Skip to comments.Husband diagnosed with neuropathy---Vanity
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.
Was this peripheral neuropathy?
What an honest and forthright vanity post. I wish I had some answers for you, but I don’t.
I will however be carefully watching this thread as it develops, since I too have a few niggling little symptoms of this.
Best of luck to you both.
Uncontrolled diabetes is one of the big causes of peripheral neuropathy That’s about all I can tell you about it...starts at the feet cannot reverse it, I am sure his doctor has already tested for diabetes, if he doesn’t have that I would suggest for your own information The Mayo Clinic has a web site and you can search. WebMN also has a site to search for medications and/disease..
Are you sure it is not Restless Leg Syndrome? How old is he?
Were you given any more information? Did he have a recent trauma? Generally they look for the cause of the neuropathy then try to correct that condition. Does he have back trouble?
Prayers are with you.
IS HE ON STATIN DRUGS!? These types of drugs can cause peripheral neuropathy or other types of muscle pain or weakness. I have had several friends that had to be taken off these drugs, as it caused problems with their feet, where they even fell.
There are many types and causes of neuropathy, which means nerve death. Mine is/was in my feet. The pain was intermittent and varied from, ouch! to needing to sit down instantly regardless of where I was; once in the supermarket on a can display. The pain generally didnt last long, but was intense while it was there. It was treated with Gabapentin 200mg/day. But the pain has diminished over time, possibly because Ive had 4 operations on my feet to correct issues from running 15-20 miles per week for 30 years. I also havent run or even walked much in the last year, which might be helping. I do work out my legs daily on leg machines that dont involve putting my feet down.
I think general exercise helps tremendously. You might also look into various nerve supplements. Google them.
The stronger your husband is, from working out, the less the neuropathy will interfere with his life. The doctor who did the test poo-pood the other doctors diagnosis because I was really, really strong. But the electrical test (which measures the speed and strength of an induced signal down your leg) proved that I had about 25% loss. (He said, Squeeze my fingers. I said, I can leave here with your fingers.)
http://www.livestrong.com/article/35677-lyme-neuropathy-symptoms/ I have same problem, but it is lyme disease. Doctors are very ignorant about lyme disease. I would have him take the Western blot test and send it to igenex lab in california to see if he has Lyme. Other Lyme tests are a waste of time. Antibiotics did wonders for me. I have been on them for 5 years because when I stop, the legs go bad again. Other things that help are moist heat, magnesium, and Astaxanthin( found at health food stores.) Lyme specialists are hard to find. I have the name of a good one if you ever find you need him. Praying for you guys...
You know, I'm not sure, but believe so. I just read there is another one, but that one involves just one never (if I read that correctly) so since that doesn't seem to be the case I believe it is peripheral. Didn't want to call it that unless I knew for sure one way or the other.
Talk to your doctor about N-Acetyl-Cysteine (NAC) it’s an amino acid, builds glutathione in the body.
PN=Peripheral Neuropathy. I have it. It’s more a set of symptoms than a disease. I got the impression the doctors huff and puff and pontificate but really don’t have any idea what causes it. If the patient has high blood sugar, they will say that is the cause. If s/he has liver problems, then *that* is the cause. If none of the above, - sound of crickets. But all the above are just guesses.
With me and from my research I think with most everyone, it is more an irritation than a serious problem. Don’t expect the worst like total loss of sensation in the limbs - it is so rare that it should not be on the bottom of the list of things to worry about, but not even on it.
Treatment: socks. :-)
your husband is deficient in magnesium. get mag glycinate or malate and have him build up to 800 mg or so per day. ALL the twitching will go away as will/should the neuropathy.
Strip his diet down to meats, vegetables, and water with lemon or lime. If he doesn't see improvement in a month after sticking religiously to the diet, I'd be surprised.
I had similar symptoms; despite being a healthy weight and in good shape outwardly, I was sick as a dog, always cold, suffered from chronic fatigue, raging migranes, and digestive problems. In short - a hot mess.
Cleaned my system and am back to my old self again. Just got done hauling a cord of winter wood into the back yard and didn't even break a sweat.
Thanks so much for reply and kind words. Hope your sensations aren’t as bothersome as his.
First you need to question his docs as to why they are calling this a neuropathy. I agree with one of the other posts here that the symptoms you describe can be attributed to restless leg syndrome, but acknowledge that they can also be caused by a neuropathy. As was also stated on another post, diabetes is a common cause of peripheral neuropathy, so if your husband is diabetic this could be contributing. Ultimately, a diagnosis of neuropathy should not be settled on without good diagnostic evidence. Again, I would push his docs to tell you exactly why they think this is the diagnosis, and to tell you what alternatives they considered. A good physician should welcome these questions.
Does your husband have diabetes?
I ask because Neuropathy is a very basic word-term that applies to a broad variety of observable symptoms and can be the result of a large variety of causes; but diabetes is one possible type of cause and diabetes is also a more frequent medical condition these days.
Here’s a couple links that may help.
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.
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.
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.
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.
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
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.
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