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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

Jodylee 01-09-2009 07:37 PM
Well, I'm off Tysabri (I had my last infusion on Nov 17) and starting LDN as soon as Skip's pharmacy ships it to me :). I was going to go without any MS med for a while but I changed my mind :rolleyes:. I'm really excited and hopeful about LDN:). I haven't had a chance to read through this thread yet but I will soon. Wish me luck!

lady_express_44 01-09-2009 09:20 PM
Good luck, Joellelee!

I agree that you really don't have anything to lose at this point, if you had no intention of trying another DMD right away anyway. And, if it works for you, you have potentially lots to gain. :hug:

Did you have trouble getting an rx?

Cherie

SallyC 01-09-2009 10:47 PM
Good Luck Joelle..:yahoo::hug:

Jodylee 01-10-2009 09:57 AM
Quote:
Originally Posted by lady_express_44 (Post 442027)
Good luck, Joellelee!

I agree that you really don't have anything to lose at this point, if you had no intention of trying another DMD right away anyway. And, if it works for you, you have potentially lots to gain. :hug:

Did you have trouble getting an rx?

Cherie
Thanks Cherie :). I had no problem getting the scrip. My neuro prescribes LDN whenever anyone wants to try it. He faxed the scrip to Skip's pharmacy within an hour after my appointment. Skip's is only about a half an hour drive away from me so I should have it by Monday :D.

lady_express_44 01-10-2009 11:47 AM
Quote:
Originally Posted by joellelee2000 (Post 442280)
Thanks Cherie :). I had no problem getting the scrip. My neuro prescribes LDN whenever anyone wants to try it. He faxed the scrip to Skip's pharmacy within an hour after my appointment. Skip's is only about a half an hour drive away from me so I should have it by Monday :D.
Well aren't you lucky! :) Did (s)he happen to mention whether (s)he had an opinion or direct experience with the use of LDN?

The neuro's out of our MS Research Center will rx it too . . . but they didn't when I asked 4 yrs ago.

Are you starting off with 1.5mg? Do you have any "permanent" symptoms you are hoping to alleviate, or are you trying it mostly to reduce relapses and progression?

Cherie

Jodylee 01-10-2009 05:43 PM
Quote:
Originally Posted by lady_express_44 (Post 442326)
Well aren't you lucky! :) Did (s)he happen to mention whether (s)he had an opinion or direct experience with the use of LDN?

The neuro's out of our MS Research Center will rx it too . . . but they didn't when I asked 4 yrs ago.

Are you starting off with 1.5mg? Do you have any "permanent" symptoms you are hoping to alleviate, or are you trying it mostly to reduce relapses and progression?

Cherie
Honestly, Cherie, I'm hoping for any/or all of the above results :). I really do hope that it helps with the fatigue though. My neuro (he) mentioned the small study done on LDN and said that some of his patient's have had some encouraging results. I selfishly hope that I'm one of them :).

Kitty 01-10-2009 06:56 PM
Quote:
Originally Posted by joellelee2000 (Post 442511)
Honestly, Cherie, I'm hoping for any/or all of the above results :). I really do hope that it helps with the fatigue though. My neuro (he) mentioned the small study done on LDN and said that some of his patient's have had some encouraging results. I selfishly hope that I'm one of them :).

It's not selfish to want to feel better! That was one of the first things I noticed after I started taking LDN......the fatigue was nearly gone! I remember the first day I actually felt like doing something I overdid it big time and paid for it the next day but I didn't care....it felt so good to just feel like doing something! I've learned to pace myself but sometimes I still overdo it. :rolleyes:

I have permanent damage from a really bad flare from a couple of years ago (numb right hand and arm) and it hasn't done anything to relieve that. That would have been a miracle if it had! But, I'm very happy with the results I've had with it.

LarryLDN 01-10-2009 10:15 PM
Quote:
Originally Posted by Desinie (Post 438007)
Hi Lady,
I'm doing ok. Nothing much to report. I've been lightheaded a bit today, but don't attribute it to the LDN. Tonight's my 5th night on 1.5 mg. I'm optimistic , but cautiously so. I'll give it a better try this time. I'm on Copaxone too so, I feel somewhat doubly protected I guess lol I'm not sure how long I'll stay on 1.5 mg. I'm thinking maybe a month or so. What dose are you taking, Lady and how long now?
Go to 3.0 as soon as you feel ok about taking LDN. Call me if you panic ;)

:hug:

Lady 01-10-2009 11:07 PM
Hi Larry,
I sent you a PM but I guess you are off in cyberspace somewhere right now. Talk to you later.:hug:
Lady

SallyC 01-12-2009 09:14 PM
I just received an e-mail, from a friend and she is taking 4AP and Kawalawala(sp) with her LDN. She just started, so the reports are not out yet....I'll let you know..:)

How many people here, boost their LDN with other supplements or meds and does it make things better for you?


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