Anyone Have Neuropathy?

Updated on July 14, 2011
K.G. asks from Fort Lauderdale, FL
11 answers

Hi Moms,

If you look at my past history of questions you will see that I've been a medical mystery, lol..... Long story short after seeing a bunch of different doctors, MRIs, CT scans, I was finally sent to a neurologist yesterday.... He performed the nerve conduction tests on me (the shock one and needle one)... I have been having numbness and tingling in my right hand and right leg/foot..... The nerve test came back fine in my hand but not in my leg/foot.....He "thinks" it could the early stages of neuropathy... I have to go back in 10 days to do all the tests over again because he wants to compare them... Per his words " I don't like the answers I'm seeing".. Meaning that he assumed I was going to be fine but by the shock test, my leg was taking too long to respond to the shock....
Any insite on Neuropathy? I read a lot of people with diabetes have it but I'm not overweight at all.. ALL my blood work I've done has come back totally fine (including all B deficiencies)... All tests I've done came back totally normal as well....I'm 32 years old~
I try not to research things on the computer because it will say you have a hang nail-cancer, so I try to stay away from researching..
I was VERY scared to hear I had MS but the neurologist said by all the tests I've had, all the MRI's, the physical evolutions, etc that he does NOT think it's MS at all.... I pray he's right because MS REALLY scares me!
If you have it-
does it come and go?
Are you on medicine for it?
Do you do physical therapy for it?
Can it get worse over time?
Does it spread over time to different parts of your body?
What age were you diagnosed with it?
****Can you still exercise regularly at full capacity?*****
Does anything you do make it worse/better?
Thanks moms!!!
PS if it ends up being neuropathy, I do NOT plan to take medications for it, ONLY natural supplements... I've read horror stories about people taking meds for it and then having to take more meds because of the side effects of the first meds... I don't react well to medication in the FIRST place... I will be seeing a holistic doctor if this is what it is :0)

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S.S.

answers from Miami on

I had it in my early 30's from a drug that I was taking. It was only in my feet and it was mostly while standing but on occasion when sitting or laying. I had it about 2 years. I don't know how I came across this remedy but I tried it and it worked. I put Vaseline on my feet at night before bed and put socks on. THAT'S IT! I had noticable difference in a few days. It kept decreasing and it never came back. These days they have that drug, Lyrica but it has side effects like all meds. I took it briefly for arm numbness from herniated discs and the next thing I know I have muscle weakness in my legs so I only took it like 2 weeks.

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J.S.

answers from Tampa on

Hey,
Sorry to hear about your medical issues. :( I have neuropothy in my left thigh. I have had it for several years. It is a pretty severe case and I have gotten quite used to it over the years. After trying MANY meds to help with the pain from it, I have found the only things that seem to help my particular case at all are neurontin and also a topical ointment called lidocaine cream. (it is similar to the stuff the dentist puts on your gums prior to getting the novacaine shot) LOL! My experience with neuropothy is that my left thigh is numb feeling on the outside, meaning if you were to draw a line down the center of my thigh and wrap it around to the back almost to the center on the back, that is the outside area that is numb. It is from right above my knee to about 3 inches below my hip. It always feels numb, however, it HURTS like hell if anything touches my leg. (sick trick) Light touch feels like sharp knives or needles, and firmer touch is less uncomfortable. It feels almost like a briuse feeling. At times when it is at it's worst I will go to sit down and the skin will stretch and it feels as though my leg is ripping open. It hurts so bad. One of the worst things I have experienced so far is when I get goosebumps on my leg. (for any reason) They cause the skin to stretch, and the whole ripping flesh feeling comes back. It stinks! Oh yeah, getting a sunburn is horrible too!! I wouldn't do that if you can help it! Water hitting my leg in the shower is painful. Pants can be painful. Even the bedsheets laying over my leg can cause discomfort. At times I feel as though a bunch of tiny bugs are crawling all over my leg. My leg is usually warmer than the rest of my body, which is a good thing since it helps to prevent the whole goosebump thing. LOL! Shaving my legs has become impossible, so I have switched to using nair. It is one of those things that most people simply won't understand. They really have no concept of how something can feel numb, but at the same time hurt. I never would have gotten it before either, but now I totally understand. It can be really frustrating, and I wish you the best. I have to admit though, you can and will get used to it over time though. It is something that will eventually just become part of who you are, and you will adapt your life to accomodate for it and how you do things. I have. It takes some time, and depending on how severe your neuropothy is, it may be a constantly changing and evolving thing, but you will be fine. It feels like the end of the world right now, I know! You will make it through this one though, and you will be ok. If you ever need to talk, feel free to send me a private email and I will give you my contact info there. Good luck!!
PS- please make sure that your doctors have ruled out TIA as well as everything else. They tend to think that younger people are not as likely to be having tia's and it happens quite often that they are. I was also misdiagnosed for 6 months with similar symptoms, and told that I had 3 brain "cysts" which turned out to be blood clots. I ended up in the hospital as I said, 6 months later after having the first 3 of 6 major strokes, because I had a damaged corotid artery. All because I was in my late 30's at the time, and the doctors didn't think stroke was possible because of my age. I ended up a year or so later with the neuropothy as well, but I was having TIA's and major strokes too, and the whole time I had been experiencing my mini strokes and going to the doctors for my symptoms, they kept giving me the wrong diagnoses. Ok, I am getting off of my soap box now. Good luck! Let us know how you are doing please! :))

2 moms found this helpful

D.B.

answers from Boston on

I don't have it, but I have many friends/colleagues who have dealt with it. It often accompanies diabetes, but it occurs with many other conditions (some diagnosed, some not). Like you, several of them have been "medical mysteries" with a mix of symptoms. As you have found, many conditions have overlapping symptoms, and often diagnosis eludes the doctors until things are really bad and symptoms are full blown.

One of my friends was one 30 prescriptions. Yep, 30. Now she's down to 4 and working on getting off the last few. She had various prescriptions being put on top of other ones - some were to treat her condition, and others were to treat the side effects of the first drugs.

Some of them had fluctuating neuropathy, others found it pretty constant. Yes, it gets worse over time, particularly if the cause is not determined or, even if determined, not addressed. It can spread but it's primarily in the extremities - but "how far up" it goes can worsen.

All of them have reduced or eliminated the neuropathy through nutritional means - boosting their immune system. This is too much to put in an email but I'd be happy to connect them with you and see if you like what you hear.

I am happy to see that you have not gone overboard in researching on line. There is SO much scary stuff out there, and it's hard to evaluate the credibility of sources. Moreover, so many "established" medical protocols have been refuted or withdrawn - studies contradict each other, and many are not blind trials (they are conducted by the people manufacturing the drugs!).

I'd be happy to chat with you more. There is hope!

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L.C.

answers from Washington DC on

I had neuropathy...
It turned out to be a pinched nerve in my neck making my left hand go numb. I went to PT and did the exercises they prescribed. I cannot do any exercise that is jarring - no jumping, no running, no step aerobics, etc. I can swim, walk, lift weights and the like.
It did get better, but only by doing exactly what they told me to do.
Now, if I feel the tingling coming back, I get back to the exercises and the pool...
LBC

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P.W.

answers from San Francisco on

Interesting article on pain in last or this week's Time Magazine.

I also suggest Neurontin.

1 mom found this helpful
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C.B.

answers from Boston on

My father had poly-neuropathy, meaning the nerves endings in all his extremities were atrophying. He was 83 when he died 2 years ago, and probably since his mid 50's he started having symptoms. First just tingling in his hands and feet, much later he had trouble flexing his feet and wrists, and eventually he walked very "ploddingly" by picking up his whole foot and plunking it down flat since he could not flex his ankles (nor could he stand on his toes). His calves ended up losing a lot of muscle tone since he could no longer move his feet, and they looked very skinny. In his 80's this caused difficulty with balance. From what I understand it is a slow dying of nerve endings starting in the extremities. It is not life threatening but for someone like my dad who was an avid tennis player until his early 70's (he switched to doubles since it covers less space) it was very bothersome. I am not aware that he was on any medicine for it, not that there was anything that could be done to slow or stop the progression. However, medicine is forever changing and after you get a diagnosis I would do a lot of research. Good luck.

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N.B.

answers from Sarasota on

Did they check for multiple sclerosis or a vitamin B12 deficiency? Both issues have the same characteristics as neuropathy. Sometimes the one of the conditions is diagnosed first and then after a few years, they find that it turned out to be the others. I have had MS for the last 7 years and treat it with acupuncture. My husband is a Chinese doctor and has also treated neuropathy as well. I don't take any of the western drugs and you would never know that I have MS. Stay on top of it and if you aren't happy with what your doctors are saying, keep on top of them.

Good luck.

N.

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J.S.

answers from Miami on

Neuropathy can result from toxicity and lack of nutrients in the body that leads to nerve damage. Clear out the toxins and balance the nutrient levels and the body repairs itself. You may want to explore natural supplements that nourish the nervous system and also a detoxification protocol that could clear out anything that might be damaging nerve cells. Supplements with sea vegetation such as spirulina, chlorella, kelp, phytoplankton, etc., are all good for the nervous system.

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H.T.

answers from Hartford on

My situation is a little bit different, but was recently diagnosed with chemo induced neuropathy. Mine primarily effects my right leg and foot. Because I am going through the process of a stem cell transplant I am on lots of meds for pain, they gave me a drug called Neurontin to help, it does help but I still have numbness in my right foot. For me it does not come and go, and most pain medicine does not help. Mine has not spread but I was not diagnosed that long ago, so I cannot answer that question. Because I have other health problems I am not sure this answer is helpful, but that is my experience. I am 35 years old.

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K.M.

answers from Tampa on

Oh please see a chiropractor, I am betting you have bones in your spine out of place and pressing on your nerves- hands get thier nerve supply from the neck-any history of whip lash kind of injury- it doesn't have to be a car accident- bike, fall, etc can also do this. Leg nerve comes from low back &/or pelvis. These need to be be checked for pressure on nerves.
Your blood work is normal. That is great.
Don't have surgery or start taking drugs until you check this out.
best,k

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M.P.

answers from Indianapolis on

I have neuropathy in both feet. Mine is as a result of having Lupus. I finally convinced my doctor to start me on B12 shots. B12 helps with the nervous system and blood system. I am always borderline anemic and took B12 as a young girl. At that time I was having Migraine headaches and the doctor my Mother worked for was an old country doc. He had me get one shot a month for about 6 months and the headaches went away for years. In researching Lupus and neuropathy I kept running across different things that finally lead me to B12. Have your doc check your B12 level. Good luck!
If you are Diabetic you are also prone to neuropathy of the feet.

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