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Foggy's "Invisible Illness" Support
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Non diabetic peripherial and chronic neuropathy

it's my story: i had a little numbness on my right foot, but not getting worse for years. this summer my left foot began to numb, then spread up. my muscles had cramps and have twitches on my feet. my left hand also had similar symptoms. I was checked by doctors and polineuropathy was diagnosed, a lot of tests were done. B12 deficiency was the official diagnose and once a month I get injection B12. but my syptoms getting worse and worse and I have a fear of being handicapped...what do you think? All advice are wellcome... i take vitamins, ALA....etc...

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My situation is much the same. I also take supplements - B12, ALA, magnesium, evening primrose oil and fish oil, and am going to get some B1 as well, although all my blood tests have shown nothing wrong. Like you, I worry about if it will progress, or maybe it will stay at a level I don't think it ever goes away, but perhaps we can find ways of abating it (my neurologist says it does one of the three - hedging his bets a bit there!). Best wishes for the future.

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Thank you for your comment! My main problem is that I do not know what is the so-called maximum of my PNP...how things are developping...and to what extent...

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i doubt anyone can know, my neurologist even drew a graph showing it either gets a bit better, stays the same or gets worse! Hey Ho.

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first I became very depressed by the whole issue, then I learned that there are better and worse days and that the PNP has separate life... and this is helped a lot...

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I also have non diabetic peripheral neuropathy . It started over 10 yrs ago in the toes of my left foot. It spread slowly to the toes on my right foot and has progressed about half way up my lower legs. I also have RLS. My family doctor was treating me with gabapentin and a muscle relaxer as I had no vitamin deficiency. I finally saw a neurologist a couple of months ago and he did an EMG on both of my legs. The neuropathy goes all the way to my knees. The doctor told me that he felt that it wouldn’t get any worse but that it would not get better. All we can do is treat the symptoms. He also told me that while it is not hereditary, I evidently have a genetic marker that gives me a higher propensity for having it. I too fear losing my ability to walk and becoming disabled. I started wearing compression socks about a year and a half ago. I’m a nurse and work 12 hr shifts. They do make my legs feel better at work. So much so that I have started wearing them all of the time. Oh, the neurologist also told me not to cross my legs anymore. There is a nerve that wraps around the top of your calf that gets pinched if you cross one leg over the other too often, for too long a period of time. I had a divot at the top outer portion of my calves from doing this. I hope this is helpful.

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Dear Daisy,

Thanks for the reply!

I do not know if I have an RLS or is it a symptom of the PNP (muscle-twitches). Not constantly and not everywhere, but in many places my muscles are twitching (so not my legs are moving, but the lower muscles under the skin). Did gabapentin work for you? pramipexol was prescribed but I did not dare to get it for the rough side effects. I prefer to take many Magnesium and I try to live my life, to sport .... My symptoms have developed for me in about half a year, and since they have just worsened, my legs also hurt (my muscle-nerve relationship deteriorated beause of PNP). Actually, it is not easy to be normal - in the midst of such uncertainty...

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Do you have pain(s) in your upper legs? I have very odd feelings in my legs, sometimes pains, muscle twitches etc. Sometimes there are things which worse than pure pains knowing their cause...

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ASK YOU GP TO TRY YOU ON FLUOXETINE - IT DEFINITELY WILL NOT MAKE YOU FEEL ZOMBIE-LIKKE LIKE THE GABAPENTIN, ETC. AND IT CERTAINLY HAS BEEN THE BEST DRUG FOR ME. ALSO CHECK IF YOU ON ANY BP MEDS AS CANDARSARTAN I WAS TAKING FOR OVER 3 YEARS CAUSED TERRIFIC PAINS IN MY LEGS, NOT COMPLETELY GONE BUT SO MUCH BETTER

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hi there,

im conducting research for my final year of uni regarding keeping active with reduced dexterity and hand strength, if anyone is able to complete my short 3 min survey about your condition it would really be of huge help.

surveymonkey.co.uk/r/QHMSV7N

thanks for your help

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As you have neurological issues - the B12 treatment is different. You should receive injections every other day until the improvement ceases. This is clearly laid down in the Folate and Cobalamin ( B12 ) Diagnosing and Treatment Guidelines - in the link below. Also taking a GOOD B Complex will keep all the B's in balance and B9/Folate/Folic Acid works with B12 in the body in an important way. Any Thyroid Test results with ranges ? Often present when B12 is low. How are your Folate - Ferritin and VitD levels ?

onlinelibrary.wiley.com/doi...

Your GP should have read the above Guidelines - sadly most do not :-(

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I was examined by many doctors and cures by my neurologist. i follow her, since I am not a doctor. every month I get vitamin B12 injection (1000 micra), and my blood test shows that i have not deficiency after taking it. And I'm taking some vitamins and others: d vitamin, coenzym q10, omega 3 fish oil, magnesium, etc. be careful, vitamin too much B6 can also cause neuropathy. I do not think there is a Bible for neuropathy, we are different in many aspects. I am thinking on taking cbd oil, so I am not a religiuos follower of my doctor (she does not like it)... :)

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Testing B12 whist having injections will show skewed results. Again this is mentioned in the Guidelines I posted for you above. CBD oil sounds a good idea ...

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You are right, but I cannot fight my neurologist, who does not want to inject more...and I am overwhelmed, many blood tests, MRs were done and they also checked my liqueur taking sample from my spine...I try to take high dosage of ALA, it also could help a lot

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Hey, I have idiopathic PN, have had it 10 years, same onset as you. Have had all the tests, several Doctors, take Gabapentin (doesn't help). It sucks, but at some point, you just have to accept it and move on with your life with this disability. Positive attitude is sometimes a challenge, but trust me, it will be your best medicine. Do everything you normally would do! Wear comfortable shoes at all times (I wear sandals 24/7, even in the snow). As for a cure, or even some relief, the only hope I see on the horizon, I wanted to share with you (and others). The company is small and privately funded, based in San Diego. I have no affiliation, other then I am seriously rooting for them? They are called WinSanTor and claim to have the cure for this disease, but they need to get their compound through FDA trials and this takes $ and time. Best case, might see it on the market in 2021 or so. Anyway check them out via your favorite search engine and study up on them. I have hope in them, I do believe they can help a lot of us!

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Hi, I am at the beginning of this state of unknown, because my symptoms started only few months ago, but they do not improve...just the opposite.

I suppose You are thinking on this new research: news.umanitoba.ca/study-fin...

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Yes, this is the same company and the initial part of their research. The article you copied is almost 2 year old. They have come a good ways since then. They are crowdfunding now and have a much improved website. These are signs of proof of concept in their early phase trials in Australia. I understand that this is all new and scary to you as I've been where you are several years ago. By all means, dig into every bit of info you can and educate yourself, and try what makes sense to you to help you feel better, just be prepared for the slow advancement of the disease and the lack of help the medical community presently offers. WinSanTor is our best hope!

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I am a baby in the sense that I'm getting to know the whole industry now. Thanks for the information, I've heard about the research, but this company is new to me. I follow what they do and I trust in God (or in Fate) ...

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