Peripheral neoutopathy worried what can I do

I have a similar thing Deborah - lower back pain, one side (some MRI diagnosed centrally protruding discs which lean a little to that side, L5 and S1 but not enough for intervention). That side is weak, particularly the foot and the leg. Foot feels like it is all sort of bunched up and not functioning properly. With socks or slippers on it feels more so. Bare foot on the carpet so that my foot can interact with the padded floor feels a bit better -which leads me to believe it is the the nerves in the sole of my foot which have it worse. My ankle feels weak too -although I have been trying hard to improve it. The leg and ankle had always wanted to lean out to the outside. I mention all the weakness problems here but have excluded the foot and leg pain. Is any of this familiar to you please? Like you -no help -I think they think I've been exaggerating or something when I say that walking and standing for any length of time are difficult....despite my best efforts.

I sometimes get the sock like feeling on my left big toe.

Yes, I think the back is the culprit in some way. I have been doing daily exercises to strengthen my core. Even after all this time it is often not easy to engage the right glute in the bridge exercise but I am finding ways which work for me a bit better lately, However, for several weeks I have been thinking about the influence that my mid back, lower part, one side has to do with it all. Internally this is the site of my 5 years ago kidney removal. It has taken me a long time to recognise the tenderness, weakness and tightness in that area. Went for scar tissue release by a physio(deep massage lying on side) last week and noticed differences immediately. I'm not "jumping up and down" about it as I still have pain and weakness but it is evolving at a quicker rate than it did in the past. I'm going to target middle back now in my Pilates exercises with different types of "Thread the needle" exercises.

Sorry - I have lost the "thread" of this original message! I just hope, somehow, somewhere, that by opening out about what I am going through and trying it will help someone somewhere. That connection and help is what I want for myself and I have got no-where by suffering in silence with disabling symptoms.

I have a lower back injury from a fall so I wouldn't be at all surprised if some of my other aches and pains are connected to it. For me, I'm unsure how safe deep massage actually is because the only thing it released for me was a huge, highly unpleasant immune response that lasted nine months. This led to a chain reaction of other problems which are now permanent It did nothing for the pain it was supposed to treat and in fact it worsened my pain for a time. One thing I learned was that it is not a good idea to disturb the internal workings of the body and to let sleeping dogs lie. I found that so called natural treatments are not what they seem and although they are drug free, this does not mean they don't have side effects and can cause unnatural changes in the body.

In the end, I would have been better off taking conventional OTC painkillers. During my chiropractic treatment, I was advised to use ice as a painkiller to counteract the post treatment pain to make everything as natural as possible. However, my pain was so severe I had to take strong painkillers because I knew that ice would not touch the pain and in fact would it worse because anything cold triggers the pain.

My metabolism is very sensitive rather like the way my mum was and I also have the complication of being autistic which makes me hyper reactive to many things. However, I do understand that alternative treatments do seem to help some people.

Yes...and this just goes to show that everyone is different. It is a pity we aren't all a little more alike - then the medics could have a one size fits all approach for different ailments (which I am not sure they don't actually have already anyway...in the struggling NHS at least!!!). You sound as though you have come through some tough times Pippa.

I have felt I must act upon my symptoms with exercise and massage, or anything really which might work as I was getting no better without these things and feeling more and more worried and miserable. I get varying levels of weakness to half of my foot,,,and it is because of this variation that I feel compelled to try to strengthen my back, core, abdomen and, of course, my heart with exercise. The results also sometimes give me clues about where the origin of the dysfunction arises.

My neuralgia is still staying at bay at the moment with very little relapses considering how cold and wet it's getting.

Excellent, hopeful news for you Pippa!

I'll have to try not to carry heavy bags though, because I noticed some nerve conduction trouble after carrying a heavy computer case to the technicians to get my laptop checked and using another weighty brief case twice to writing groups coupled with shopping bags in between. Normally, my writing groups are once a month and well spaced out. This time, I have had three one after the other this week. With my arms and hands being in good shape of late, I had forgotten that neither of them can weight bear for any length of time. My dad is away so I have had to get my own shopping frequently and carry things that I am not used to. When my dad is here, he often carries huge reusable shopping bags packed with food on a regular basis with no trouble. He will be eighty next year and he is still fighting fit despite arthritis in his hips and fingers. I nickname him Mr Muscle!

What a nice Dad, Pippa.

Yes, Have wondered that Deborah. I have been going on 3 years though and it only affects feet and legs and back pain. I pass all the pushing away with your feet when GP opposes them with hands tests. I cycle and swim. When I asked the GP the question re MS she sort of adamantly said no. Having a proper diagnosis for something which doesn't go away though would feel better.

I don't have any fears of MS because my nerve conduction problems were confirmed as neuropathy by my doctor.

mines ok for weeks then comes back I've been fobbed off for 7 years being told its anxiety until today a doc sat with me for 20 mins saying its neuralgia not a stroke brain tumour or ms but I still have doubts

I wish mine was on and off. It varies a lot -sometimes pain, sometimes muscles not functioning....and within this other variables each day, but always there. Today is weak, non functioning muscles part of foot and part of ankle, mild pain in lumbar if I sit too long. Hate the weak non functioning muscles days most because they scare me. It I have pain, and as long as it can be tolerated I things are, at least, alive.

Best self diagnosis I can find is FND - functional neurological disorder. John Stone, consultant in Edinburgh has a website about it. I so much wish I could meet and talk to him.

Sounds like neuralgia; mine comes and goes like the way you describe . Neuralgia can be very unpleasant and produce the symptoms you have. Since doctor has diagnosed you, accept what you have been told. If it was any of the conditions you have mentioned, he would have told you, expressed more concern and ordered further testing, He has not done so; this should be good news for you.