Alright, here's a weird one ... Anyone who has had this or has advice, please let me know...
Anytime I touch my head, just to adjust my hair, brush it, etc. it's hurts very badly. Have you ever left your hair up in a really tight hair do for way to long and when you take it out your whole scalp/head hurts? That's exactly what it feels like. It gets more and then less intense.
This had happened before and about two weeks following I started losing quite a bit of hair. I went to a specialist who gave me rogain and so topicals but nothing that helped much.
I beleive, as do all my doctors, that this is caused by the betaseron. However, they have never heard of a case similar to this. To test (I know, bad idea) I skipped my shots for two weeks. Immediate improvement. No more painful scalp, no more hair loss. I went back on it because I know the medicine is more important than the hair (just wanted to test before making any decisions), and within a week the scalp pain is back and i'm sure it'll only be a few days before the hair starts falling out.
I was already considering switching to copaxone in the relative future, and this is helping to sway my decision. But I know the betaseron is supposed to be stronger, and my neuro doesnt think the copaxone will be strong enough for me. Hair lose and scalp pain isn't a reason to switch, I know.. but it's pretty darn persuasive!
It's interesting that you posted about this problem, or at least the scalp pain feeling like you had you hair in a pony tail for a week and then taking it out....this is exactly what I have periodically, and also have the same tenderness and sensitivity in other areas of my body from time to time that feels almost exactly the same. It will last for 3-4 days and then it is gone, but when it comes on I can barely stand to comb my hair, wash my hair, or anything else. I do not, however, loose my hair when it gets like that, or at least not that I have noticed and I think I would have noticed it. One big difference also is that I do not have MS and I am not on Beta...whatever it is you mentioned. I have SLE. See what I mean....another quirky symptom that we both get.
Now maybe I can ask everyone here one question.....I have this problem with my right thigh. It gets numb so often and most of the time I am not aware that it is numb almost until It is SO numb that it gets painful from deep within. I don't know how else to describe it. Does anyone else have anything like this? I am having a nerve conduction study done tomorrow and I am curious to see what it shows. I don't know anything about this test so i'm not even sure what it is supposed to show.
I posted about this months ago! I get sore spots on my head (no hair loss), and numb patches that come and go. There's alot of nerves in the scalp, and I'm guessing if something is going on with our nervous system then it would make sense we could get sensations in our heads. I just worry sometimes if it's that or something going on in my brain. Maybe I'll search the web and see if I can find anything on this. hmmmz
I had that pain too, before I started Copaxone. My hair has been falling out for months. Recently, I noticed it was breaking off a inch out of my head (I had almost waist length hair) so, I shaved it off! Much better Shock to all that know me but now I can start over and hopefully it'll grow back healthy.
Hi I am not diagnosed with MS but are having all the tests for it. My MRI has shown demylination and I am awaiting spinal tap tests. I have however had fibromyalgia diagnosed 13 years ago and it is very severe. I have had this painful hair problem for all of the 13 years, it comes and goes. I am not always aware of it unless I run my fingers through my hair and you are right is does feel as though you have had it tied in a pony and then released. It is so bad you cannot run a comb through it. Usually during an attack like this my skin is also extra sensitive and I cannot bear to even wash soap and water over my skin when in the bath as it feels raw to the touch. I always think to myself that my nerve endings are being attacked and are very sensitive and it will pass. I am lucky though that I have not lost hair with this. That must be very worrying for you. I have left a question on the board about a numbness I have which only happens to my left side of my head and feels like I have goosepimples there, it comes and goes like the saying some one has walked over my grave but it is only in my left side of my head. I had wondered if this was a reaction to the spinal tap I have recently had. I am curious as to if you may have this also?
Best of Luck
Thanks to everyone who posted back. It's nice to know i'm not alone, though i'm sorry that you guys have it.
I don't have any numbness at all (except in right arm, but that's normal for me due to relapse that did not heal). I can't imagine how what your talking about feels, I'd think very painful. Have you talked to your neuro about this? I'd be curious as to what they say. I don't think a spinal tap would cause that unless they hit a nerve, and from what i've read, you would have known during the tap if they had. Good luck with this problem.
My hair isn't breaking. I've checked many of them and it's definately falling out by the root, as the folical is still attached. It doesn't come out in clumps, spread out all over my head.
To those who have the scalp pain, have any of you talked to your dr.s about this? What did they say? Mine says "probably the Betaseron, but if so your the first case i've had", which means almost nothing. "IT's probably, but not likely", HUH?
I have that scalp pain too. I get it on and off (it lasts for a few days to a week) but my scalp is sensitive all the time. Vigorous scrubbing is painful. I won't let a hairdresser shampoo my hair anymore.
Oh, and I'm not on medication. So it can't be all down to the betaseron.