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LDN

I've not been here in quite a while, hello to everyone and I hope all are doing well!!

My husband is doing well himself, he just passed his 2 year anniversary of diagnosis and I'm happy to report still no relapses or new lesions, although he hasn't done new MRI's in a while, he's decided they are just money grabs and unnecessary until or if a episode ever happens, then maybe to see. Still no DMD'd, however he has begun taking LDN (Christmas 2014) and is feeling great! His fatigue has dissipated by 90%, he is no longer worn out by late morning! I see such a change in him as the fatigue was his worst symptom. He is still limping, but he also has NOT jumped on the physical therapy or exercise portion of OMS. I keep pushing but its like beating a dead horse! The only draw back to him feeling better from the LDN is that he seems to think he's ok and can veer off the nutrition at times... At first he was so scared he'd try anything to get better, now he seems a bit complacent... anyway, just wanted to report the positive effects we've seen from the LDN. Who else is using and what are your experiences?
Hi KT
I hope you and you husband are well.
I'm thinking of going on LDN. I've been on the diet for 7 and a half months. And been really disaplined on it. I also hake the flax seed and vitamin D.
I've been weak on right hand side for over a year and bad fatigue for just as long.
I hope LDN will help with fatigue and anything else would be a bonus.
I will let you know how I get on with LDN

If anyone else is on it, it would be great to hear how you find LDN. The good and bad.
Thanks.
Axo
Hi I have been on it about a year and it has definitely helped fatigue.
Dx 1992 OMS 25-2-09
Kashu wrote: Hi I have been on it about a year and it has definitely helped fatigue.


That's great to hear Kashu, fatigue is so bad for me, I'd sleep 24 hours a day if I could.
I'm realistic and am not expecting miracles by going on LDN.
But to have some energy back would be amazing.
Did it help in any other ways for you?
And have you been attack free?

Hope things are going well for you.
Ax
My main reason for taking it was to hopefully help my bladder but unfortunately it didn't. I wish I had access to it way earlier.

A trial on then ofd it showed a real difference to my fatigue so continued on it.

It could well be helping in ways I am unaware.

I think it is worth trying.
Dx 1992 OMS 25-2-09
Thanks for info Kashu.
I'm definitely going to give it a try asap.
No harm in giving it a go.
Axo
Hi kashu
I wonder what dosage of ldn you are on and what dose you started on etc?
Have you noticed any other changes to any sympotms
Hi I think I started on the 3mg dose then 3.5 and then straight to 4.5 that I am on now.

Fatigue is still the main symptom I can say with certainty it controls.

I so wish it had helped my bladder. If I had got onto it in the beginning it may have prevented it.

As with OMS the sooner you start the better.
Dx 1992 OMS 25-2-09
I have been taking LDN for 18 months. I think it has helped with fatigue, although that continues to be an issue. I don't have any brain fog and my last MRI was stable. I used to have to get up at least three times during the night but now it is usually only once so it may be helping with bladder (who knows really?) From countless anecdotes that were collected and put onto a double CD (my gp has it) everyone said the same thing. "It will stabilise the condition" - that is, stop further progression.
I've been on LDN for 3 weeks and it's awsome!
So much energy now and happier.
I've been on OMS diet for 8 months now but felt I should try LDN.
So glad I did.
I'm still only on 1ml. It's important to slowly increase dose age.

There is a great LDN face book group called Lowdose Naltrexone trust.
They have all the info you will need and support all the way.
Good luck if you chose to give it a go.
Ax
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