What's up with my hair???

[gypsy]

I keep finding conflicting answers for this question.... Does MS make your hair fall out? When I first started having major symptoms, my hair also started falling out. In clumps. It continues to do so, but not as much. Now get this, in the areas where it has begun growing back, it is now curly. I mean I have ringlets sprouting all over my head. I've always had straight hair, but now it's mostly curly. People have asked me if I got a perm. I seriously do not know if this has anything to do with ms at all. It's a little freaky.

[poohb3ar]

gypsy, bless your heart. i know i'd hate for my hair to be coming out. are you on dmd? do a search on hair loss, i remember seeing others who have the same problem.
on the up side- you've got ringlets others would pay for!!
praying that all goes well with you.
take care and God bless ya!

[heliotrope]

What medications are you on? Those symptoms are typical of cancer patients... and we have a few of the same drugs.

[Portia]

My hair has been falling out in the past couple of years too. I was diagnosed about a year ago. It has never come out in clumps, but it comes out like it did when I was breastfeeding; it really thinned out then. And like you, I am now dealing with increasingly curlier hair. I now straighten it. I personally think mine is caused by stress and maybe a change in hormones. Luckily I've always had enough hair for two or three people. My hair used to be so thick that I shaved the bottom half of the back of my head from ear to ear (to prevent heat rash) and people could not tell because the rest of my long hair was thick enough to cover it completely. It's not so thick anymore. I am on an experimental drug, not regular dmds.

[kellijo]

Also, one more thing to consider. Mine falls out due to underactive thyroid. Has your thyroid levels been checked?

There are so many things that could cause hair loss sometimes it's hard to pinpoint. Between meds and such.

I have also, had straight hair and when my hair started growing back in(after meds for hypothyroidism) underneath in the back I too have ringlets. Funny huh?

Kelli

[gypsy]

I've only taken Prednisone. I've always kept my hair short, but when it started falling out, I started letting it grow and the curls just popped out. I actually like it, but it's strange.

[gentlewinds30]

I am on copaxone for 1 years or so now. Dx in June 2009. My hair has been falling out the entire time. Not clumps, but enough on a daily basis that I am not happy to see it out of my head. Not sure if it is the MS or the Copaxone!

[Krysalus]

I was blaming rebif

I have been in a couple of posts about this. I was crying because I was losing so much hair. It's long. It's blond. I wanna keep it! I was blaming my meds. I am on rebif. The doc swore it wasn't the meds. I was tested for so many things that could cause it. All came back negetive. The doc even tested my testosterone level to my surprise. Girls have testosterone? my oh my. we do! just a whole lot less than guys! lol

My regular MD decided it was stress related as well as being in my 40s. Stress can cause so many other things to worsen. MS doesn't cause hair loss that I know of so I began a campaign to reduce my stress. I started taking vitamins. I started throwing out things that annoyed me... like the cranky coffe pot and replaced them with things that work! Sounds silly but little stressors are the easiest to eliminate. Example: If you have a pile of papers that annoy you... throw em out one at a time and the pile is gone. IT CAN BE DONE!

Now.... after 2 years of on and off again rebif... and lower, for me anyway, stress levels, my hair is not falling out so badly. It's also wavier than it used to be now that's it's not coming out in clumps and filling the brush and the shower drain.

Well...it's what worked for me. I thought it was my meds. It seems it wasn't or maybe I just needed to get used to the meds. I hope something works for you. Curly sounds nice! Mine was straight as a ruler. I'm reveling in the waves.

[needinfo4]

steroids

Any time I've used steroids my hair has fallen out, not clumps but a heck of a lot more than normal, hope this helps & good luck!

[fina66]

massive hairloss

I too experienced hairloss. I had long black hair for years. in my 30's I was going from neck length to shoulder length off and on.My daughter and I looked like sisters some couldn't tell us apart. It was so easy when I had a 3am shift for work.
after I was diagnosed in my mid 40's just one year ago. I was on IV steroid infusion a few times.
then Prednesone. I am on Rebif 3x week 44mcg's. I had gotten my thyroid tested, I had a saliva test for testosterone levels. I called my neuro hysterically crying about the clumps of hair I had in my hands 3 or 4 times a day. from my hair being so dark you could begin to see my scalp more and more. comb overs weren't cutting it anymore.It was thinning so quickly. my shower drain was clogging daily due to the hair loss. I began to wear hats and scarves to cover up but I couldn't wear hats to work.
I was at wits end. I was going crazy looking for answers. My saliva test came back with elevated testosterone levels through the roof! I called Rebif and they had no documented cases of any patients complaining about hair loss. They said maybe its my age it could be a number of things. Thyroid test came back normal.
I am on several supplements a day. I went to the health food store and started using an all natural shampoo in hopes of strengthening my hair as it was in its growth stage.
I knew I had to change my hair somehow since it was looking like I had gone thru chemo. I couldn't stand myself anymore. I went to a hair coloring studio that came highly recommended. I walked in, met a beautiful woman who turned out to be the owner she took one look at me and hugged me. I just began to cry. she asked me to sit down and take my hat off. I did and she wasn't suprised at all. she said "ok theres only one way to go with this, cut it all off and wear it extremely short"she said "it was very trendy"and very "in" for woman my age, she was sporting the same exact cut and I loved it on her. She said we go very very light to match your skintone which will eliminate the scalp showing so much.
I just sat there I couldn't visualize such a short cut on me since I had long hair all my life. I said just do it because I don't know what else to do.
she snipped a piece off to test it and asked me to come back the following day.
she colored my hair and cut it all off. I never looked back. I did not regret for one moment what she did for me. She literally saved my life. she made me smile.
I came home scared to death of what my husband would say since he has only really known me with long black hair.
He looked at me and said "you look so beautiful" I knew he was being an incredible husband. I didn't question him. I just thanked him.
It'll be a year in March when I made this drastic change. I can't even think about going back. I still love it and feel great in it. Changing my hair color led to changing my wardrobe. I used to always be in black clothing. Now I have added some color and feel great in that as well. As soon as I see hair growing I immediately go to get it trimmed off. I don't care to see long stringy thinning hair. I feel like i have more hair now than ever before. The natural shampoo helps alot to make it healthy, my hair dresser sees regrowth and thicker hair.
was it Rebif? was it Thyroid? was it stress? was it being middle aged? I don't know nor has it been determined. all I know is MS is the root of all evil in my life now. I blame everything on MS. sore leg muscles, head spinning, over exhaustion it doesn't matter I still have numb feet. I have learned to live with alot of changes but losing all my hair was the most devastating. Just cut it off ladies you will feel so much better. you can make a short cut look amazing, classy and attractive..I get compliments from men and women everywhere I go. My husband can't believe how many people stop me.

[fuzzywuzzy2]

I have always had extremly curly hair. I lose quite a bit in the shower.

I can actually get quite a bit and I have to be careful not to clog my drains. I do take thyroid meds, have so since I was eighteen. My thyroid levels are normal as of right now

I stress plays a big role. Trying to eliminate stress is easier said then done.

My hair is long even long when I straighten it. I have been considerering cutting it all off, but my hair is so curly...I have been teased before as being (mrs. Beasly) the doll when its short..I just don't wear glasses! LOL

Get your thyroid checked, it could be the culprit! My thoughts and prayers are with you!

[TheBeans]

Mine has gone in cycles over the years, but when it happens it always freaks me out! And then, one day, I notice the amount is less and even moreso the following day, etc. until it's back to normal. I have MS and Hashimoto's so I tend to think that it's a combination of my Betaseron and my slowly dying thyroid! Might be wrong...but that's my story and I'm sticking with it until I know better!

[kryptonite]

My hair loss seems to come in cycles too but this time it is not slowing down at all. Dr says its stress. I don't think so.

[CrazyCatLady]

Me too

I have been losing my hair since early Nov, about a month after I started Betaseron. I was on Avonex before that. I posted a thread about it in the general area.

It is still falling out, not clumps but stands everywhere. I had to put one of those hair catchers in the shower drain because it kept clogging. UGH! My hair is medium brown and pin straight. When it is wet like right out of the shower I can totally see my scalp but when it drys it fluffs up a bit and looks OK to a person who does not know me. It is just getting soo thin I dont know what to do.

My Betanurse said this is not a "common" side effect but told me if I read the beta paperwork it does say Alopecia which is hair loss. The thing that scared me is that nobody can tell me when it will start to grow back!

I have had thyroid and a few other tests done and the docs dont know why it is falling out other then the meds, so they put me on Gilenya which is hopefully a better med for me anyway since my MS is so active. However after reading the Gilenya paperwork I see that it can cause Alopecia too! What gives? Am I just not going to have hair? I have been off Betaseron for almost 2 weeks now but the hair keeps coming out.

[rocky282]

To Cat Lady

I too have some pretty yucky hair loss problems, I have long brown curly hair and I can fill the brush and the drain whenever I wash my hair. I am also on Betaserone. I did notice that if I wash my hair every other day it has helped. I have also started brushing it with a wooden brush every night a whole bunch and my scalp feels better. Don't know that it is helping growth, but it's not falling out as much. Good luck