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Thought it was time that I added my bit to the topic.

I could really relate to your post on 3rd May, Jenpen. We both have SPMS and have also been taking LDN for 4+ years. For my part I would not stop taking it for anything and believe I have stayed reasonably stable except when dealing with stress (sound familiar). The diet is extremely important too.

I am also using walking stick plus scooter for distance and although I do think at times I am not as good as I was, I still feel very fortunate after having MS for 26 years.

To me, taking LDN instead of the other "toxic" alternatives is a no-brainer. Very safe, cheap and effective, oral and certainly worth trying before the other dmd's which can be taken later if necessary.

Have recommended LDN to several others and all but one has had positive results.

Best wishes to all,

Dizzy
Yes Jenpen, my recent experience with LDN seems to concur with your understanding of how it works.

i.e. When I first adopted the OMS approach, everything improved greatly except I still was getting loss of bladder control and there were days when the fatigue would totally overwhelm me. Although I had known about LDN for some time I put off using it because I didn't want to take a drug, but I was doing so well in the improvements to my other symptoms (to do with walking and co-ordination), it just made the symptoms I did still have seem worse. When I started using LDN control of the bladder was almost instantaneous it seemed to me, with the fatigue lifting some time later. I was taking 4.5mg every night for around 18 months and I didn't consciously stop taking it, I just forgot to take it for a few days and came to a sudden realisation that, even without LDN I still retained bladder control, and wasn't tired, so I continued to not take it for the next year or so.

Then, after a period of sustained pressure and stress I suddenly realised that I wasn't making it to the toilet in time and was not getting through the day very well at all, in terms of energy, and my partner suggested I try the LDN again and bingo it seemed to me that everything improved. This happened a couple of times.

However, I think that maybe this was some kind of auto-suggestion - because I believed it was going to make the difference it did. I think this because this year has proven to be extraordinarily stressful, but I have not taken LDN (kept meaning to but somehow did not), and yet my bladder and fatigue symptoms have not overly come back. They are there but not to the same levels as prior and I believe this is due to my attempts at trying to change my perception of the events that have been happening around me.

So it could be very likely that sustained use of LDN is how it works and my 'dipping in' and 'dipping out' were more to do with my perception of what was going to work, rather than the drug itself, either way works for me!
I am going to the doctor tomorrow to ask for LDN.
I have printed off information for the doctor.
I rang around today to see if I could find a compounding
pharmacy. There is one in Yandina in Qld, the closest
I could find. She said that if they had to compound it
it would be very expensive probable $140 per month.
Has anyone else had the doctor prescribe the readily
available 50mg tablet for you to do yourself
by adding distilled water and using a dropper.
Anyone out there in Queensland taking LDN who can give
me some advise.
Maree, that's way too expensive. I get mine compounded into capsules by Ainslie Pharmacy in the ACT, although I live in NSW. They are happy to work by fax/post. They charge $121.25 including postage for 100 capsules - about 3 months' worth. I'm on 3mg but it wouldn't be much more for 4.5mg, as the compounding part of the cost is a flat amount.
http://www.ainsliebluebellpharmacy.com.au
Thanks Jen,
I rang them and they were very nice and helpful.
I also rang one on the Sunshine Coast and they
said they do it there too.
What does your script say?, does it say 1.5mg capsules or the 50mg
capsules to be broken down? Just wondering as the doctor I am going to
has probably not heard of it!
Thanks
From memory (I always post them the script), all it says is Naltrexone 3mg daily. The pharmacy buys the 50mg tablets and grinds them up, adds filler (usually avicel) and fills the capsules. They told me they do it all the time for MS patients.

I started on 1.5mg, then moved to 3mg, then later to 4.5mg. But I have settled back on 3mg because I was having muscle spasms (before even starting LDN) and I found out that people who have muscle spasms are usually better off at the lower dose.
Thanks Jenpen so much for all your help,
its great being able to talk to someone who has been down this
path.
It's a pleasure! :D
Another doctor says no he won't prescribe LDN unless my neurologist
or the MS Clinic will OK it. I guess I have to keep trying other
doctors. I feel deflated.
Maree, there is a list of sympathetic doctors/practitioners here in the Links section (Australasian Integrative Medicine Association). You should be able to find someone in Queensland.
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