14 months of none stop symmetrical tingling
Posted , 9 users are following.
Hi all I posted when this first started in Dec 16 I basically woke up with tingling in both feet within hours it spread to my knees then into both hands ,it has stayed none stop tingling I have had loads of tests brain and cervical spine mri normal bloods normal nerve studies I've had 2 both normal last neuro I saw in Oct said likely idiopathic small fibre damage no known cause I have had a baby during the time I've had this tbh it was slightly milder through pregnancy and now 11 weeks post partum it's extremely severe with zapping going through my feet the tingling has never gone past my wrists or past my knees but stays perminent I'm at a loss of what to do I've tried supplements dit changes nothing has helped anyone else with this none stop 24 hours a day
2 likes, 29 replies
sherri11320 dawn68509
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I am wondering if they checked you for MS or Fibromyalgia MS can do the same thing as fibromyalgia I hope they figure things out for you and you can get some relief
dawn68509 sherri11320
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Hi Sherri it was made clear to me by 2 neuros that Ms wouldn't cause symmetrical tingling at the exact same time as a lesion would have to develop on both sides of my brain or spine at exactly the same time to cause it so is very unlikely my Dr suspected ive had a mild case of guillien barrel syndrome but neuro dismissed that too I'm being sent to the Walton clinic in Liverpool for a second opinion this is 100 miles from where I live so hoping they can advise me it's the acute onset they don't understand as that is gullien barre but I don't fit the pattern as still walking
acydgod dawn68509
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pippa58442 dawn68509
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I have had neuropathy for years and supplements don't help me either. Mine comes and goes in bouts. The hot Italian climate is the only thing that gets rid of it for a while.
hope4cure dawn68509
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dawn68509 hope4cure
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I tried that in the past for costocondritus a few years bk and made me really tired with a new baby I don't want to be out of it
kenny_BEAUCHAMP dawn68509
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Try a bottle of water frozen overnight in freezer then roll it on your feet for 5 minutes every 4 hours you might get some relief I have tried accupunture with no success also laser treatment same result now I'm at chiropractor whos the best for me all the best keep your head up I no it's very frustrating cheers
dawn68509 kenny_BEAUCHAMP
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Ill try that thank you how long have you had this and what are your symptoms I honestly don't know what my normal hands and legs feel like anymore I haven't felt them in 14 months it is a continuous rumbling tingling whatever u want to call it since it began I have baffled the Dr's with my acute onset but still have full feeling hot cold touch strength nobody can find what is wrong with me
kenny_BEAUCHAMP dawn68509
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Hi again my symptoms are hot tingling feet and sometimes finger ends more feet than anything else hope you recover quickly it's a horrible feeling cheers
shak2340 dawn68509
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Hi dawn
Mine and your symptoms are very similar..i also had a acute onset..i got out of bed had a shower and next thing I knew my body was all tingling it felt like a reaction to something,after a few days the tingling calmed down and I was very itchy which also lasted for a few days...i am now left with symptoms for a 1 month of pickling/tingly feeling in the hands and slightly in the feet and like yourself they seldom go up the wrist...im not sure how 1 minute your normal and next left with something chronic it's baffling me..somthing I do want to say is after thinking for the last few days I can remember on a lot of occasion whilst sleeping during the day sitting position on the sofa ..i would wake up both hands numb,it seem strange at the time but it also went away after shaking my hands,im wondering if that has a connection
dawn68509 shak2340
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Hi shak it's so strange isn't it I had a serious headache the day before I don't really have headaches often went to sleep next day woke up with tingling in both feet within hours up to not knees then into hands I never have a second without this feeling like your holding an electric toothbrush or the feeling in a car when feet down and it's rumbling through your legs ,what I've learned in 14 months is that it hasn't progressed anywhere else I was told that if you have this 18 months it's for life there's groups on Facebook small fibre neuropathy as that's what the likely hood of tingling is many on there have this but hardly anyone with acute onset it's like something has effected the body causing serious damage but what I don't know Lyme disease is mentioned a lot online I had a test was negative but I'm told there unreliable too much b6 too little b12 thyroid problems diabetes mine are all normal I get my bloods printed out I try keep my b12 at a high level to try repair this damage if it is small fibre, they tell me there's no Point to doing a punch biopsy which is the only way to tell u have it as it will change nothing as it's idiopathic so pain relief only I keep thinking is it circulation vascular I just don't know it's driven me mad if it gave me a break sometimes I could manage but this is crazy none stop when I lay down its worse I'm that desperate I've asked my Dr to send me to the Walton centre in Liverpool which deals with these things it's 110 miles from me that's how desperate I am to sort this out I feel for u if it doesn't go I pray it does for you its absolutely awful
shak2340 dawn68509
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dawn68509 shak2340
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I can get to sleep as I'm so used to the feeling it is just constant I don't know anything different than this now
callia80636 dawn68509
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Hey Dawn! How have you been doing? I'm in the exact same boat right now. It's been 10 months for me. The difference is I sometimes feel it in my back. 4 doctors, no answers.
dawn68509 callia80636
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Hi callia I'm still the same tingling none stop in all limbs waiting to see my 5th neuro end of April also got app in pipeline for Liverpool Walton centre to see if they can shed any light on this ,did yours come on overnight ,I woke up to this and has been none stop ever since how old are you ,this has now do read to my upper arms upper legs and groin area drives me crazy just tried pregabalin did absolutely nothing for me I'm taking every vitamin I can for this in the hopes to get a little relief ,I've had a brain mri clear bloods for all sorts including c125 c9 and c15 which are cancer tests diabetes full screening b12 ferratin antibodies panels celiac all clear I just don't understand something happened and blew away all the small nerve fibres I honestly think I'm like this for life now big hugs
callia80636 dawn68509
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No, mine didn't happen overnight. It spread over 10 months time. Started from both my feet toes, now till knees, hands and back. Sometimes it feels more like buzzing or vibrations and I'm 26 years old.
I keep thinking MS but my neurologist also said it's not. I'm going to seek help from new doctors this April too. I hope we'll find answers soon. It's frustrating.
Did you go somewhere or maybe inhaled something the day or week before it happened? One of my doctors asked me about that, maybe it's toxicity?
dawn68509 callia80636
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Hi the day before it happened I had major headache it's something I dont often have thats the only thing that happened I was also on amitriptyline and I've read about toxicity from that I just don't understand I have never felt my hands legs the same since 11th Dec 16 and I don't think I ever will it's a mystery at your young age I feel so sorry for you please update here if you find something out as to what it is thank you dawn
pippa58442 dawn68509
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dawn68509 pippa58442
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pippa58442 dawn68509
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dawn68509 callia80636
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hi did your tingling ever go away