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-   -   LDN Information & Check-in 2 (https://www.neurotalk.org/multiple-sclerosis/71392-ldn-information-check-2-a.html)

Lady 06-03-2009 12:11 AM

I do take an aspirin when I get over-heated too. Then I lay on the bed. Usually I fall right to sleep exhausted, so I am forced to take a nap.

My face and neck gets red, like children do when they are running or playing in the hot weather. Only I am just out in it.:(

Kitty 06-03-2009 10:36 AM

Interesting reading of anothers' experience with LDN:

http://ms.about.com/b/2009/06/03/jul...th-15.htm?nl=1

Twinkletoes 06-11-2009 02:21 PM

Anyone else take an LDN survey from Skip's?
 
Skip's Pharmacy just called and wanted me to take a 5 min. survey. I never do surveys, but I made an exception for this one.

He asked the kinds of questions you would expect, with one of the first being "Why are you taking LDN?" When I said MS, he asked if I had been diagnosed by a doctor. Instead of being True/False, the choices were "Consistent" or "Transient."

My response to what improvements I've experienced was that I have more "stamina" and more "clarity of thought." He asked if an MRI had shown any improvements since taking LDN, but I haven't had an MRI since last August when I began. He also asked if I had been able to reduce or discontinue any meds since LDN. I said yes (ADs) and he asked which one.

When it was finished, I asked what the info would be used for, but he didn't know.

Any thoughts on where this survey might lead?

SallyC 06-11-2009 08:20 PM

Skip does these kinds of surveys periodically and he takes a big part in the LDN Symposium every year. I think it's in June or July. so he's probably gathering info.

Thanks for taking part..:hug:

Lady 06-12-2009 01:27 AM

LDN check-in.

Hi All,
I went to my MS Specialist last week for my regular check-up. Again, she was very surprised at how many improvements since the last visit. She gave me a very long exam, with lots of testing, and said, "You are making me a believer in LDN."

She does not prescribe it for me, so I didn't ask her for a script. Let her keep tracking me and one day she will prescribe it to whomever asks for it. :)

I get it from my PCP. The MS doctor had her nurse call him, to ask him to write it for me. She only does the DMD's.

I was thinking. I bet someday they will come out with a drug, so similar to LDN for a MS treatment drug, and charge a high price for it.

We know there is no money to be made with LDN for the researchers. So if they change one ingredient or add something to it, they can get it to clinical trials and get it FDA approved for MS. :D
Just my late night thinking. :hug:

lady_express_44 06-12-2009 02:10 AM

Quote:

Originally Posted by Lady (Post 522351)
LDN check-in.

Hi All,
I went to my MS Specialist last week for my regular check-up. Again, she was very surprised at how many improvements since the last visit. She gave me a very long exam, with lots of testing, and said, "You are making me a believer in LDN."

She does not prescribe it for me, so I didn't ask her for a script. Let her keep tracking me and one day she will prescribe it to whomever asks for it. :)

I get it from my PCP. The MS doctor had her nurse call him, to ask him to write it for me. She only does the DMD's.

I was thinking. I bet someday they will come out with a drug, so similar to LDN for a MS treatment drug, and charge a high price for it.

We know there is no money to be made with LDN for the researchers. So if they change one ingredient or add something to it, they can get it to clinical trials and get it FDA approved for MS. :D
Just my late night thinking. :hug:

I've thought about that too, Lady. I even wondered at one point if I should be telling people about this stuff, in case someone catches on and finds a way to charge $50K a yr for it ... :)

My MS Specialist just says "I guess I'll see you next year then ...". I have to be her easiest patient.

I am thrilled that it's worked out so well for you, especially so far into the disease process. I know you were very nervous with all the other medical issues you had to contend with . . . but I haven't really run into anyone that has had any problems from LDN. I always think about potentially steering even one person wrong though ... even now.

They should just put it in the water supply, don't you think? ;)

Cherie

Lady 06-15-2009 12:48 AM

Put it in the drinking water? Nah! I think I would buy a bottle of water though, if it had LDN in it. Good idea, ya think? Bottled water, by the case, at your local supermarket. No prescription necessary.
Cure whatever ails ya.:D

Seriously, I am also very happy. :) I laugh at jokes and TV shows, and always have smile on my face. I find myself humming or singing too. I guess because I am happy for the improvements.

I am feeling so much better, and lots of residual stuff is gone too. It sure makes me wonder why I was skeptical to try it, and then took so much time to research it, that I thought I waited too long for it to work for me.

Now, six months down the road, and it seems to be helping more each week. Still on 3.0 mg. It seems to be just right for me.

While talking to the Neuro I was telling her about some symptoms I had when I was 16 years old. She said, they could have been MS symptoms back then. I never thought about that. In my early twenties maybe, but not as a teen I thought. I guess I'll never know that answer. :confused:

As a kid I had plenty of sunshine, lots of fish, cod liver oil every morning (icky!) veggies and fresh foods but I was sickly. I caught every childhood disease, so had plenty of anti-bodies to illnesses built up. Hmm I had allergies too.

So I can see my body getting overactive, and still attacking itself, even when the illness was gone. Autoimmunity to inflammatory.

lady_express_44 06-15-2009 10:14 AM

Quote:

Originally Posted by Lady (Post 523421)
While talking to the Neuro I was telling her about some symptoms I had when I was 16 years old. She said, they could have been MS symptoms back then. I never thought about that. In my early twenties maybe, but not as a teen I thought. I guess I'll never know that answer. :confused:

As a kid I had plenty of sunshine, lots of fish, cod liver oil every morning (icky!) veggies and fresh foods but I was sickly. I caught every childhood disease, so had plenty of anti-bodies to illnesses built up. Hmm I had allergies too.

So I can see my body getting overactive, and still attacking itself, even when the illness was gone. Autoimmunity to inflammatory.

I've been able to go back to about 19 yrs old with my symptoms, and according to my daughter's neurologist, if the same thing happened now, they would have dx me (at least "probable) on that basis. I don't believe that, knowing what others STILL go through to get the dx ... but it definitely would have been confirmed at age 31 if I had let them test me. I didn't see the point in knowing though as there were no drugs available to help anyway, and I could still work.

I have a ton of allergies too, with lots of sinus problems, bacterial infections, Ulcerative Colitis, and a problem with processing calcium. On that basis, I'm glad (and kinda' surprised) LDN worked for us, cause I really thought I'd have trouble with this med too.

Cherie

SallyC 06-15-2009 10:48 AM

Quote:

Originally Posted by Lady (Post 523421)

As a kid I had plenty of sunshine, lots of fish, cod liver oil every morning (icky!) veggies and fresh foods but I was sickly. I caught every childhood disease, so had plenty of anti-bodies to illnesses built up. Hmm I had allergies too.

So I can see my body getting overactive, and still attacking itself, even when the illness was gone. Autoimmunity to inflammatory.

I think you've hit the magic nail, right on the head. And now, LDN, by getting our endorphine count up to normal and thus helping to correct our faulty immune systems, has, hopefully, stopped that process.:) Too late to go back and wipe out permanent damage, but stopping MS from getting so much worse, for us SPMSers and all, is good......for now......

FluteMaker 06-18-2009 03:43 PM

well here i am, 9 months on LDN and i havent grown that extra limb or that third eyeball.if there are any 'hidden side effects' i havent come across them yet. all i know is that i was diagnosed with MS 8/20/08, i was on a walker and couldnt make it more than 4 hours without a nap. between 7/22/08 and 8/26/08 the MRIs showed some progression of a big liesion in the CC area.and then i started LDN 9/10/08.from 8/26 to 12/30/08 .....no progression at all.
its not all cherries and whipped cream though. i still have my days where i get tired pretty easy,i still have my moments of 'genious'. but to tell you the truth, i would hate to see what it would be like without the LDN.


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