor his vinegar!
Basically he’s become significantly less steady on his feet but this change has been gradual.....over the past 7 years or so. We’ve coaxed him into using a cane but at this point he’d really be a lot better with a walker or a chair. My understanding is that nothing can really be done about it but his quality of life hasn’t suffered. For example, last spring he hired a band and conducted 2 sets for his birthday!
He should stay active but needs to be careful. No ladders. No stairs (as much as possible).
Good luck, and my prayers are with you.
I had similar symptoms and they couldn’t figure out the problem. Months later I self-diagnosed myself with Lyme disease and went back to the doctors. The test was positive. I’ve been treated for 9 months and am back to running, etc. Lyme disease mimics over 400 disease...including, MS, Parkinson’s, ALS, etc. And when you get tested, don’t use the normal hospital labs...they give false negatives many times...tell them to send it to iGeneX. If you have any questions, message me.
Well, just don’t give up and be an advocate for him if he won’t advocate for himself. I spent several years with pain doctors before I found a good neurologist (because I had no idea what was wrong with me). They simply wanted to give me pain killers and didn’t run tests etc. I don’t have a complete diagnosis, but it was such a relief to have at least a name for my condition instead of feeling like it was all in my head. And I have to say, I was actually glad when my nerve conduction test wasn’t normal. I know that sounds a little crazy but it showed that things weren’t working normally. When your symptoms are simply something you can describe but no one can *see* you do start to feel like a nutcase.
Of course phantom sensations and stuff can be quite disturbing!
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