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Posted: Mon Jul 24, 2006 7:18 am
by sh8un
Hi all
OK...update on the hair loss that I am sure everyone is sick of by now. I just want to update you guys because I think that it would be important for ppl to not think that it's the drugs that are causing it if there are other reasons. that was the scary part for me. I thought that I might have to change the drug that I am on so early in my MS career that it scared me. Anyhow...like I said before, my tests about my thyroid came back normal like I knew they would. So I looked into the stress thing and my dr. and I agree that it could be d/t stress because all the time lines fit. I have a website in my earlier posts if you are interested about different types of hair loss. Now, I think that my hair loss has leveled off or maybe even a few strands less than before. I am afraid to straighten my hair because then I will really know how much I have lost. My Dr. also told me that I will continue to loose hair for a while but as long as it settles in about two months and as long as it does not get worse then he thinks we have the right diagnosis. He also said that it could be related to MS but that would be rare and that he is not ready to go down that road right now. He said hair loss like this usually indicates a systemic issue. So, I hope this helps people with hair loss. Oh yeah and he also said(I feel like a kid) that drug related hair loss is not that common with the exception of chemo of course
NN

Posted: Mon Aug 14, 2006 10:17 am
by sh8un
Ok...I am posting this as an update and also because I want to move my membership status to a " family elder." I just think that is so cool :lol: . So my hair is now falling at a normal rate. Like it was before. Thank you Ativan and Dr. Yee. I love you both. I am surprised that more ppl with MS don't have problems with hair loss. Maybe they are not as vain as I am to notice. :oops: Yeah...that could be it. Well...I think I am done with this one. One down and ____ to go.
NN

hair supply

Posted: Mon Aug 14, 2006 5:00 pm
by jimmylegs
great to hear! yay! although i still think blonde highlights would have been cool.

Posted: Sat Nov 04, 2006 10:30 pm
by MISunshine
Hi Sh8un,
During periods of exacerbation or high stress I too lose my hair. My sis-in-law introduced me to a shampoo used by cancer radiation patients. It is really gentle to the hair and it seemed to help me through. I cannot remember the name of it but I am sure that you can find some. Mine was purchased at a shop that sells wigs specializing in cancer patients. Hopefully you find this info useful. If I do find out the name I will let you know.

My doc says that we lose hair everyday and during certain times of the year we will tend to lose more anyway. But I find that during the time of exacerbation or high stress I am pulling out enough clumps to cry over. Whenever I shower I must clean the drain or the water won't even go down....so I know that is more than usual. But my hairdresser says that my hair looks okay and anything that I lose must be being replaced because it does not appear to her in any kind of bald spots....lol..
Take care,
MISunshine

Posted: Sun Nov 05, 2006 12:26 am
by sh8un
Hi
Thanx for the info. I hated that period because I wasn't really sure what it was from. It seems to have stopped now. I had changed my shampoo at that time but I did go back to Panteen( I think that's how you spell it) and it's stopped now. I do think that it was stress related. I was a mess when I was diagnosed and some days I still am. So if I lose more hair I know why. Welcome by the way...sorry you have found us but I think we are a fun bunch and that you will find comfort here.
NN

Posted: Sun Nov 05, 2006 7:21 am
by MISunshine
Sh8un,
Thanks for the welcome. I have been a reader of the site for awhile, but forget my name and password and have to change it, so finally I put that info in my little password book and have finally posted some replies. Still cannot access my business bank account tho have to change that sometime too! lol....the toils of memory loss...

An example of shampoo...my daughter,11,dressed for Halloween and we sprayed her hair black. She took a shower in my shower and used my Vibracolor shampoo (made by Brocato and found at hairdressers salons) and she came out with black hair...we discussed it and I told her Vibracolor keeps my color in my hair and obviously it does a good job at what it says, so go use Dads shampoo....her black was then completely out. She came out and observant as she is, said boy, if I didn't have black in my hair, what would this do to my hair? and I told her that is why I buy her the shampoo from the salon that is gentle to her almost 3 foot long tresses. She was thankful and got a great lesson about how shampoos work. My husbands hair is forever greasy and so the extra oil stripped from his head is great!!! I know that salon brands seem more expensive but when you love your hair as much as we (you, me and my daughter) do, you may want to look into these. They are concentrated so you do not use as much as the department store versions and they typically do not cause as much damage. If you are the girl in the picture than you do have beautiful hair and you also look young, looking into the ingredients in your shampoo should be something beneficial for you.

Pantenes Main Ingredients: Water, Ammonium Laureth Sulfate, Ammonium Lauryl Sulfate, Glycol Distearate, Dimethicone, Cetyl Alcohol, Sodium Chloride, Cocamide Mea, Fragrance.

Vibracolors Main Ingredients: Water, Disodium Laureth Sulfosuccinate, Cocamidpropyl Betaine, Decyl Glucoside, Sodium Laurel Sulfate, Cocamide MIPA, Mangifera Indica (Mango), Fruit Extract, Helianthus Annuus (Sunflower) Seed Extract, Glycol Sterate, Panthenol, Hydrolyzed Wheat Protein, Aloe Barbadensis Leaf Juice, Phenoxy-ethanol, Methylparaben, Propylparaben, Sodium Chloride, Citric Acid, Tetrasodium EDTA, Fragrance.

panthenol which mixed with the other ingredients of Vibracolor helps to prevent fade of color by neutralization of oxidative radicals generated by daily exposure to UVA/UVB rays which is what makes color fade.

I am not a scientist but sulfate is two of your top three ingredients in your shampoo. Sulfate is not in my shampoo till the fifth ingredient. Sulfosuccinate is sulfate free. As you know the ingredients are listed with the highest amounts first. So my suggestion is to stay away from sulfate shampoos (those with sulfate in the name) or since we cant seem to do this at least have them lower on the list. And go with the Sodium based ones rather than the ammonia based ones as they are less severe to hair and skin (remember your scalp is skin).

I am also sorry that we had to meet on an MS forum. Hopefully someday this will all be a bad nightmare that we can wake up from!!! Until then we must do whatever we can to make any side effects less. Sorry if I bored you on this shampoo lesson, but hopefully it will make people more aware of what they are putting on their heads.

Have a great day!
MISunshine

Posted: Sun Nov 05, 2006 9:58 am
by sh8un
Hi again
He he he...are you sure you are not a scientist???? A hairdresser??? Wow...I have to say that I have never looked at the ingredients in my shampoo. The only thing is that I am cheap as hell. I could never pay what they are asking for at the salon but if my hair gets bad enough, I just might spend a little more. I would hate to think that shampoo companies are getting something out of MS too. The Pharma companies are already getting enough of our money. Thanx for taking the time to explain all that you did. I do hope that one day we won't have to worry about this stupid disease. Also…good idea to have a password book. Not really great if you lose it but hopefully the chances of that would be pretty low if you keep it at home. I also forget my passwords often. Way too often. :cry:
Take care,
NN

Posted: Fri Nov 17, 2006 9:15 am
by REDHAIRANDTEMPER
dang ya know i was shedding hair way before this happened to me..so i am sure the way i am going i might be balded in the next two yrs.....

chris

Posted: Mon Dec 10, 2007 8:52 am
by jimmylegs
hi gang GUESS WHAT! i can't believe this never came up earlier in the alopecia investigations, but i just got into a conversation with terry over iron issues, and she said in passing that she had alopecia, so i looked up iron and alopecia together and yes, yes, yes. so, the question is, for those suffering from alopecia, do you know your serum ferritin levels? i so curious now!

Posted: Fri Dec 14, 2007 4:33 pm
by sh8un
Hi J,
I actually don't know my levels now but i do know that i have been low before. i am no longer losing hair now and i really do think that mine was stress related but if i remember, i will aks to have my levels checked just for you. :wink:

Posted: Fri Dec 14, 2007 6:56 pm
by jimmylegs
i think we need more of all kinds of nutrients when we're stressed, so it could have been iron or something else. i know i'm low in iron, and i recently learned that when you have an inflammatory condition, it makes your iron results artificially high. as in there's a bigger difference between serum ferritin and actual stores, so from the elevated serum ferritin result, it makes your stores appear better than they really are. interesting.