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.

[mupcat]

your husband is deficient in magnesium. get mag glycinate or malate...

Interesting, I'll make a note of that. I take magnesium, but he does not.

[usconservative]

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. :-)

I have to go either completely barefoot, or put on slippers or shoes. Socks alone make my feet feel like I'm walking on a bumpy floor. Barefoot I can still feel hot/cold most of the time, which helps the 'sensation' of walking barefoot.

I'm also very "picky" on the shoes I wear. Some feel much better than others.

[Cowgirl of Justice]

I am so sorry.

I know that for a Charley Horse, a bar of soap under the sheets helps. Don’t know why but a pharmacist told my friend’s dad to do it.

Also, before bedtime, have him vigorously wiggle his toes for several minutes. See if that does it.

But definitely try the bar of soap.
http://www.peoplespharmacy.com/2007/10/29/soap-remedy-is/

[Grizzled Bear]

I’ve got painful nerve damage in both arms, particularly my hands and elbow joints. A B-Complex supplement every day helps keep it to a tolerable level.

Prayers up for you and yours.

[dawn53]

Well don’t settle for a diagnosis based on symptoms. Get him to a neurologist and let the neurologist make a proper diagnosis.

There are so many causes of neuropathy (as can be seen from this thread) that you need to try to nail down a reason for the neuropathy. If it is from a disease, then you need to know that. If it’s a vitamin deficiency, or medication related, from trauma, or hormone induced that needs to be checked out.

Neurologists can help nail down a cause through various forms of testing.

(I have MS...I don’t have neuropathy, but have symptoms that could be mistaken for neuropathy but are a result of damage to the CNS not peripheral nerves.) Not saying he has a disease, just saying it’s important to find out the reason he has the neuropathy.

[mupcat]

question his docs as to why they are calling this a neuropathy..... can be attributed to restless leg syndrome.... tell you what alternatives they considered.

All good points you make. I'll have him push the restless leg option again. He has another appointment in a few weeks. BTW your screen name certainly fits the topic.

[jennings2004]

I should have mentioned: My wife has 12 rare diagnoses. The combination results in unbearable pain. I don’t know how much is associated with her neuropathy, per se. Fentanyl patches have been helpful in reducing the pain level from all her conditions to a tolerable level.

Again, Bless you both.

[RegulatorCountry]

My late father had problems with idiopathic peripheral neuropathy, meaning that the cause was unknown as opposed to, say, diabetic peripheral neuropathy. It affected his feet, primarily.

Evening Primrose Oil, pharmaceutical grade, was helpful to him. Laser treatment applied to the soles of his feet was successful, but as we were cautioned, many discontinue treatment because pain is the first sensation to return, and it lasts several months before the onset of more normal sensation. He elected to just live with the numbness rather than endure the months of pain and discomfort.

[mupcat]

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

Good heavens, I'm almost embarrassed mentioning my husband's condition considering what you're going through. Prayers, and best wishes for a full recovery to you. Oh, and yes, I'll remind him of the Lyme possibility.

[Bizzy Bugz]

I have had neuropathy for 10 years after having chemo. It can be very bad. I take neurontin 4 times a day and it helps very much. Something to mention to your Dr.
Hope this helps. Prayers for you both.

[mupcat]

Put a bar of Ivory soap (other soaps can be used, but Ivory soap seems to work) in between your husband's ankles.

Oh dear, not even sure how to answer that one, but, you bet, it's worth a try. Tape one on each ankle?

[Mountain Mary]

http://www.youtube.com/watch?v=r_fFekBgrvA

http://www.emaxhealth.com/1275/82/34152/capsaicin-cream-relieves-nerve-pain.html

A family member thought this nerve cream was effective.
Good luck, mupcat.

[Ditter]

This is an interesting link. I read all the replies all the way to the bottom. While a vast majority say the soap trick does work, the last reply say she came up with the idea as a prank years ago. Wonder what the truth is? I have leg cramps occasionally I think I will try the bar of soap under the sheets.

[mupcat]

There are more cases of tick illnesses( lyme, bartonella, etc.) than AIDS cases and for some reason no one is talking about this

I know many years ago, I was bitten by a tick, and was told the test for Lyme disease was not reliable at best.

[Tommygun99]

If this is a peripheral neuropathy I agree that it would be best to consult a neurologist. Sometimes this type of neuropathy results from an auto-immune disorder. This is when the body’s immune system, for whatever reason, turns upon itself and attacks nerve tissues in the body. The illness is named Guillain-Barre Syndrome or GBS. This condition can strike anyone at any age. It is a very rare illness and can lead to total temporary paralysis within a period of 24-48 hours. Recovery varies from a total recovery to partial recovery. There is also another variation of this illness which is called CIDP. This stands for Chronic Inflammatory Demyelinating Polyneuropathy.

Please look at the website for the GBS/CIDP Foundation for more information on this rare and quite obscure illness: http://www.gbs-cidp.org/index.html.

Diagnosis is confirmed by drawing fluid from the spinal column. If the protein level in the fluid is abnormally high then GBS is confirmed. Nerve conduction studies called EMG will also help to confirm a diagnosis.

The reason I know so much about this illness is that my son came down with GBS/CIDP in 1986 at the age of 6 years old. He was left with permanent nerve damage in his hands and feet. Quite a blow for a little kid who loved to play T-ball. My wife and I know more about this illness than the average medical doctor.

I hope and pray that your husband does not have these illnesses but I would encourage you to see a COMPETENT neurologist. This illness is no laughing matter and can be a life changer, even to the point of being a life taker.

Best wishes .... TG

PS. There are several well known celebrities with this illness. Actor Andy Griffith, Sportscaster and former NY Knicks player Bud Palmer. Author Joseph Heller (Catch-22) had this illness that ultimately led to his death. Check out his book “No Laughing Matter”.

[mupcat]

You might want to search and join forums that discuss the various types of neuropathy

Good advice. I wanted to come here first. Everyone has been so helpful, and have offered some interesting theories I hadn't thought of.

[Catfish2]

http://www.underourskin.com/

Nothing more needs to be said. The flim in the link is winner of five film festival awards. Scary.

It’s lyme disease. Get help.

Almost lost my wife with Lyme. Went from vital, go-getter to a basket case within 6-months. Johns Hopkins figured it out, thank God.

She’s back with us now, thank the Lord.

Best of luck to you.

[Major Retired]

I was diagnosed with PN about 20 years ago. Feet, legs, arms and hands involved. All the neuros that have checked me say it is idiopathic (unknown cause). The checks range from blood, spinal fluid, Lyme...up to DNA testing for Charcot Marie Tooth (CMT). CMT is for hereditary connection. All results for every known disease that was faintly connected was negative hence...the idiopathic designation. Nerve conduction tests revealed progressive dying nerves. Through the years the PN progressed until I am presently in a power wheelchair. I can walk a little but legs weak. As I can’t feel anything from the knees to my feet when I try to walk it is like walking on stilts. My balance is terrible. My beginning symptoms were foot drop caused from deterioration of the tibia muscle along my shins. Only pain I have ever experienced with it was intermittent shooting pain down legs to feet during the first few years. I tried gabapentin (always sleepy) and Lyrica but side effects were worse than the medicine. My main complaint from a pain standpoint is the coldness in my legs. I began having cold feet just after returning from Vietnam in 1970 and the coldness has progressed up to my thighs now. Perhaps I got too much Agent Orange while in Vietnam. Anyway, I have always felt that I was a bit lucky because I haven’t experienced severe pain with the PN. I have to keep my legs very warm to counter the creepy crawlies in my thighs. As a remedy sometimes when it gets to severe i take a very hot bath...hot enough to make my legs very red. This helps before I go to bed at night. About a month ago I started to work out at a fitness center. Full body and leg exercises on the machines and I feel a little stronger. I guess it looks a little strange to see a guy rolling around in a chair from machine to machine, getting off, climbing on the machine, do the exercise then roll to the next machine on my list but so far its working. I wish I had some kind of concrete items that would help your situation but I can say that my coldness can be countered by hot baths. The surprising thing about the coldness it that it is not a natural coldness...it is nerve coldness caused by the nerves dying.... it is on the surface and deep inside to the bone and takes a long time to warm up the effected area. If I can help in anyway...let me know. Salty

[don-o]

My mother had it. The doctors she was seeing just threw drug after drug at her. It took a trip to Mayo Clinic in Minneapolis to get her treated properly. As far as I know, she’s either in remission or the meds she did end up with are doing the job.

[Ax]

Mine started a few weeks after my second triple bypass in 2008. Docs tell me it’s because of the bulging discs in my neck. I’m not ready for more surgery at this point. The spinal surgeon I saw was aptly named “Dr. Dorcil.” I just finished seeing a chiropractor and got not relief. I got no relief from my neurologist, either. I have it in both hands and both feet. I can probably live with it for a while, but I DO want to be free of this. I am a brave of 69 summers.