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Foggy's "Invisible Illness" Support
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I'm new here and my Peripheral Neuropathy is progressing fast..

Hi, Six months ago I had pins and needle tingling in my feet. I went to doctor when it started to affect my calves. After nerve tests etc I have been diagnosed with sensorimotor peripheral neuropathy. Well, after six months my feet are quite numb and legs up to knees too. No ankle reflex any more. Last month, my hands started tingling and are now going numb. I've noticed 'odd' feelings in my face over the last few days too.

I have had numerous blood tests and all are normal and my Neurologist says 'Sometimes we never find the cause'. Well I am very worried that it is progressing so fast.

Two questions really - Is it usual to progress at this speed? When and where will it stop? Other peoples experiences would be very informative. I feel so alone with this and the future is scaring me.

I've started taking vit B and alpha lipoic acid, just in case they may help.....

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I have peripheral neuropathy caused by chemo . I find I just have to try and keep going good luck.

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Tall Keith, having been there myself (but with different nerve damage - for me it was the nerves in my neck and oesophagus, leading to dysphagia - difficulty swallowing) please have a serious look at the link between a vitamin B12 deficiency and peripheral neuropathy, do you have any of the other B12 deficiency symptoms listed here difficulty-swallowing.com/s... . Please also note that for nerve damage you will likely require sublingual methylated vitamin B12 (not all B12 is equal and cyanocobalamin is fairly useless compared to methylated B12), there is a Jarrow formula I have listed on my blog that I cured my nerve damage with. I also gave it to my father as he was getting out of bed in the mornings and finding himself stumbling a lot. He also had tingling and numbness and this was reversed within a few weeks of B12 supplementation. However due to the degradation of the myelin protecting your nerves you do need to act fast to ensure you can reverse it before it does permanent damage. The only thing to note with B12 supplementation, other than it is water soluble meaning you can't overdose on it, is that your symptoms can get a bit worse for a few days before you start feeling better, and if your spinal nerves have a bit of damage it isn't uncommon to get other B12 deficiency symptoms turn up to the party for a few days too (my father had hallucinations one night as he wanted to fast track his healing and so was taking 5000mg per day, if that happens you do need to drop the dose for a bit). I list the protocol I used on my blog link above in case you want to have a look. Also, be warned doctors don't get B12 deficiency at all, there is so much to it, but here is another article explaining a bit more about the 'silent epidemic' of B12 deficiency out there... chriskresser.com/b12-defici...

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Which B12 do you recommend?

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I use Nu U 1000ug. Are you seeing a neurologist? I've just had a nerve biopsy to try to find what is causing it. Blood tests were ok apart from p-anca.

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Did the biopsy show anything I am relunctant to have it?

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Biopsy showed nerve damage, but not the cause. Dead bit of ankle is hardly noticeable now after 2 years. So - for me a waste of time, but it might have shown something....

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Hi, here's a good article on B-12 and the best kind to take. chriskresser.com/b12-defici...

Hang in there. I'm still searching for answers too.🔍

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Dear Tall Kieth - I started with P N in 2011 with symptoms similar to yours.

After tests the Neurologist diagnosed and my doctor confirmed the problem and advised it was a symptom of old age, the deteriation of the brain and there was no cure. Pain started in in my legs and I still suffer intermittent pain and have used various pain killers with little effect.

The most serious problem is the shedding of flesh in my legs - arms and worst is the flesh off my bottom it is very painful when I sit and I resort to carrying special cushions where ever I go. Another symton is the dropping of the big toe which causes unbalance and tripping. I resolved this by binding my toes together.

Don't take the above as the moans of an old man, life has been good, well upto 2011 And I adapt to the situation when ever it is possible. I wish you well Kieth keep up this form of research. Pete h - Bristol

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Many thanks for replies. It seems I am not alone. My best wishes to all of you who have been suffering for longer than me.

I've just ordered the B12 - I'll try anything, and it looks to make sense. I got hold of my blood results and the B12 is 270 so not really low but I'm no doctor.... Its axonal, so dont think it will get better - I just dont want it getting worse.

I just cant understand why it is progressing so quickly and the doctor can't see a cause for it. I was under a huge amount of stress 7 months ago but that's the only thing that changed when it started. Also recently had an infected cyst under an impacted wisdom tooth that had been rumbling for a few months. It was cut out a month ago.

Otherwise as fit as a butcher's dog. Now this.... Cant say I'm enjoying life at the moment, daytime TV is about my limit.

I'm only 63 years old - so not really what I would call 'old'!

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Same for me. I am 41! Did u find out anything?

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Hi bent, Well after nerve biopsy and all the tests the bottom line is - they dont know what caused it and therefore cant treat it. The biopsy did show nerve damage but that it was inactive. And its not got any worse (or better!) and thats how it is...... so hoping for no change is the best I can hope for. Still mobile and no change last six months so could be worse. Good luck.

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Does it affect the face at all? Im getting odd sensations in the skin and not sure... Anyone else get the same???

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Keith, yes it does effect the face (on me) just a little. And yes to moving fast. I start taking 300mg daily and by four months I was up to 3600mg daily. I was told by my GP to stop drink alcohol, which I didn't till I was taking the 3600

daily. Mine was cause by the alcohol. Damn. So I quit drinking and now after three years of the terrible pain it seams to have leveled off. So, if you drink I would stop completely. I hope this helps, everything people say about PN is true. Good luck. Eddie

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many thanks eddymo. I didn't drink much and now not at all. I saw my neuro this morning and he says - yes it is moving fast isnt it! I have amtyplitine for pain but dont need much. I am going to see a rheumatologist as it may be vasculitis related (popping 30mg steroids just in case in the meantime). Hope your pain continues to go. Keith

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Keith, that's good to know that you quit. One other thing maybe this may help you, I know it helped me. I cut down all the sugar I could, organic or regular, soft drinks, fruit juices anything I could think of. And (knock on wood) I see a small change for the good in my condition. I was taking 3600mg daily of Gabapentin daily. Now I take 1200-1800mg daily,1200mg at nite. Nite is usually, no always worse. The pain is in my feet. The pain , numbness and the burning pins and needles was always in my feet. Hope this gives you some hope that the condition could ,possibly, maybe with hope get a little better. Eddie

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thanks eddymo.I like a couple of pf bitter when I'm out.I might try to stop.tho' will really miss it

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Hey, I was just reading all of the different replies and thought I would add one more. I can agree with the B12, but I instead of the subliminal I take the 1cc injections . The routin I used is; 1cc per day for 5 days, 1cc per week for 5 weeks and now suppose to start 1 shot per month. I am doing so much better, it is hard to believe. I really started seeing results some amazing results by week 2 and I continue seeing improvements. Although I still have the numbness and the occasional shooting pains at night, but this is better than all the time. Hope this helps everyone.

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I dont understand. What did u take?

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B12 injections - can be purchased on-line ....

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Many thanks - Four days of 1000mg vit b12 so far. I'll report back any changes later......

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Well, three weeks B12 didnt do much I can notice, but I may be getting closer to the cause of my PN.

The positive P-ANCA in my bloods is suggesting vasculitis caused neuropathy. Still waiting for consultant to diagnose.

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I would suggest the 5000mcg of B12 as your result was so low. If it is Jarrow lozenge you are taking - keep under tongue until dissolved. Also take a good B Complex to keep all the B's in balance.

How is your VitD level ? VitD is anti inflammatory - so am guessing yours will be low.

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Does it never get better again?or once feeling is gone thats it?

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I don't know! It only seems to get worse. I'm hoping it may get better but most I read seems to say not. If it would stop getting worse that would be good.

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Mine got better for several years, as long as I took 2400 mg of Gabapentin. Then, it seemed to not work anymore. So, my doctor has moved me to 600 mg of Lyrica. It hasn't improved me much yet. Hopefully I will improve eventually.

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Yeah I've been diagnosed with it too...having a lot of falls and don't know what to do..doctors have not been helpful...but I will try the B12 for a while and see how I go...

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Have you been tested for B12 ? Also Folate. They work together in the body. Once you are supplementing B12 blood results are skewed. Do you have any gut issues or taking medication thst could affect absorption ?

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Hi! I have been diagnosed with multi peripheral neuropathy without cause, three years ago. Everything I read tell me to keep exercising and swimming. I have been doing that and my condition is a bit stable. However, I can't drink even a sip of alcohol. If I do, my feet and legs get worse and then I have to take powerful painkillers. I am also use a device that gives electric shocks in my feet to relieve the pain. So, my advise is: EXERCISE as much as you can!

Sorry for not being of more help.

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Hi. I have the same problem and speed. Did u find the problem?

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I've had mine for 6 years and am blessed that I have no pain or tingling, can still run and hike - for how long I don't know - and only have limited numbness to the bottom of my calves.

Don't allow your doctor to dictate your life future. "Sometimes we don't find a cause" is an accurate reflection of PN diagnosis - much of the time it IS of undetermined origin - HOWEVER - his capitulation to the disease...at YOUR expense and suffering, is not acceptable...if these words are coming from your family GP. Do what I am doing. My GP immediately referred my to a local euro. I allowed my neuro to go through all blood and urine (did they do urine analysis for heavy metals / toxins ?) tests. I am, as I write this, awaiting my second urine test result - a 24 hour drop as opposed to a one-time specimen - to see if anything turns up. Even before this last urine test, my local neuro voluntarily admitted he was stumped and asked if I wanted to go to a large hospital (Barnes, St. Louis - rated as one of the top ten in the US) to see a neuro at Barnes. I said YES. I had already looked at Barnes, as they are the go-to place for many illnesses and injuries and they are n my insurance / provider's network. He gave me the option of St. Louis, Indianapolis or Chicago hospitals. You must speak to your neuro - assuming he referred you to see a neuro and you're not still stuck with your general / family practitioner ? ! Medical is all about advocating for yourself, TalllKeith. If you don't look out for yourself ...? Get a referral to a major neuro specialist b4 it is too late. Good luck and God Bless. Will say a prayer for you tonight. Rory1957

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Im am going through this! Scared out of my mind. Your comment cought my eye because I have found high levels of toxic mold in the lower level of my rental home. I feel as if it is from that and on my way to the hospital today for testing. I hope you find answers and I'd love to know what happens. Please keep us posted! I've been told by my neurologist that she cat help me.. I'm so frustrated with no cause or diagnosis other than "idiopathic progressive neuropathy" I'm losing my life day by day :(

Good luck to you! I hope we all get some answers soon! This is life changing and needs to be better researched.

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PS - Have they checked for Guillian-Barre Syndrome ?

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Hi,

You have got further than me in that they havent classified my peripheral neuropathy. I have had mine for 5 years. The intensity isnt constant. Iget pins and needles in both legs below the knee and burning. My 3 middle toes on each foot are dead. In the last year pins and needles has spread above knees and also have them in my scalp.

I find I can reduce the intensity by doing gym resistance training and eating a low carb diet. It is also important to avoid stress as that makes it worse. I find not eating bread, pasta, rice or potatoes very effective. I have ideopathic peripheral neuropathy ie no known cause.

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Mine is progressing much quicker.my dr is now going with cidp. I think she is just hoping the treatment will work. I have had the polysensorymotor neuropsthy for almost 2 years... in november. It started november 2016 in my toes and i thought it was from a new pair of shoes i bought for a new job. By this time last summer i had gone through what i thought was the worst. I had started cymbalta last july 2017. It seamed to help to the point i could dress myself again. So i started back full time at work,i was a massage therapist. I then started to again decline by november i knew i had to quit. November 30th 2017 was my last day. By february 2018 i could do nothing myself. I started to take tumeric and slowely but surely i got better. I never could do much more then hobble along without a walker but even my strength in my hands aproved a little bit. By june they went back down. At my age i should have a grip strength of like 65. Mine was 10 i think last time it was tested. It was a 6 in march and a 18 in april ... i think im weaker than 10 now. It is strange cause i feel better when it is dark. Anyway. Try tumeric cucumin. It works enough to help me...

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I'm sorry to hear about your cidp. I have axonal/idiopathic with weakness. I had to respond, though, because I also feel better in the night hours...not sure why....Cheers!

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I feel i could have wrote this myself..fast progressing neuropathy. From my feet to my head in less than a yr. No explanations. "Idiopathic neuropathy" . I however was in a toxic mold infested house for 2yrs and im quite confident that is what happened to me and started my illness. I feel so alone because its the unseen sickness. The unseen pain and discomfort daily :( my neurologist have me gabapentin for nerve pain and said basically take as much as needed up to 2400mg (really?) Coming from someone who barely takes Motrin for pain. Gab makes me loopy and off balance even more so then when I dont take it but does help take an edge off the nerves. Not completely but takes the edge off slightly. Its not worth the pill to me due to side effects. Im trying to deal daily and tryong to get a job because I've been out of work for a yr. Im going to try and sign up for disability because severe neuropathy is a cause for such. And not sure if ill be able to waitress qith numb arms hands fingers feet and legs..seems near impossible. Id likento know if I get any help or updates and ill let u know if I do as well. Good luck! We definitely need it!

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I have peripheral neuropathy of unknown cause which is also spreading. I dont have it in my face but have it in my skull. I saw an interesting video from the usa with a docor saying a lot of people although not diabetic are pre diabetic. I no longer eat bread, rice, potatoes and pasta. The physio also advised me to do gym 3 times a week to improve my muscle strength. Both have helped. Although it is spreading the intensity is reduced. I also find it is worse if I am stressed. Hope these ideas help.

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My situation doesn't sound as bad as yours. I have neuropathy and arthritis in both feet and it hurts to walk a lot of the time. I walk with a cane and I prop my feet a lot of the time and lie down a lot. Sometimes it has progressed rapidly, sometimes not. And it hasn't spread much into my legs.

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I've now developed arthritis in both ankles too. Strange, and I dont know if its related. The PN is manageable but the arthritis is now the most pain! Have had steroid injections into the joints which help - but only affects the symptoms, not the cause. I think ankle fusion ops will be next.....

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Hi TallKeith, l have had non diabetic neuropathy about eight years. It's started in my toes, then my feet, and now one leg has progressed to the ankle. My neuropathy makes my affected areas in some places feel numb and in others like being pricked by pins and needles. Unfortunately, nothing has helped me to reverse these feelings, be it natural such as vitamins and minerals or doctor prescribed medications. I am thankful that I do not have continuous pains in my affected areas, because that seems to be worse than what's going on with me. I hope that you find something that will give you relief.

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I have had neuropathy for 6yrs.Had every test available.No cure yet,only comforting drugs of which I have tried many.I have now been taking Pregabalin for 12 months.Got the most relief from this with no side effects .Good luck for your future.

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I feel your frustration. I have started taking Tumeric in capsule form, tea bags & recently picked some up in the spice rack at grocery store. I think l am feeling a little better but not sure. If you are taking other medicines please check with you doctor before trying it.

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I have almost got rid of my peripheral neuropathy. I was just in the pre diabetic range but only just. I saw a video from USA which said although you were supposed to be diabetic to get peripheral neuropathy lots of undiagnosed people were pre diabetic. I went on a low carb not keto diet see Michael Moseley Blood Sugar diet. I have lost about 2 stone and am no longer pre diabetic. I also do High intensity interval training which reduced the pain before the diet and weight loss solved the problem. If I drink wine or eat too many carbs the tingling starts. I am no longer in pain apart from my toes feeling dead but I am told they are not dead as I feel touch. If this applies to you hope it helps.

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