Posted 14 October 2007 - 01:50 PM
When I go to my doctor, he usually checks my hair but I don't know if hair loss is one of the symtoms of SS.
I have seen a lot of hair on the bath floor after I take a shower, but yesterday my hair was falling by chuncks.
Anyone going thru the same thing. Also, what is the name of this condition?
Posted 14 October 2007 - 05:24 PM
I have hair loss too. Mine is generalized thinning, not patches. It was one of my very first symptoms of autoimmune "stuff" almost 9 years ago.
I went to a dermatologist thinking I had developed an allergy to my shampoo or something. He asked me if I was nursing my 6 month old and I said yes. He said probably just a vitamin K deficiency and sent me on my way.
Since then I have had "episodes" or "flares" of hairloss where I will shed like crazy and then it slows down and normalizes. I'll even get regrowth.
BUT it is kinda scary I know. At first I didn't know if it was ever going to stop or if it would grow back. I would get literally a handfull out of my brush every day and I don't have much hair to begin with!
My bangs are really thin and you can see my scalp peeking through. It's not too bad, I'm sure only I notice my scalp staring at me. No one has called me baldy yet anyway!
Hairloss IS listed as a symptom of sclero. but I have not run across many others who have complained about it besides me.
Alopecia ("Allow pee shee uh") is a form of hairloss that is autoimmune. A friend of mine with MS also has Alopecia Areata, ("Air ee ah tah") total body hairloss.
More info online at the National Alopecia Areata Foundation.
As if the seriousness of this illness isn't enough, it isn't fair that we also have to deal with the changes to our physical appearance too.
I deal best with a dose of humor, otherwise I'd go nuts. Some people would say I've already gone there!
Hang in there,
Posted 14 October 2007 - 06:43 PM
Posted 14 October 2007 - 09:35 PM
I hope that we can still keep our hair, because being bald would really get my selfesteem LOW.
Posted 15 October 2007 - 01:06 AM
Short , not bald .
Doesn't blow into my face,
using less shampoo, (saving money for my drugs) LOL
And if need be , they do have some really cute hats out there now .
And wigs , LOL a different syle and color everyday.
Posted 15 October 2007 - 01:13 AM
are you having success with your efforts to quit smoking. Hope so !!!!
Posted 15 October 2007 - 08:21 AM
I experience this a while before I was diagnosed (late '90s). I was terrified my hair would never grow back. I had thick, hair well below my waist and I lost 2/3 of it. So, like Katherine, I got my hiar cut to chin-length, which I think may have been a good thing, as it grew back in. Of course, the aging process has thinned mine out in the meantime.
Something else I'd like to share, since we're on the hair subject.
Hubby and I moved in to caregive my mother, who is legally blind, on O2 24/7 and has other health issues, including onset Alzheimers. Anyway, she had taken a shower (something that's quite an accomplishment, as she, for whatever reason, feels her "once-a-month showers"... if that often... are enough for her... sorry, that's another matter entirely). Back to the story... she had taken a shower and her hair was a very shiny, pretty silver, for which I said, "Grandma, your hair sure is a pretty color"! She replied, "Thank you... yours isn't at all shiny like it used to be"! Bam! "Thanks, I guess"!, I answered.
My comment... she isn't wrong, though. It doesn't seem to matter what I use to wash my hair, the shine is gone... I WILL say, however, that I do have highlights... greys, mixed with three-toned browns
Really though.. should I be using vinegar to shine it up... or what?
Thanks for any input you may have!
Posted 15 October 2007 - 09:11 AM
My hair is thinning too but it's from the cyclophosphamide. I use an expensive brand name shampoo that helps with thinning hair. Vitamins help too. I don't mind the thinning because my hair is super super thick.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 15 October 2007 - 09:30 AM
I also had hair loss a few years back. It was right at the start of me getting ill. I still have some but not too much. I also had thick hair but now its thinner but hey nothing I can do.
Susie..... for the shine, they now sell hair shine spray in most stores. I have two bottles of it because I too lost my shine. I just spray it on after my hair is dry was washing and it looks great. I know Vee is a Hair stylest so hopefully she will jump in this thread and give us some ideas for all this.
If Life hands you lemons, make lemonade.
Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.
Posted 15 October 2007 - 11:20 AM
I've been noticing the same thing. I turned 40 this year and thought it was more age related. I never made the connection. I use to have very thick hair as a child and now it's very thin compared to how it use to be. Everytime I was my hair to get a wad that I have to thow away than then there's even more when I brush it. There is hair all over my floor. I like many of you, just recently cut my hair shoulder length. I like it, just wish it was thicker, fuller and had shine.
Posted 15 October 2007 - 11:50 AM
Another miserable symptom.
Posted 15 October 2007 - 01:12 PM
I had never have thick hair, I know I am very vain when it comes to this kind of things, but I really don't want to loose my hair. I'm going to go to the doctor and find out if there is a product that will help me with this.
As to my smoking, just couldn't quit for now. The pills really messes me up. I'm going to start again next week and see what happens. I will keep you posted.
Have a great day,
Posted 16 October 2007 - 05:35 AM
I am experiencing the same thing but am attributing it to the cyclophosphamide I'm on. I haven't had it going in clumps but just lots of hair gone each day and it's getting so very thing so I know it's only a matter of time. Let me know what you find out please.
Posted 16 October 2007 - 10:20 AM
Posted 16 October 2007 - 12:22 PM
You can buy shampoo to remove build up or you can use vinegar, baking soda/water paste or even a beer. So many shampoos and conditioners are the culprit too. Mine's gotten thicker since I've gotten healthier but that's not saying much considering how thin it was to start with. Two years ago it was awful...broken, thin and dull. Now it's just very dry and dull .
I use all kinds of protein conditioners. If you want to know which one I LOVE, email me. I use the same shampoo (almost) as Peanut and hopefully it'll help too.
I think cutting it off is a great solution. I am thinking about chopping mine off.
Any ideas on a cute style? It needs to hide my tangelos.
Posted 17 October 2007 - 07:47 PM
Has anyone said anything to their doctors? What have they answered?
I'm really worried that I will lose all of my hair. I'm not ready, we have had a nice relationship together!
Take care of your hair