I have been suffering for years with intense tingling and whooshing sensations in my legs, feet and lips after showers, usually worse the warmer or hotter it is, but happens even in slightly warm water. Happens after baths too. I don’t notice it during the shower. Will also happen if I go for a 20+ minute walk. I went to a neurologist and got a spine and brain MRI, it came back clear, I didn’t have contrast though but supposedly I am told this doesn’t matter as they would have added it if they saw anything suspect. I have had my scans checked by 3 different neurologist radiologists and they confirm no sign of MS and my motor functions seem fine. I have suffered with this for 8 years now if not longer. I will also sometimes get muscle spasms in my feet post shower, but I guess that might be because I bend my feet to shower under them. I am also 24 stone so very heavy. I suffer from back and neck problems too.
The neurologist can’t explain what is causing this, he just shrugged when the MRI came back clear. I have not had any nerve conduct tests. I have tried not drying with a towel just in case it is that, but it doesn’t make any difference whether I dry with towel or drip dry. It is NOT a itching, it is a horrible electrical style tingling and whooshing, it can get so bad that I will be almost crying in bed in discomfort after showers or exercise or mowing of the lawn. What I usually find is I wake up after sleeping without any tingling at all, until I move, if I move in bed then it comes back. It can last a week or so, or just a day, it differs.
What on earth could this be ? I have always thought it is MS but with a clear brain and full spine MRI I guess that probably means I am 90% unlikely to have it ? Not sure what to do or who to see. Everything I read online is either MS or itching, but this is definitely not an itch, I feel like my legs are attached to electrodes and it is within the legs not on skin.
Oddly the middle of my body is not effected, just the legs, feet, and lips/tongue (and sometimes scrotum). Also any idea why I would be tingle free when I wake up after a full nights sleep, until I move again ? Really makes no sense to me and no doctor seems to know. Very confused on what to do. Blood tests don’t show any issues and no diabetes.
It’s a horrible thing having to put up with sensations like yours, for so long, without a diagnosis. I hope that when you ask, “What on earth could this be?” that you are asking a rhetorical question.
It would be irresponsible for anyone, even a professional, to make a diagnosis on a forum, but feel free to vent your frustration here as many contributors have lived in limbo before their condition was given a name. Most people here will sympathise with you as many have had to wait for a diagnosis, or even worse, the wrong diagnosis, for years.
However, I don’t see any reason why you can’t be given drugs that will help you with your symptoms. Have you asked?
Thanks. Yes, I really don’t expect someone to give me a diagnosis on a forum, just so frustrated and looking for possibilities, as my last hope of a neurologist just basically shrugged at me when the MRI came back clear, so not sure who else to see. The doctors haven’t suggested any medication, not sure if there is anything out there for intense tingling as it is more a awful electrical sensation than pain, if there is though then I will try and ask.
Do you know how accurate a 1.5T MRI scan of the brain and spine is without contrast used (for MS diagnosis) ? I was told it is not needed as it should show something without and then would be used if something suspect was seen.
Your symptoms sound very familiar to mine. And in my unqualified, utterly unprofessional and totally irresponsible opinion, i would say you have MS. Congratulations! (Sorry my sarcasm is up to 11 today)
MRIs are wonderful (if claustrophobic) things and i would never pass up the opportunity to lie down in one, but whilst they are very useful diagnostic tools, they are not 100% definitive;
People can have symptoms but no lesions (like you) or can have an absolute plethora of lesions and yet comparably very few symptoms (like me). Apparently my MRI images blew up like fireworks… a dozen plus in my brain and a couple on the spine, one of which is the size of thumb print!!!
I would be worried, if it weren’t for the fact that i still seem able to keep on keeping on! And so i shall!
For you… i think you might be well advised to get a MRI as soon as things take a marked deterioration. Let us hope such never occurs, but that would be a prime time for you to catch lesions ‘in the act’!
In the meantime, i believe there are certain meds to help you with the things which ail you. People in here have guinea pigged themselves until they found the best remedies and we all love to share our findings.
Incidentally, do any of your ‘sensations’ peak when you look down (put your chin on your chest)?
Hi there, not sure if you are still struggling with this pain (hope not) but i thought i’d share my experience as i’m also having similar symptoms. I have been having them since July 21. I’m waiting to see a neurologist but in the meantime my doc has prescribed gabapentin which really helps. I’m also taking B12 vitamin. May be worth asking your doc to do full blood count to check for any abnormalities and vitamin deficiencies… i’m sure you will have done this since writing. Also like you I have neck pain ( mine related to bad posture), i went to see a chiropractor last week and explained about this nerve pain and as well as working on my posture he conducted some standard neurological checks. I have read that pinched nerves can also cause peripheral neuropathic pain… so worth getting your neck pain looked at in my opinion.
I hope you are reading this and much better than you were back in 2018. This is such a horrible pain and i can totally empathise with you.
