Daisy I am sorry to hear that the LDN didn't help. Did you get symptom relief of any kind while taking it? Did it help in someway?

Lesions come and go. A MRI is just a picture of the brain that day. Did the lesions show enhancement (bright spots with GAD)? Did you relapse of feel worse this past year? Just curious.

I was off LDN for two and a half weeks due to pain meds I had to take, and conscious sedation, during my 2 CCSVI procedures. I felt the difference in a day or two from not being on it.

Can you take both Ty and LDN? They may compliment each other. I know the increase in endorphins I missed right away. My mood was cruddy. I am back on LDN again and it helps me alot. I wish it heped you Daisy.

I hope you do well on Ty if that is the one you choose to take. Good luck to you. We all have to do what we feel is best for ourselves. No two alike.

I truly haven't felt any remitting since being diagnosed in Jan.....in fact, I asked my neuro if he would still consider me RRMS since I have not have a period of remission.....I actually have increased symptoms.

I don't know if the LDN helped me at all.....I really never felt any different on it.

I was against the ABC-R, because after my research, up to 29% effective just wasn't enough to put myself though the side effects......and I read so much about people that did not respond at all on the ABC-R's.

But now that I have more symptoms and more lesions, honestly, I am scared to do nothing. My neuro suggested the TY or Gilenya.....in fact, I am not comfortable with either, PML with the Ty and the newness of Gilenya. my neuro stated that we could start with the Ty (because no PML in the first year) and then switch to Gilenya after it has some actual data on patients using it.

I am really disappointed, I so wanted to be one that the LDN worked for.

hi all - I've had 5 tysabri infusions but want to start LDN. It's ok to take them together, right?

I'm not sure Roady. Best to ask your Doc or pharmacist. Maybe someone else here can tell you.

Welcome to NeuroTalk.

my MS doc said she was ok with LDN, but I think I asked about it before I started the tysabri... but yeah I'll check back in... any other thoughts out there? and/or people doing the combination?

thanks!

Hi Roadaction,
Welcome to Neuro Talk. I have heard of people taking both Ty and LDN. Even Copaxone is okay. Just the Interferons iare a no-go.

It also depends how long you are on Ty. If you just started, it is better to see if Ty is helping you..then add LDN so you know which is working or not.

I am not a doctor so ask your Ty doctor at infusion time. Some Neuro's may not know for sure. The Touch program may have protocols you have to follow. When is doubt ask. Good luck to you.

My neuro gave me LDN while on Ty but I only took it a few nights because of sleeplessness from LDN & dry mouth bothered me.

Hi,

I'm new to this forum and also just started taking LDN about a month ago. I'm taking 1.5mg and will go up to 3mg tonight or tomorrow night.

I'm wondering if LDN has helped anyone with brain fog and energy. These issues are really hard for me. Along with balance and coordination. The LDN seemed to help initally but am not so sure now. I'm hoping increasing the dose will help. Have other people found that increasaing the dose helps to reduce symptoms more consistently?

I have a brain injury (atrophy to part of brain) from severe infection decades ago. I do not have MS but since there are some symptoms in common and LDN, I thought I'd post here. I'm glad to have the opportunity to connect with others who have neuro challenges!

Thanks!
-Hazzell

Hi Hazzel, welcome to NeuroTalk and to LDN.
I started on 3mg in April of 2003 and went up to 4.5 a couple of yrs? later. I didn't notice any difference, but I was already on an optimal dose.

You are on a pretty low dose, lower than is recommended, so you may notice LDN working better at 3mg.

Good luck and please stick around to enjoy our forum and to keep us posted..

Hi Hazzell,
Welcome! That is a hard question. I know it works for MS people, in many ways, but you don't have MS but a brain injury from the past.

I don't think any of us knows if it will help you. It might with energy, some pain relief, elevate your mood with higher Endorphins in the body. I am thinking it can't really hurt you in such small doses we take, so it probably won't hurt you to try it. Never use the slow release form.

Have you read the LDN website? It may have more info there. Nice to meet you and good luck to you.

http://www.lowdosenaltrexone.org/index.htm

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