Foggy's "Invisible Illness" Support

Help please, I don't know what I'm dealing with!

I was told in November 2016 that I have Sensory Axonal Peripheral Neuropathy with no known reason. I am female aged 73.

I had to wait five months to see a neurologist, the results were MRI okay, Muscle tone okay, but as you can see the nerve test gave the answer. Although the neurologist said that my problem did not have anything to do with my brain or my spine.

Blood tests showed I was low on vitamins B12, D and foliate, I took the vitamins and now my blood tests show my blood is okay.

But now ... (ignoring the terrible nerve pain if possible) my feet and legs (up to my knees) are numb, my hands are fast becoming numb, I awake at night to find my fingers on one hand or another or both quite 'dead' until I move them and then the feeling returns to normal (well as normal as can be now). I have also seen a Rheumatologist who said they could find nothing that could point to my problem.

My lovely husband suffers from a bad heart problem and has memory problems, so I don't like to bother him overly much.

I don't drink alcohol or smoke.

I want to know what I am dealing with here ... so ... does anyone know whether or not my hands will become paralysed please?

thank you for reading my problem x

13 Replies
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Hello, so sorry to hear of your problems.

I am 59 and have similar - nerve tests showed damage but all scans and blood tests were clear. I also get complete numbness in my hands at night sometimes, but I think this is more to do with sleeping on them, and the feeling does come back. My neurologist was very vague about how this progresses or not - it may get better, stay the same or get a bit worse - we're all different - but as far as I know, it doesn't result in paralysis (although maybe lack of sensation can feel like paralysis).

Forums like this are a great help as it shows us we're not the only people with this thing x

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Hi there thank you so much for your kind reply, just reading it made me feel better x I did notice that I did not lay on my hands, there was no pressure at all, one hand was on the bed at my side the other on the pillow. As you say, it must be something to do with the problem. I am so sorry you have this illness at such a young age, it must be very difficult to cope with. God Bless you hun xx

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Heatherthomas I am so sorry to hear of your problem. I myself have neuropathy but mine is in the lower extremities due to low b-12 and hiatal hernia - GERD. I get a b-12 shot once a month take folic acid 4x a day with 2 vitamin d’s 1,000 units and 400 units with calcium citrate. I have never heard of neuropathy becoming paralyzing. I would seek another opinion and make sure you keep all your notes and test + mri’s etc. because I am skeptical about mine

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Heatherthomas stay positive and keep yourself busy and don’t dwell on it. Was all your blood work good ? I have had my neuropathy since 2014 and stay active by walking best I can use a stationary bike and small 5 pound weights. I have had plent of tests. But down the road I may seek some physiatry rehabilition recommened by my psychologist.

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Hey there thank you for your reply, my blood tests showed low B12, Vitamin D and folic acid .. all are normal now.I think you are right about not dwelling on it, and I don't but I do have what I call 'flare ups' and then I do nothing else but think about it, they can last for one night or seven or eight days, I get a buzzing throughout my body, and my legs, hands and arms burn.

But for the rest of the time, I try to ignore it ... and yes I think I will buy a stationery bike x

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I am 64 and my neuropathy stems from a post surgical issues and progressive scoliosis. I too wake to numb hands which wake after shifting position. I sleep on my side due to the back discomfort and it seems that pressure in a certain spot causes the numbness. Even my right leg, where the neuropathy is the worst, has the numbness cycle through different stages of sensation. Be patient and you will hopefully learn your body's new cycles too

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Thank you BigBill xx I truly appreciate your reply! Perhaps you are right I do have a lot to learn as to how my body is learning to cope with this illness.

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Hi there, am so sorry you are having these troubles. I am 69 & have Peripheral Neuropathy also. I have never heard of anyone being paralyzed with this condition, but if you want to understand more about it, it would probably be a good idea to write down all your questions & then make an appointment with your doctor & go through them. It's your body & something you live with & you need to know what's happening & what you can maybe expect to happen. I also get numb hands which return to normal when I flex them & I get a burning pain in my feet & legs which has travelled up from from my feet to my hips over the years. The pain is usually worse at night & also if I`ve been more active during the day. However, we truly are all different & our bodies will behave differently. If you find your pain is increasing with time, be sure to tell your doctor, as there are medicines which can help. I resisted taking pain medication as long as I could & I think that was perhaps a mistake, for me. I am now, reluctantly, on Gabapentin, Naproxen, Amatriptylene & soluble Paracetamol, which to me, sounds far too much, but that was gradually built up until I at last had relief. (I also have Arthritis). The pain now is usually much more bearable, although there can be episodes of increased intense pain. Please be reassured that how it affects one person does not mean how it will affect you. If you search this site you will find there are a huge number of people dealing with this problem &, if you are anything like me, you will be horrified at the level of desperation they are feeling. This is a condition that the medical profession really doesn't seem to understand. They don't know what causes it & they say they have no cure for it. I have also been told by my lovely doctor that they haven't found the answer to medication specifically for nerve pain ~ hence the cocktail of drugs that I`m taking (& it took a lot of time & juggling to find what worked for me). I hope so much that you have a good doctor with whom you have a good relationship. If necessary, as things progress, it may be beneficial to write your doctor a letter explaining in a no holds barred way exactly what you`re experiencing. That was extremely helpful to me for helping my doctor understand the level of pain I was experiencing. My apologies if this is rather long winded. You are most definitely not alone in experiencing this condition & I send you my warmest best wishes. Sincerely, Chris, xx

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Hi Chris .. I enjoyed reading your 'long letter' .. thank you for taking the time to reply is such detail I truly appreciate it.

The Neurologist did put me on Gabapentin, it altered the chemistry of my brain and made me so ill (after just one pill) that I was in bed for 24 hours, my doctor tried me on something else similar but that made me ill too.

So now I am trying to just manage with paracetamol .. but if like you I get so that paracetamol isn't enough .. then I don't know what I will do.

I have received some very good advice on here, and I feel loads better now, I just felt so alone ...

Thank you again Chris, you have given me much to think about x

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For me b-12 shot once a month and folic acid and two vitamin d’s and calcium citrate For me right now. But as far as your buzzing throughout your hands arms and legs ask your doctor is there anything else to do about the flare ups. It is good that your b-12 and folic acid is good cause that is very important. The worse thing to do is to dwell on your problem. So stay active keep busy and you can always seek another opinion. Just try and be creative and how to make your situation better. What ever your daily schedule is every day try your best on how to deal with your situation and do not despair. There is plenty of help out there. And see if you can get help with the buzzing and any pain. Acupuncture or ask your doctor for another course of action. To start it is good your b-12 is good/ folic acid. Greg

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Thanks Greg, I live in the UK and if you do too, then you will realize that although we are lucky enough to have free health care .. the duration of a doctors appointment is only 10 minutes .. so I write everything down when I see him.

I have told him two or three times about this buzzing in my body .. it's as if all the nerves inside my body are on overdrive, but he doesn't know what it is.

I have just received my blood test results from a Rhumatologist (it was thought that I may have had lupus?) but nothing abnormal showing.

I now think that there is nothing else to be done for whatever ails me, and I have to accept that it is what it is, and take some of the good advice offered from all these lovely caring people, and just get on with coping.

Thank you again x

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It's me again .... I don't know if I should make a new post, or if it is okay to add on to my original post ... well .. here goes ..

For the last few days my legs have been really, and I mean REALLY hurting me within the muscle down the side of my shin. It feels as if it is contracting all the time, in bed it seems to start to tun into cramp? But not quite.

But during the day it is a continual pain in both legs. I have ordered an exercise bike so I can do more to help my legs, and I have taken to jogging on the spot to music, but afterwards the pain in Burning right down my shins.

Does anyone have any advice about this please.

I am so embarrassed to ask for help again, and I don't even know if it's in the right place to be answered. xx

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The symptoms you describe sound like peripheral neuropathy possibly caused by vitamin or magnesium deficiency. You can suffer from a B12 deficiency but still be in the normal range. How was your low B12 treated last time?

Try taking 1000 micrograms (1mg) B12 sublinguals every day. I find Jarrows Methylcobalamin works the best. If you feel better after a week or you feel worse, unusually sleepy with funny sensations then it is probably B12. If there is no change then it probably isn't B12.

Also try a magnesium supplement of some kind, try to avoid magnesium oxide and have 700mg or more. Or you could try magnesium bath salts.

If neither B12 or magnesium do anything then look for other causes of peripheral neuropathy. For instance diabetes, other B vitamins, etc. Try a high strength B-complex vitamin supplement with the B12.

Keep supplementing with Vitamin D now that it is winter.

Don't forget to badger your doctor. Good luck.

P.S. Memory problems can also be caused by low b-vitamins. So if you do try them, see if they help your husband.

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