Hi gang, well after much consideration I have finally decided to give LDN a try!
I’ve always put it off because my MS has been so slow progressing… but I have had progression in past few months so figured now was the time to take the plunge.
Both my GP and neuro have previously refused to prescribe it… so I signed on with e-med and Dicksons Pharmacy have already emailed to say it’s in the post.
Gosh!!! Nervous and excited all in one go!
Whammel… got a feeling this will put a smile on your face.
I’ll keep you all updated (naturally! Chances are you’ll get sick to death of constant updates).
Not sure I understand the logic of waiting until you get worse before trying ldn, but what the hell and better late than never. Remember to start on a low dose (say 1ml) and build up slowly as you get used to the stuff and all should be fine.
Being a cautious chap, I will wait and see if it actually works before bringing the bunting out, although I remain in a state of readiness and look forward to the updates.
Hope the LDN works wonders for you, i keep thinking about trying it,have done for years,but darent take the plunge,hope i can pluck the courage up to try it,look forward to hearing how you are doing on it.
I hope it works out well for you Pat, only got to 4.5ml for a week then decreased again, 2.5 - 3 ml seems ok for me
Whammel, like you, I’m curious about the long term… I’m relatively newly Dx so I don’t know how quickly things would have progressed otherwise BUT I am happy to be taking it for the plus points I have found
With all the pills I take (for coping with MS side effects) and as a likely PPMS’er, I feel like LDN is the only thing that actually helps me treat my MS
I have been taking ldn for ten years now and while my walking has got slowly worse, nothing else has and all the other benefits are still with me. There is little doubt in my mind that I would be in a very dark place today without ldn and have no intention of stopping any time soon. Ok ever.
Glad to hear you are also getting some decent results and long may they continue…
Sorry I haven’t been around much, just work stuff getting in the way.
Glad to hear you’ve taken the plunge Pat, I know I mentioned a while ago that I was going to give it a go but still haven’t plucked up the courage. Did E-med ask you for written notification from your GP? I spoke to my GP and he wished me luck and would be interested in how it worked out. He does prescribe LDN to some patients but I presume its nothing to do with MS. Who knows, if it does work for me (when I get my **se in gear to try it) he may actually prescribe it for me.
my GP prescribes it alright but at 50mg upwards, so he was somewhat baffled by the concept of taking such small amounts. He wasn’t completely against the idea but was worried that not signed off for MS. I will go back to him if I have no luck getting it from gastro/neuro etc. as I think he was just worred by new concept. Given how well everyone keeps saying I look it certainly has done me no harm whatsoever. And the cost of LDN is nowhere near as scary as say, not working
Do try it tho, it’s not a dangerous drug and has virtually no side effects, compared with all the didgy old rubbish we have to take to control random side effects, it feels a lot kinder to your bod
There has been a strange sort of logic to it really.
Firstly because my MS was pretty stable for ages and I didn’t want to rock the boat… esp as I do know some people over the years on this forum who have not had a positive experience of it even on the very low starting dose.
Secondly, I liked knowing it was there as a sort of ‘light at the end of the tunnel’. I could always think to myself ‘well hey if things start to get worse I can always go on LDN’.
I liked that feeling… and aware that once I start it (hopefully this weekend) if it does NOT help my symptoms than I have lost that safety net.
Hope that makes sense.
Thanks all for good wishes… I’m hoping it will arrive tomorrow.
Thank you Sonia, I’m all for things that are kinder to your bod . From what I’ve read the main side effect is not being able to sleep very well when you first take it. Did you find this?
I’m on amitriptyline tho not a prticularly high dose, so no problems at all.
One Saturday morning I had a funny dream about a letter, one I was waiting for in truth, I would certainly agree with vivid as I could clearly picture it when I woke up! But nothing else at all
My GP won’t prescribe it at the moment so I’ll have to get it privately. When I looked on the E-med website it said when you first join they will ask for a confirmation letter from your GP so was wondering if they asked you the same? To be honest, I thought I could sign up, get a prescription, send it off and hey presto but when I saw they need a eltter from your GP I just thought more hassle and delay in getting the stuff so I just didn’t do it Silly I know but I think I was feeling a bit rubbish at the time…which never helps. I shall be plunging this weekend
Hi Hon, they just need to see a letter that confirms you have MS. I just scanned the last letter I had from neurologist that said at top ‘Diagnosis Primary Progressive Multiple Sclerosis’.
You fill in the form on E-med and just put ‘Dicksons Glasgow’ where it asks for pharmacy and then you make the payment of £20 to register for a year. Then they email you and ask for the letter… scanned or faxed. Then the doctor emailed me to say he would prescribe and I made the payment for the prescription for 3 months. (already forgotten how much that was but wasn’t much).
Then you get a email from Dicksons saying they have the prescription. You join the Dicksons site and go into the prescription bit and you see your prescriptions. You pay online for the first month… £19… and then you get an email to say they have dispatched the LDN.
It says on the site that you will have a consultation… but I didn’t. Obviously the info in the neuro letter was enough.
Let me know if you need any other info hon. It sounds complicated but believe me if I did it anyone can!
Hi Oonagh, When I started LDN I wasn’t asked for a letter but was told I would have a phone consultation…needless to say I was worried at the prospect…I needn’t have been. When the Dr called I was asleep…being the protective soul he is and not knowing who was calling my husband didn’t wake me, just asked if he could help. The Dr explained who he was, my husband was easily able to answer all his questions and hey presto here I am 11 months later…very very happy that I took the decision to start it. In my case it has helped enormously with both bowel and bladder incontinence. Hope if you take the plunge you will be as lucky as I have been. Good luck, Nina x
Hi Pat, Good luck with LDN - I do hope you receive some benefit from it. I was really hoping it would help me, especially my awful bladder but unfortunately it did not help at all and I was very disappointed. Whammel’s right, do start on a low dose and increase very slowly or it can makes things worse! Speaking from experience! Fingers crossed for you that all goes well and that it helps! Teresa xx
