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Old 01-17-2010, 09:36 AM   #1
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486linda HB User
Wink ms

I have MS and take LDN does any one else?
I have no pain, but have trouble with my eyes, seems like double vision and trouble with thinning hair.Does anyone else have similar problems?
Linda

 
Old 01-17-2010, 05:05 PM   #2
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Positivethinkin HB User
Re: ms

Hello,

They do believe I have MS. I have had optic neuritis, it was three years ago. Most of the time my eyes feel pretty good but sometimes I will have pain and trouble focusing on an object. I do get hair thinning. What I notice is I get painful inflammation on my scalp as well, the inflammation comes and goes. It moves around to different areas on my scalp. I wish you the best.

Take care and enjoy every day of life,

Positivethinkin-Brenda

 
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Old 02-19-2010, 05:42 PM   #3
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Ginny8675309 HB User
Re: ms

Quote:
Originally Posted by Positivethinkin View Post
Hello,

They do believe I have MS. I have had optic neuritis, it was three years ago. Most of the time my eyes feel pretty good but sometimes I will have pain and trouble focusing on an object. I do get hair thinning. What I notice is I get painful inflammation on my scalp as well, the inflammation comes and goes. It moves around to different areas on my scalp. I wish you the best.

Take care and enjoy every day of life,

Positivethinkin-Brenda
omg!!!!!! YOU ARE THE FIRST PERSON TO EVER MENTION THE INFLAMMATION ON SCALP. i AM 38 JUST DIAGNOSED WITH MS AND I HAVE HAD THAT SYMPTOM FOR LIKE 3 YEARS. NO ONE EVER UNDERSTOOD. I FOUND THAT MASSAGING THE LITTLE TINY BUMPS AND MOVING THEM BACK AND FORTH SLOWLY AND DEEP WITH A LITTLE MASSAGE OIL OR OLIVE OIL WHICH IS GOOD FOR YOUR HAIR A NICE TREATMENT, (THAN YOU CAN WASH IT, RESTORES OIL TO INSIDE HAIR)AND HELPS THE PAIN GO AWAY AND RELAX YOU AND I THINK MAYBE THERE IS SO MUCH TENSION ALL OVER THE HEAD FROM NECK PAIN AND STIFFNESS THAT IT CAUSE THIS BUT THATS MY ASSUMPTION FOR ME ANYWAY. I ALSO SEE THAT BEFORE YOUR DIAGMOSED SOMETIMES IN SOME PATIENTS THEY SPEND SEVERAL YEARS ACCRUING MORE SYMPTOMS UNTIL THE BEAST FINALLY REARS ITS UGLY HEAD. BUT, YOU MAY NOT HAVE THAT. I HOPE YOU DON'T BUT AT LEAST HAVE IT CHECKED OUT. I STOPPED WORRYING ABOUT IT AND JUST AFTER I STOPPED A DOCTOR FOUND IT. I HOPE THIS HELPS SOME.

 
Old 02-19-2010, 05:51 PM   #4
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: ms

Linda, over the years Ive seen a few people post who take LDN....recently, not so much. Can I ask why you decided to use this treatment? Im sure you are aware that its not FDA approved for MS...why not use something that is?

I did some personal research on LDN after I knew someone who was using it for MS- she had great success for the first year and then started having relapse after relapse and eventually gave into Copaxone. Shes doing great on that. I do know about compounding, and assume you found someone locally who is doing this for you- have you had any other side effects? There are a ton of them. By the way, Hair loss and thinning is a definate side effect of LDN. The reason I asked where you are having it compounded, is there are certain pharmacies in this country who use better grade materials then others...you should research where you are getting your LDN and make sure that they are using the highest quality drugs- and not skimping on you, which also could result in side effects...
Just a thought.
Hope this protocol is keeping you well otherwise...
Nikki
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RRMS- dx 05

 
Old 02-23-2010, 08:03 AM   #5
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stormonto57 HB User
Re: ms

I have been using LDN for the past 6 months and have had no side affects, but I haven't noticed any improvement either. I have PPMS and I'm hoping it will stop or slow down the progression. I live in the UK and getting LDN is quite difficult, I've found a Emed doctor who prescribes it and a Pharmacy in Scotland that delivers it.

 
Old 02-26-2010, 07:42 AM   #6
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goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: ms

I take LDN for Lupus and Fibromyalgia. I will say that immediately I was able to taper off my pain meds but as time has past (6months) I find that it is not as effective as it was in the beginning. I now take 4.5mg after several months on the initial 3 mg. I have had to go back to occasional pain meds. but I do think that it has helped with my overall well-being as I feel more alert, less concentration problems, etc. I have not noticed any side effects other than some vivid dreams. I do wish that it would work as it did in the beginning as I had some of the best days I have had in years.

 
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