This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello there:
I have looked through all the topic threads on LDN and have found no info . I researched the web and received some info about the drug but I would like to learn of the improvements on MSers that are using it and what the side effects can be i.e. additiveness etc. I need this info so I can discuss this with my husband who is PPMS (EDDS 6 self-assesed ) with spasitiy in legs( helps a bit with Botox) Walks with cane very short distances, fatique, neck soreness and stiffness and occasional pain in the groin area. There are other issues but he doesnot discuss them, accepts that this is just the way it is. The only other drug he takes is a low dose of Bacolfen and supplements.
We are scheduled for Poland sometime in August and I have to thank TIMS from the bottom of my heart for all the phenomenal research and invaluable info that we have received. I am searching constantly for answers for him and I say, I will grab the bull by the horns but he has to ride it...
Many regards Diana
PS Sorry for the long report and I will likely edit it before long.

Hi Diana!
I started with LDN in November 2008. I had big problems with fatigue. I was getting better really after couple of days. I did not feel any side effects but I have to say my symptoms went worse only for one day.

I have got a stent and still take LDN.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Hello Erika,

Why are you still taking LDN after stenting? Not that I think you should not, but I'm just wondering what are your thoughts, motivations for that.

Yannick

Hi Erika:
A big thank you for your quick reply. Have you learned of any other improvements with LDN? Again, I want to let you know how remarkable that you are!
Take care Diana

To be honest I have no idea what is going on in my brain. This was first time in my life I had the procedure.
LDN does not harm.
Who knows for sure if it is good, bad or does not matter if an MS patient takes LDN after stenting?
I simply do not know what to do. LDN has been helping me so I continue.
It does not mean you are completely cured from MS very next day after stenting.
I just know my left jugular vein - blood flow, is cured.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Yannick -

I am also taking LDN after my stenting. There are a few "stenters" here on the forum who have resumed the LDN. One member had been on Novantrone which is now linked to a kind of cancer. LDN is known to help treat cancer. I resumed because LDN balances your immune system and I thought that if there is still a chance of an immune component in MS, then the LDN would be my drug of choice.

Sharon

Thanks to both of you Erika and Sharon for your comments. I do take LDN too and I understand your risk/benefit decision.

Broomdancer, LDN did not improve any past symptom for me. But I do think that it slows down the deterioration. Something that I'm sure of, is that it's very cheap with no side-effect at all and possibly a good benefit. So I think it's a no-brainer for me.

Yannick

Mod's c'mon - this is a ccsvi forum!!

Broomdancer - there is an ldn forum here too -

Jay 123
Where is the forum?
I understood that this was a forum to help us all. Incidently, it does relate to ccsvi to understand what drugs that can aid in the long or short term following the procedure.
Cheers Diana

Broom,
In the list of forums on TIMS it's the second one, right below the CCSVI.
Sorry to seem rude, but we are getting a ton of off topic posts here on the CCSVI forum and the mod's don't seem to do any moving of them.
Thanks
here's a direct link to it.
http://www.thisisms.com/forum-10.html

123

Yes, but that is the spot to post the questions if you don't see your answers, not here. The ldn users will have the answers for you, I'm sure.

123

Hi everybody,
First of all let me say thanks for the effort that has been put in to make this a wonderful and very informative website! Kodos to everybody putting an effort here!!!

I have a question regarding LDN and CCSVI
CCSVI says that MS is caused by a blokage and the bloodflow is restricted
....why does LDN make me feel so good???...what happens to the blockage and bloodflow restriction when LDN is used???...I've been on LDN fron August 2008....LDN makes me feel good!!!...but how does it relate in terms of the blockage!

if somebody can help me with this doubt that I have it'll be great!!!
HCN

You feel so good on LDN because you have 200-300% more endorphins flowing through your body the day after you take it. LDN should have no impact on bloodflow or blockage as it doesn't thin your blood or make your heart beat faster.

Endorphins play a big part in regulating immune system balance, so does vitamin D. People with MS often are found to have low endorphin levels and low vitamin D levels.

As you age it becomes more difficult to produce endorphins. People who live in parts of the world where there is a lack of sunlight (vitamin D), or they have a lifestyle lacking in sunlight, or a diet lacking in vitamin D, have higher incidences of MS. Further, people with MS who exercise alot, produce endorphins, often find their MS progresses at a slower pace.

bebop