31 months none stop tingling
Posted , 4 users are following.
hi all i basically woke up on 11th dec 2016 with tingling in both my feet within hours it had spread to my knees then into both hands it has stayed there none stop without a second break in 31 months ,also everything i touch increases the tingling in my right foot i feel the same sensation so if i wave my hand in the air i can feel it across my right foot if i squeeze my left upper leg it will be felt in the right foot with every single thing i do theres two signals all the time ,the tingling is horrific i have pain and bulging veins in my hands they look awful ,my calves hurt all the time like they will bust ,ive seen several neuros over 2 years had various bloods 4 mris of brain and spine ,4 nerve studies 2 emgs all show nothing ,1 neuro said hed never seen anyone like me in his 30 year career its the acuteness ,ive been told its likely small fibre neuropathy but havent had biopsy as because its idiopathic neuro says no point its pain relief only ,every day is a complete battle there are no gd days no gd 5 mins ,i cannot get away from this for a second ,sitting or laying down is horrendous ,i have full strength still can walk as before can feel hot and cold have brisk reflex which one neuro said is less consistent with nerve damage ,they all say different things as dont know what to do ,i dont know where to go with this its a living nightmare ,as i type i feel the dots in my right foot ,my nervous system has gone haywire,any advice appreciated or if anyone has heard of anyone similar on these boards its no life living like this everyday i just wish i cud find someone who understands a condition like this i can pay private but have no idea which neuro would be best with this i dont want to waste my time to be told they havent seen anyone like me before and im none the wiser
0 likes, 17 replies
derek76 dawn68509
Posted
In the previous year had you been prescribed any antibiotics some can have a long delay in causing symptoms
dawn68509 derek76
Posted
no nothing like that i had major headache the day before then woke up like this
derek76 dawn68509
Posted
Did neurologists not put any significance on that ?
laurel64844 dawn68509
Posted
Are you diabetic?
dawn68509 laurel64844
Posted
no blood sugars are perfect
0208mad dawn68509
Posted
hi i have suffered with this terrible condition for almost 5 years now i have seen 7 neurologists before been finally diagnosed with a non length dependent small fibre neuropathy. i have had 3 skin biopses all clear, full MRi that was clear so many blood tests all clear. Sensory Tests all clear.
Thankfully there doesnt seem to be any nerve damage, but i an in pain every day . Yes the only help is toxic drugs. Feel free to ask any questions.
BUT the good news is i am told it can go as siently as it came, so thats what i pray for. I dont know how i get through every day but what is the alternative?
Good Luck
dawn68509 0208mad
Posted
hiya do you have the tingling none stop ,im barely sleeping at all with the pain in my legs when laying down ,how did yours come on ive read loads on small fibre neuropathy and there is literature on the net saying acute onset cud be a guillien barre variant ,i was perfectly fine before this happened the only thing i do have is hashimotos disease so take thyroxine ive been told no chance this has caused this ,i have tried pregabalin amitriptyline cymbalta and gabapentin nothing has helped to calm it down it is horrendous right now ,do you have the problem with the nerve signals i cant find anyone like this that started about 6 months into this ,is there anything youve found has helped ,what neuros are best for this in the uk im trying to see a dr gosal at salford royal ive also seen 7 neuros all i get is be happy your tests are clear get on with your life nobody i see seems to know anything about small fibre although i have a formal diagnoses of length dependant small fibre which is idiopathic i cannot get any help from anywhere i really appreciate your advice ,i have met another young lady who is suffering really bad with this also ,hers is none length dependant shes had it 6 months so whatever help you can give me i can pass on thanks dawn
derek76 dawn68509
Posted
There are plenty of neurologist but the problem is finding one who specialises in your problem. I was told that Bristol has a hospital with more specialists rather than general ones.
Some people have found that acupuncture can help with tingling but again you need a specialist.
0208mad dawn68509
Posted
HI the neuro i found was Dr Robert Haddon. He works on the NHS at Kings College Hospital.He also practises privately at this hospital and at Kyms hosital in Maidstone. He specialises in the periphal nervous system.
im going to try and leave my tel no in the private messages section. My name is Msdeline
0208mad
Posted
Not sure how to post tel no in private section
derek76 0208mad
Posted
I was once going to see him when he used two locations in Kent. One private and the other NHS. He then stopped the private one and switched the NHS to mornings in another day. It was going to need three trains to get to Maidstone and I could not get there early enough.
dawn68509 0208mad
Posted
hi i haven't had a private message from you ,have you got tingling none stop ,what meds are you currently taking
0208mad dawn68509
Posted
Hi not sure have to post a private message.There is so much to say its easier to talk direct . I will try again later
0208mad
Posted
I do have the tingling but mine is more burning pain. Like sunburn, all over. The senitivity to clothing is really awful. Im on pregabalin and amitriptiline. It helps but only a bit
derek76 0208mad
Posted
Just click on message under your name.