Hi all, I recently had an MRI scan and it all came back clear. The problem I have is I have had itching 24/7 for 3 months now from head to toe. My skin also very sensitive now so my clothes make me itch or the lightest brush against something. I had to decline a new job in these desperate times as I don’t sleep much and I wouldn’t say I’m intensely scratching, but I need to touch the area that’s itching to remove it. Feels like bigs crawling and is more intensive in my ears and up my nose!
It’s really getting me down and I feel I now have depression as I feel like I’m stuck with this for life. I also have episodes where my brain won’t compute what I see or hear properly and then I get panicky with the confusion this causes it’s very frightening. I read a lot that MS itching is not 24/7 so can anyone confirm this is the case? Many thanks
Andy
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Walt46
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Itching and MS. Horrible. I itch. Hits in spasms. Arms, hand, eyes, nose, ears, cheeks, head. Legs stabbing and burning. Also very often tickling when clothes touch.
Going through a mighty spasm at the moment, started yesterday. Grrrrrr.
First time it hit me, was all over my body. Two solid weeks of itching, even scratched out the skin. It is hell to live with.
No. I do not take any of those pharma drugs for it, they are all anticholinergic, and the anticholinergics can lead to dementia ! So, no thanks.
See what works for you, discuss with your GP or neuro consultant - they will off the anticholinergic pharmaceuticals. So, would also suggest looking for a holistic doctor. If you can find one. None where I live. Take care, hope you can resolve.
Hi, thank you for the response. You mention your’s comes in spasms which of mine did I would think it was MS, but mine is 24/7 with no let up and 3 months solid now + MRI x2 of head has come back clear and they have discharged me of anything being neurological. Really surprised they have doscahrhed me and the confusion and itching continues.
Hi, I never and I mentioned this and I also mentioned that a T2 machine may miss MS. He said he had to disagree and the tests they did was sufficient. I also mentioned that I should have a spinal tap and he said wouldn’t be relevant so it was left at that.
I have also lost 30% hearing in one ear and my vision was so blurred for a month I felt like my brain was seriously malfunctioning. That side of things have eased but it’s still there just 50% less.
Go see an MS specialist - a good neuro with a decent track record.
Should be able to Dx MS without contrast dyes and without spinal a tap.
Sounds like you have the MS effects, sic : itching, see you mentioned gut probs, What about vision, any changes there ? Cognition ? Working memory ? Go through the list of MS effects, tick off all that apply and then go see another doctor. Got to have a decent track record, and preferably be part of an MS team. Any MS in yr family ?
Nothing in my family but we have nerve problems that just cause pain.
I struggle to look at certain graphics, movement and sound sometimes comes back blurred where my brain can’t compute it and I’m get confused. Long term memory is fantastic but my wife will write me a list of 3 items for the shop which I refuse to take as I say I’ll remember but I end up calling her as I can’t remember. I have snow vision like static which is awful in poor light or a one colour toned background.
I have muscle spasms, nerve pain throughout body and horrible internal tremors. My tinitus is raging in right ear where the noise is coming from my head rather that my ear which makes sense as tintitus is brain related rather than ear. The Neurologist said not brain related and he was head of his department! I have loose stools and thatvate oily and a fatty liver so that side of things are being investigated for now. Falling apart since Jan2020!
Find another neurologist. If this one can't/won't/has no interest in problem solving, he isn't worth your time. Travel out of your area if you must but advocate for yourself and get help.
Try a histamine free diet for a while or google about that. I had a reaction to pork once and itched for 3 days...before that happened I thought people claiming they had histamine intolerances to food were crazy 😬
That said, I never gave my kid chicken egg whites until way after the time they are allowed to eat them!
These symptoms point to something being wrong, so I would find a new doctor ASAP and an MS specialist if at all possible. I don't know what other tests were performed, but I wonder if you had relevant tests, a complete set of tests, and if you had a thorough clinical exam.
It's important to be your own advocate and push for answers. Many of us here were dismissed by some doctors for years until we found one who was thorough.
As to medicines, if it were me, I would be willing to take something that would help, especially since it probably would not be long term. This is obviously maddening and disturbing your life to a severe degree. Gabapentin and some other medications may be very helpful.
Please let us know about your journey to a proper diagnosis. I sure hope and pray you get some help for whatever this is.
I will do. have had lots of blood tests all which have come back fine which doctors don’t seem to untrested after that. I feel like someone would know if they have MS which I certainly think I have it if it wasn’t for itching 24/7.
Itching was my first symptom of MS. It always started in my scalp and then traveled anywhere. Once I touched the itchy spot it jumped to another nerve. I use to feel like a monkey. I saw an allergist and dermatologist. Eventually I tried Atarax (hydroxyzine). It was my miracle drug! Now it’s my go to drug when that symptom returns. Good luck to you! I feel your pain😢
I went to 4 neurologists before I found a good one that requested a T3 mri. He was soooo good. Head of an MS Clinic, but had his own issues, and simply retired, walked out, one day, tried 2 more neurologists, so irritated at their ignorance I don’t even go to one anymore (course I am 73 and have lived with my MS partner for 56 years so I know now what they know). So find another one
I didn't know you could get this, but I do suffer itching quite a lot, probably not to the extent you suffer, though. It sounds terrible, hope you get relief some time soon! 😊
Try itching forever. Okay, it's only been 30+ some years. You learn to live with it. BUT, scratching is Ecstasy!!! Especially when your spouse does it for you!
Hi, are you saying that you have it head to toe like I do? Is that a symptom of your MS? I’m not joking, me wife scat he’s me to sleep every night or I wouldn’t sleep!
I have bad itching on my scalp. Id love to stop it without another pill!! My daughter c/o itchy scalp too. She does not have MS. We both have used the same shampoo and are currently switching shampoos to try that
Talk to your doctor. I had this issue about 6 years ago, after 9 months of trying to determine what was going on, I went into anaphylactic shock. For 9 months we could not tie it to my MS; tried antihistamine regiments,. anti biotics, steriods, creams, lotions, oils, you name it we tried it. Doctors started to chalk it up to nerves and stress; live was very complicated at that time. Then came the anaphylaxis. My Neuro MS doctor and my GP compared notes and files very thoroughly. Turns out I was having an allergic reaction to my MS med Copaxone. Had been on this shot for over 6 years. This has now happen to me 2 more times, all the result of meds I was been using for years. Your body changes, pharamaceutical companies change one minor ingredients, a million question go on and on. But not something to play with when your body is telling you something is wrong. Be sure to discuss all medication, supplements, even vitamins. All are man made, altered or handled.
Thank you. I wish I could pin point it to medication but I don’t and haven’t taken any medication , not even a paracetamol since Xmas so I know it’s not related to that sadly. not sure what is wrong with me as I don’t think I have come across anyone on who has had the itch constantly head to toe for 3 months solid. I also have raging tinitus in the right side of my head. I am frightened and I will never get answers to this. I’m glad you are better though and you did get answers.
Hang in there, you will get answers. I feel bad it is taking so long, but they will figure this out. Making a baking soda and water paste helped me a lot. Just water and baking soda, you can rub it everywhere. Leave on for 5-10 minutes, then rinse off. I would cover myself every morning, then shower; then again in the late afternoon/evening. Did give some relief, messy, but relief.
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Getting back motivation!?
Hey 👋 trouble with diagnosis 
This back of mine is misbehaving 
