[ArmyMahmaa]

Hi there.

I have quite a question for anyone who has MS.
I have had MS for 8 years. And for all of that time, when I have a flare, I get this odor in my scalp. I don't know why this happens. I have not heard of anyone else having experienced this with their flares.
I had the only doc I ever told, tell me it is a chemical reaction from the demylination. That may be. But I just haven't heard of anyone else with this same complaint.

Can anyone tell me if you have had the same or similar symptoms?

Thank you so much. Hope to talk with you soon,

Sheila

[Snoopy]

Hello and Welcome to Neurotalk Sheila.

I have never heard of that (of course that doesn't mean anything ) but a couple of things come to mind - some of us with MS can smell things that other people do not (phantom smells). Does anyone else notice the odor other than yourself?

My scalp (years ago) smelled due to a high fever and it took a very long time for that not to happen anymore...others could also smell the odor under certain conditions, usually when my hair was wet.

I don't know if I helped but someone else might have an answer for you.

[ArmyMahmaa]

Hi, and thanks for the quick reply.
My husband usually is the first to notice the smell. It is an outward odor.
When the relapse is done, the smell goes away. Funny in a weird kind of way.
It's odd also, that when I have a flare and my scalp developes the odor, my head always seems warm through out the process. ???
I have tried to figure it out. I just don't know. I have googled every grouping of words to find out if this happens to other people with MS and if it is indeed a chemical reaction. I have even called Biogen and the MS Society and it appears I am the only one to have this experience.
Just for the record, my MRI's show activity when there is an odor. So I am confident that there is a relationship between the smell and a relapse.
I will keep on searching and asking. I really can't believe I could be the only one with this issue.
Thanx Snoopy,
Sheila

Wow, dx since 86 and no meds. That is wonderful. Still doing well 20 some years later?

[Snoopy]

Sheila,

Anything is possible with this disease. Have you noticed if you run a fever with a relapse - might be a combination of meds and fever?

I'm still doing fine, still mobile and just use a cane occasionally....thanks for asking.

[Curious]

hi sheila to NeuroTalk.

[SallyC]

Welcome Sheila, nice to meet you.

I'm sorry about your problem. I do know that the smell comes from a certain cell in your scalp skin and it is usually caused by increased oil. All this can come on because of stress.

I never had it on my scalp but on me feet for about 6 months and then it went away. Don't know why it came or went. But I do know that stress can cause weird happenings.

Ask you Doc for something to help with your stress/anxiety problem and maybe your hair will smell like roses again.

Again, Welcome. Hope to see you around.