Husband diagnosed with neuropathy---Vanity

[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.

[grame]

I soak in Epsom salts to get my magnesium. Well, my feet anyway.

[expat1000]

It was meant to be encouraging. :-). But also honest. If he is not diabetic then there is no reason to think it’ll get worse. In fact mine virtually disappears for weeks at a time.

Another thing is, while the foot pain can be bothersome when I go to sleep, it doesn’t last, so don’t be quick to start taking painkillers or sleep meds. After some period of time the pain will subside on its own. If he is like me, it’s never there in the morning.

I saw the recommendation for magnesium. Supplements are worth a try but keep in mind the above - there could be long cycles of more or less sensation, so if he feels better in a few days or even weeks, it doesn’t mean much. Probably a cal-mag is a good idea in any case.

[MSSC6644]

What I’m about to tell you sounds like alchemy, but I know it seemed to work for my dad, an M.D. who believed in and practiced alternative therapies. I lived with him for the last five and half years before he died at 97. Long story short, he got a machine that emits infra red light. It’s called Light Force Therapy: http://www.lightfortherapy.com/.

[pankot]

Had the same problem once. Even the feeling of worms crawling under my skin in the muscles. Turned out it was a bad disc in my back, Check with a Neurologist.

[chooseascreennamepat]

I have read most of the first 50 replies. I agree with some and some sound as if they came from an Indian Medicine man. I CAN tell you about my situation/experiences.

I am 70 YO, have had a 4X bypass 10 years ago, recent (2 years ago) knee replacement and last December I had 9 discs fused and 2-6” screws from the lower vertebra to the pelvis bones on both sides.

That said, I have had neuropathy for about 5 years. I also have RLS. (in spite of Rush's blather about it, I have it!) My Dr. says I am only borderline diabetic. I just checked my Blood Sugar and it came in at 90 (lowest in years).

In any event, as a result of the surgery I had to take Percocet and/or Vicoden. The Vicoden seems to have essentially killed the worst symptoms of the neuropathy. Just some tingling. No shooting pains as before. Also the RLS is GONE. Completely! YMMV and good luck but consult competent Doctors and get a second opinion.

[Yaelle]

Coconut oil! It could possibly even cure it.

Not on his feet; he has to eat it. Buy pure virgin organic coconut oil only. Health food stores will have it if your grocery store does not. Try to work up to 3 tbsp a day for him. You can cook your meat and veggies in it, but you should also try 1-2 tbsp in a smoothie for him (and you, it’s so healthy.).

Also, two things we are all deficient in, that will help as well. Have his vitamin d level checked with a blood test. If it’s under 50 add more d3 supplement until it’s 60. Get another test to make sure. Under 50 is deficient. Don’t listen to a doc who says it should only be 25. Research has changed that. Our bodies need more tp prevent and fight illnesses and conditions.

Magnesium is the other thing we are all deficient in. Try capsules of it, around 400-600 mg, and if he can take more, more. Too much will loosen the stools, if that happens, scale back slightly. Get some magnesium oil and bathe in it. If you can’t afford it use Epsom salts, but magnesium sulfate (Epsom salts) doesn’t last in the body as long. Topical magnesium will not loosen the bowels.

But for sure he should see great reduction in pain or a cure from coconut oil.

[cherry]

look into restless leg syndrome as well....

as I understand it, neuropathy affects millions so join the crowd...all is not lost....

[Grammy]

I have neuropathy as a result of chemo. Mine ranges from what I call “zingers”... like someone just jabbed you with a long needle, to crushing sensations and heat.

I was also having serious hot flashes about a year after chemo, and the Dr put me on an antidepressant. He said it helped with the hot flashes. I noticed that my neuropathy improved significantly at the same time.... in fact, they seemed to be tied together. I would get a hot flash at the same time I got the crushing feeling in my feet.

After 6 months or so on the antidepressant I felt better enough to go off them. I still get zingers once or twice a day, and my feet feel hot all the time, but I no longer get the hot flashes or crushing. I have learned to just kick the covers off my feet at night.

[fatima]

We will pray mupcat,nice to see you.:)

[MarineMom613]

bm for b/f. He has same thing. Prayers for all sufferers of this degenerative disease.

[bksanders]

Faith accompanied by the prayers of believing Christians
Second Opinion
Baclofen
Third Opinion
More Faith…

[mupcat]

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.

Thanks expat1000, that's certainly reassuring! Treatment socks? Not sure that would help unless it went all the way up his legs. :-)

[mupcat]

Did they do an EMG test, or just assume that based on his symptoms?

Not to my knowledge, I''ll ask him. Think this was just a diagnosis based on symptoms.

[jennings2004]

My wife has two types of neuropathy. She has no feeling in her feet. Medicos tell her that w/o treatment, the lack of feeling will gradually progress up her legs and if it reaches her abdominal area, the effects are very unhappy.

Treatment in her case initially was IVIG. However, her venous condition deteriorated over time because of the frequency of infusion, so her treatment was changed to twice a week chemo consisting of subcutaneous injections of Vivoglobin which is given at home. More recently the treatment product was changed to Hizentra. You can search both of these products on line for many more details.

Physicians conversant with this condition and its treatment have been difficult for us to find. But, I encourage you to continue looking because of the importance of slowing the progress of the effects.

God Bless you both!

[usconservative]

Hello mupcat. There's much you didn't include in your post such as, is your husband a diabetic? Has he suffered a back injury? Is he subject to inflammation or stiffness in his lower back?

I have peripheral neuropathy in my feet. Mine started after my first major back surgery in 1993, and has gotten worse with three addtional major back surgeries in 2003, 2005 and 2008.

I don't feel the the bottom's of my feet most of the time. They're often "numb" and feel like I'm walking on a bumpy floor. Other times I can feel some pressure and hot/cold, but most of the time they feel numb "from the inside out."

At times I get muscle spasms down the back of my left leg that can last for minutes, hours or sometimes days.

Sometimes the neuropathy works it's way up my legs from my feet, often making my calves and knees feel "cold" and feeling like I'm getting stung by bees. Those symptoms have lasted from days to weeks before subsiding.

I can tell you that there are many causes of neuropathy and any neurologist (I've been to 5) worth their salt will tell you that the chances of ever finding the direct cause is so remote, that they typically don't even try. Trauma to the spine such as I had, chemical exposure, and sometimes genetics has a role to play. My neuropathy is complicated by having Ankylosing Spondylitis, an inflammation disease which causes the lower spine and SI joints to spontaneously fuse or develop bone spurs. My Neurologist tends to think that my AS has contributed to my neuropathy.

There really only two pieces of advice I can give, having lived with this since 1992.

First, find a competent Neurologist / Neurosurgeon who'll make sure you receive an MRI with Contract, and a CT Scan if needed. They'll want to look for structural damage causing pressure on any nerve roots in your husband's core. He/She may also recommend a Nerve Conduction test to determine the level of Neuropathy. That same neurologist can prescribe any number of medications that will help alleviate your husbands symptoms. Keep in mind, everyone's different so it may take awhile to find what works for your husband. Some of these drugs are pretty strong and alter one's brain chemistry to "turn off" the pain/numbness signals and affect one's ability to think or be clear-headed. I can't possibly urge enough patience in finding the right drug and dose that works while allowing your husband to "feel like himself."

Second, exercise helps. Improving core strength and taking off any excess weight certainly helps take pressure off the root nerves improving their ability to heal (if they are able.) Nerves heal very slowly if they heal at all. In building the core muscles and minimizing midsection weight, we improve the chances for healing, and improve our long term ability to stay self-sufficient. Even though I have neuropathy in both my feet, I was able to recover enough sensation in my right foot to feel feedback from the gas and brake pedals in my truck and drive again.

I've also gotten well enough that I can climb ladders again with some confidence to get on my roof and work on my amateur radio antenna's when needed. It's been a VERY long road back to get to this point. I'll never have "normal" feeling in my feet again, but I can manage with what I have. Improving core strength is what did it for me, and I've had no worsening of my symptoms since working on my core strength. If anything, they've improved.

Best of luck to you and your husband, please do drop me a freepmail if you have any questions. I'm obviously not a doctor but I've had to deal with this since 1992 and have learned the questions to ask and the answers to look for.

[mupcat]

If this is related to diabetes or often accompanies diabetes, remove all sugar and yeast from his diet--Go all fresh

Nope, not diabetes, thank heavens. Getting him on that type of a diet would be, shall we say, a challenge. Good for you, much more willpower than he would have.

[mupcat]

Thanks, Wuli, for the links. No, not diabetes.

[usconservative]

Doesn’t diet Soda containing Aspartame cause Neuropathy and leg cramps?

Lack of hydration (water) can also cause severe leg cramps in some folks. Never heard of aspartame causing neuropathy but the reality is modern medicine doesn't really know how to diagnose the root cause of neuropathy anyway, so I guess anything's possible.

[mupcat]

Ask your Doctor about Baclofen.

Thanks for the suggestion, empressword, I'll write that down. Glad your husband is much better now.

[Ditter]

I will keep up with this thread. My husband suffers with leg problems. He has trouble walking and has fluid in his legs and feet. He is diabetic and had a double bypass 4 years ago. No tick bites so far as we know.

He has been to at least 4 doctors trying to figure out why he has so much trouble walking and pain that comes and goes in his feet and legs. Not one of the doctors has called it neuropathy but that is what I diagnosed from WebMd. None of the doctors have called it anything, they just send him on to another doctor. Very disappointing.