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Just taken my first dose of LDN!!!!

Hey all.

Hope ur good. So about 5 minutes ago i started my LDN prescription! Started on a really low dose of 1ml and will gradually build it up. It tastes quite unpleasant kinda like really bitter cough medicine.

I will keep you posted on what happens if anything!

My main symptoms at the mo are:

optic neuritis recovery so eye is still quite crap

fatigue

bit of back pain

occasional tingling in back and legs from first relapse last year

Lets see if this drug does anything!!

The journey really has begun now!xx

Hey Beccy thats great news so good luck with the LDN. Im considering trying LDN myself because i read positive results as far as its concerned. Can i ask you was the prescription difficult to get and what dose are you starting on. Beccy sorry for all the questions but im completely hooked by LDN and its potential benefits. Once again Beccy good luck and hope it works its magic for you

Keep us updated on how it goes :slight_smile:

Sam x

ok so day after i took my first dose!! Fucking hell! lol sorry. If any of you wanna try it be prepared for side effects initially.

Felt high and had a headache. Then at 10 pm randomnly felt so so nauseous. Fell asleep and woke at 2am and didnt sleep again tll 4am! Crazy sleep and very vivid dreams.

This morning am dreading my next dose. Prob gna cut it down to 0.50mg and raise it real slowly. Eurghhhhh feel so sick now!

Mikey my GPwouldnt give it to me so had to find another GP. He is called Bob Lawrence and he lives in swansea and sends u a prescription. Google him and he will come up. He has MS and takes it. Has taken it 12 years and hasnt relapsed!

x

Sorry to seem negative, but that is not a good measure of the effectiveness of LDN. For example, how long has he had MS? What type of MS does he have now? What is his current EDSS (disability scale score)? Did you know that about 65% of RRMSers become SPMS within 10-15 years of diagnosis?

I met a lovely woman last month who had a bad relapse 10 years ago which left her a 24/7 wheelchair user. Her MS has been completely stable since then. She has never had another relapse and she has not progressed in any way. She works full-time in a very challenging job and is an absolute joy to meet. Her miracle cure for relapses and progression? Nothing. She has never taken anything for her MS.

It’s a little known fact about MS - sometimes it simply stops. That’s one of the reasons why personal experiences really don’t mean anything about how something will work for someone else.

I do hope that LDN works for you, but please do not have unrealistic expectations. Many MSers try it and find it does nothing for them. Other MSers try it and find that it helps with a few of their symptoms. Some people with progressive MS claim that it has slowed or even stopped their progression. One thing I am 100% certain of and have read on here many times: people DO still have relapses on LDN. Just ask on Everyday Living if you don’t believe me.

Incidentally, I am not anti-LDN. I just don’t want people having false hopes.

Karen x

Thats fair enough Karen.

I totally understand. Its day 2 now so am literally just seeing what works best for me. At this moment in time i refuse to try any DMD’s but that could change in the future.

I am sure people do still have relapses on LDN I am not questioning that. Everyone is so different and if my MS can be managed successfully with the LDN and diet/exercise then that is what i will do for the rest of my life!

Rebecca

x

Just out of interest Rebecca, why are you refusing to take any of the DMDs?

It is well proven that the earlier in the disease course they are taken the more effective they are at reducing relapses, progression and accrued disability over time. Also new research is proving that they reduce the risk of early death due to MS.

Whereas there is absolutely NO evidence at all that LDN and diet and exercise can control MS.

The side effects of the DMDs are tolerable and manageable in most cases but the disease left to its own natural course can be a seriously nasty beast indeed. It is not something I would take the risk of mucking around with.

Given that there are effective treatments available why are you choosing to risk severe disability, loss of independence, loss of earnings and a potentially shortened life?

The drugs are surely preferable to that?

I am not trying to scare you but I do wonder sometimes if people really appreciate just how debilitating an illness MS can be? It is not a matter of just needing a walking stick in 10 or 15 years time. I have had it for 8 years and I am one of the rare and unfortunate ones who genuinely can’t take DMDs and so the MS has taken its natural course with me.

I am mostly bed ridden, occasionally able to use my electric scooter for short distances, in unbelievable pain, needing care 5 days a week (well, need it 7 days a week but it is only available for 5) and in and out of hospital for management. I truly wonder how things may have been different had I been able to take DMDs and had not been allergic to them.

Please don’t find yourself in 5 years time regretting your decison because with MS there is no winding the clock back…

All the best,

Belinda

Hi Belinda

Thanks for your honest and frank reply. I do appreciate it. I am sorry that you have been so unfortunate. Just because you went through such horrors does not mean that everyone will. As im sure you know everyone is different.

I appreciate the warning but at this moment in time I will not be taking DMD’s and my neurologist actually supports my decision which makes me even more relaxed about it.

With regards to LDN i have heard it has really helped people and therefore i would like to try it and see how i get on. i a not refusing to take them ever, As my neurologist said if i relapse again within a year then he will be more forceful for me to try copaxone but he said at the moment he is ok with me taking LDN. At the end of the day he is the specialist so i will be following his advice mostly!

I am so sorry you have had such a rough time.

Take care

x

Fair enough Rebecca. And you are right of course. Every one is different and MS does affect everyone differently. Let’s hope the MS doesn’t treat you too meanly…

I hope you continue in relatively good health and I am glad you have confidence in your neuro. That is half the battle…

B x

Yea i hope so too. My optic neuritis is still quite bad but its slowly getting better. Plus got my other eye so that will just have to be the dominant one! Only other real symptom i have is fatigue and i cannot stand it! Hopefully this LDN can help. Yea hes a great neuro. He said fact i was diagnosd young and have had 2 sensory relapses it bodes well.

I really am sorry that yours progressed to this stage but you sound very strong and i really hope you stay that way missy!

x

Hi Beccy,

You’ve chosen to try LDN over DMD’s which is fine - it has to be your choice - and no one is knocking that at all. Some people decide to go it alone and take no drugs at all, whilst others decide to take the traditional route of disease modifying drugs and / or medications to help with their day to day symptoms. We’re all different.

But I also welcome the points that Belinda and Karen have made in their posts.

I think it’s important that those who have been newly diagnosed and those who are in limboland realise that LDN hasn’t been scientifically proven to have any effect on ms and in particular the long term progress of ms.

DMD’s have.

Personally, LDN isn’t something that I would consider unless I’d exhausted all other tried & tested options. That’s just my take on it though.

Without doubt it’s very much a personal choice and I really do hope that LDN does help you. Fingers crossed that your Optic Neuritis improves and that your fatigue becomes more managable.

Debbie xx

Hi Debbie

Thanks for your post and i totally agree with you.

I am due to take my 3rd dose at 11am and i can already notice a difference albeit small but its definitely there so hopefully this works for me and i take it for the rest of my life.

Along with changing my diet and giving this LDN a chance I hope this is the one for me! Obviously if i relapse again within a year then yes i prob would consider copaxone but at the moment its very much out of my mind!

xx

It’s worth keeping an eye (no pun intended) on ‘news’ and ‘research’ too Beccy, there’s lots going on.

I think it’s more the ‘long term’ that others are making a point about - which I agree with. Always keep your options open. Fingers crossed for you.

Debbie xx

Hi Beccy! Thanks for the doctors name i will try to make contact with him over the next few days. Day three for you already eh? so what dose are you going to try next? I understand the dose varies from person to person. I had a telephone consultation with my doctor today and he wouldn’t prescribe LDN for me, just advised me to contact my neurologist. Hey beccy good luck with your third dose!

Hi beccy. I was just wonderin how you were getting on with the ldn? I spoke to doctor lawrence on the phone and hes given me loads of advice. Ive had a few bad weeks here with my health so its taken me ages just to find the energy to make contact with him but im glad i did. I think im going to give this ldn a try as my original symtoms are still preventing me from moving forward in my life. Anyways thanks again for his name and i hope your ok

mikey x

Hi mikey sorry hve only just seen this!!! so happy that you have decided to take it!! If u want to talk more about it pm me on here? Yea ive been on it 4 weeks now and notice a small difference but its early days still!

hope to hear from u soon x