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.
Thanks goat granny for your response. No, he's had all the tests, and as I said at the beginning, this doesn't seems to be the cause for him, although that's one of the first things they check for.
I have idiopathic Peripheral Neuropathy, which means of unknown cause. I had no idea how common that is until I was diagnosed. Have been tested for all of the causes my neuro could think of and none have been positive. I recommend he find a good neuro who will test him for what can be tested for and not give up. Obviously things like Lymes (and there are OTHER tick diseases as well), diabetes (probably the most common cause), autoimmune problems, vitamin deficiencies, lots of other things. And the symptoms can vary as well, and sometimes they can wax and wane. I wouldn’t say it’s a great thing to have, but there are worse things too.
My husband used to have a lot of spasms, etc., in his legs, after having back surgery for 3 broken discs, they were so bad a times, driving or walking very far, was concerning, sleeping wasn't easy either...eventually a specialist put him on Baclofen, it's been quite a few years now, it didn't totally stop the spasms, but they are much less frequent, and not so severe.
Sorry to hear about your husband’s condition.
You said he was diagnosed with neuropathy...what led to that diagnosis?
Did they do an EMG test, or just assume that based on his symptoms?
HAve him tested for Lyme. I was sufferening from Neuropathy In my left eye and in both of my feet. One blood sraw and a test from Ingenex later, I not only had Lyme, But Erhlicia, BArtonella and Babeosis. Been on IV meds for the last 6 weeks. My vision has returned and my feet only hurt some of the time. Still have a long way to go, but it’s doable.
Seriously, at least humor the lyme thing.
You know, that's what I thought at first, but it's there all the time. Not sure he's asked his doctor about that, but I'll find out. 81 tomorrow, but doesn't look a day over 60.
I agree with others. I wish I had answers for you.
The internet can be a wealth of info for health advice, keeping in mind that the advice may not be entirely correct but always worth investigating and then asking your physician.
You’ve made a wise decision to network and ask others. The first time doing this can be awkward. But you will get answers and advice that may lead you and your husband to other sources of good info. You might want to search and join forums that discuss the various types of neuropathy.
http://www.healthboards.com/boards/index.php?gclid=CP-L2oGho6wCFUGo4AodiTBy2A
When faced with problems go outward instead of inward. Ask others and investigate. There are always others that have similar problems who can offer support or advice.
Has your husband been tested for Lead Poisoning? Or for B vitamin deficiencies?
I have it, too. Some days it is worse than others. My neck is fused from c-3 thru c-7, and my surgeon thinks there is a relationship between my severe whiplash and the PN.
No, I just asked him, and he said the only trauma is living with me. :-). No, no back problems.
Thanks for those. Best medicine there is.
Put a bar of Ivory soap (other soaps can be used, but Ivory soap seems to work) in between your husband's ankles.
Then good-night, sleep tight.
Thanks Scythian, for the suggestion. He certainly will.
I see people are commenting about restless leg syndrome. Tons of articles about RLS being a symptom of tick illness. Tick illnesses are spreading rapidly, and medical community is not keeping up. There are more cases of tick illnesses( lyme, bartonella, etc.) than AIDS cases and for some reason no one is talking about this.
http://www.wellsphere.com/lyme-disease-article/restless-leg-syndrome-as-a-marker-for-unsuspected-chronic-lyme-disease/348430
I have had idiopathic neuropathy in my hands for about 20 years (first appeared for me in my late 30's). "Idiopathic" meaning, "we know you've got it, we don't know why."
Originally mine was believed to be nerve entrapment from my profession (software developer) but neither MRI nor nerve conduction studies have ever found any specific location for the entrapment.
Good news for me is that it hasn't gotten progressively worse, and in many ways was the most troublesome when I first noticed it. Once I got used to sleeping with it it's not so bad. I hope your husband will have a similar outcome (knocking wood.)
What is his history with Chicken Pox, Herpes, or Shingles? Those are degenerative causes, but they can do a lot more now with anti-viral drugs. Again, good news is that the few people I know personally found the worst case to be at the outset, as I did. There is so much uncertainty and not knowing scares the crap out of you. Plus, you actually do learn to sleep through it, or if the pain is very bad, to wake up and do something for a while until you can stand it -- like FR -- or get tired enough to go back to sleep.
Mayo Clinic's web site is good. So is neuropathy.org. You might also want to check the web site for restless leg syndrome. People who have peripheral neuropathy in the legs are much more likely to have RLS. The web page at NIH is pretty good (a little alarming, but it's a scientific description, not a support group.) http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
Keep us posted, and good luck.
Lyme should always be an underlying consideration today depending on where you live.
I’ve been treated for Lyme twice but have never had symptoms other than aches, flue like and bulls-eye rash. I know others that have not been treated can have lingering and very serious symptoms. I like being and working in the woods on my property and now I’m always wary using coveralls bloused boots and Permethrin and deet.
Be careful about “Lyme specialists”. I’m not saying there isn’t a possibility of Lyme dz, but there are a LOT of quacks out there. In the medical community they are known as LLDs, “Lyme Literate Docs” and they are not well regarded at all.
I have it. A neurologist told me there are three things that can cause.
1) Diabetes
2) Alcoholism
3) They have no idea
The restless legs at night can be taken care of with a sleeping pill. I’ve been told that Niacin can help. However, one of the side effects of Niacin is blood sugar spikes. My advice is this: He’s going to have to learn to live with it. There’s really nothing that can be done to fix it. Thankfully, he and I both got it in our later years.
Thanks LowNslow, very encouraging. I have heard that in many cases it just goes away on it's own.
You ever try inversion? I have a friend who found disc problems causing neuropathy were really helped by hanging upside down in a doorway for a couple of minutes a day. I was skeptical but he says it really helps a lot.
No, no statin drugs, in fact he only takes one BP pill a day, and a multi vitamin.
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