hi everyone!as some of you may know my symptoms started in march with sensory issues of feeling cold water droplets on various parts of my body,but 90% on lower legs.twitching started end of may.the last few weeks i dont twitch that much just a few flutters here and there mostly on calfs...i have tingling and buzzing too along with percieved weakness in left leg..the thing is i get the water sensations ALL the time! im wondering is this bfs or could it be some sort of neuropathy?? Anyone experience the water sensations?? any input much appreciated..Thanks in advance.
Sensory Issues, Twitching, Tingling and Weakness
- Thread starter grapepie
- Start date
Hi Bubbles, Excuse my english... Usually I go on the french board but when I saw your topic I thought that you are the only one on this site who has the same symptom as me. It was the symptom I had before BFS. At this moment I was very afraid that I should have MS. Now I have this only some times, rarely. But at first, it was almost on the bottom af my legs, but anywhere too. Like my twitches ! My first symptoms started 16 months ago. I had 4 EMG and they are all clean ! I hate BFS !
Bubbles, Marylin,I am reading this board for two years and I had seen about a dozen of fellows mentionig cold water or wet skin sensation as part of their sensory picture (this also includes things like bugs crawling, burning, pressing, hot patches etc.). Practically it could be becasue of the fact that BFS is thought partly to be of central origin (our central brain seem to make errors in signal processing therefore sensory system arrears to send too much signals and they are processed as pain, hot or cols sensation, touch sensations etc.)
hi marilyn!thankyou so much for your reply,it makes me feel so much better that im not the only one with these weird sensations!like you i feared ms at first and had a mri which was normal,thank god! then the twitches started and more worry 
i have had 2 neuro's who say bfs and dont see a need for an emg i was ok with that but now im thinking maybe i should have one for reassurance...sometimes the water sensations feel so real i have to check if there is actual water there!lol somedays i wouldnt have tham at all and other days[like today] its every hour or so!its so bloody annoying!anyway thanks again marilyn x
i have had 2 neuro's who say bfs and dont see a need for an emg i was ok with that but now im thinking maybe i should have one for reassurance...sometimes the water sensations feel so real i have to check if there is actual water there!lol somedays i wouldnt have tham at all and other days[like today] its every hour or so!its so bloody annoying!anyway thanks again marilyn xALS normally affects only motor neurons, and what you experience is a sensory issue coming from absolutely different physical neuron system. Becasue usually no so called small neurons damage is revealed (some of our fellows suspecting so called small neuropaty - wasting of those sensory neurons - insisted on skin biopsy to check sensory neurons condition), doctors think we have shortcuts in the brain (caused by stress) which result in sensory zones hyperexcitation and expanding, so we can interpret false signals as sensory ones. Anyway it is so common among our fellows...
Cold water sensations were one of my first symptoms when BFS came on.Hot and cold hands for no reason.I couldn't even hold a refrigerated bottled water without my fingers feeling like they were holding actual ice cubes. In the shower, my feet would burn like crazy even though the water was only lukewarm.And walking around dry, I would feel sprinkles of cool water on my legs. After my symptoms died down, I would have several funny events where I would feel sprinkled water on me, and ignore it, only to find that it actually was water!Those were relieving experiences because I knew I was actually feeling something that was there, and my symptoms had gone away.My Neurologist told me up front that sensory issues rules out ALS.
OptimisticGuy
Well-known member
my hands and feet get really cold ... I started getting a warm feeling on my left leg around the knee and above and below it..4 EMG`s ??? is one not enough ?? Geez I had one but if 1 is OK why another? never mind 4 ?Do you need more than one ?? :-s
cold limbs (not feeling cold but really colder that the rest) usually are related to spasm of small vasculature. this is common reaction on adrenaline by the way (more blood to heart and brain, hand and legs anyway will survive) or in general may be related to autonomous disfunction many of us demonstrate. Sedentary life, extra weight, diabetes, smoking increase that process as usually those factors promote spasms of small periphery vessels.Sensory issues are distinguished from overall coldness usually becasue there is no physical lowering of temperature on the site affected, and becasue it is usually limited to a certain area, often of weird form (string, patch etc.)wearing loose wear covering distal libs (arms and feet), like mittens or that socks without finger part...do not know a word, in russian we call them гетры (spats) - usually helps. Just no tight bands - and you may feel better.
TwitchyBoomer
Active member
This past summer, out of the blue, I was inside somewhere with air conditioning and I started getting this prickly, burning sensation in my hands that I never had before. It was the feeling of running ice cold hands under hot water. It stayed with me for a week or so and then disappeared. Weird...
NordicPrincess
Well-known member
I have had what you descibe for two years, constantly, and yesterday I og the results from the skin biopsy I INSISTED on taking, even if NO DOCTORS believed me..it should Clear SMALL FIBER NEUROPATHY. Also termotest with pathological result. I have it all over my body along with a lot of other sensory symptoms, like severe burning and tingling, bugs feeling etc..