Jackie has been trying Low Dose Naltrexone (LDN) as we have heard of some very good results of this when used for Parkinson's and MS. Unfortunately as had as we have tried we can find no record of anyone trying the drug with MSA.
It's not easy as the body treats it as a toxin and so the dose has to be built up slowly and there are side effects (albeit not lasting we are told) of headaches and nausea. The drug has be be ordered through a private prescription but is not over expensive at about £19 per month. If it gives any relief it will be worth every penny.
Jackie is now at 2.5ml per day and one builds to 4.5ml in 0.5ml weekly graduations. So far she has all of the bad with none of the good! Headaches and some nausea but these have been made more manageable since we shifted taking the drug from mornings to last thing before bed.
We have always said we will not chase rainbows and accept 'what will be will be' but the positive reports we have had led us to believe, as our neurologist said "what have you got to lose through trying it".
Needless to say, if any reader has knowledge of LDN used with MSA, then please get in touch.
If we have anything further to report we will.
Take care, Ian
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Yanno
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A bit of input. We sourced some cannabis oil. Small fortune to get, but worth trying we thought. Followed all instructions on how to use it medicinally. We were told to slowly increase the amount over about 6/8 weeks, and not to expect to see any result for about that time. We discontinued use after 7 weeks, as Billy found it made him feel worse. He said his legs were like jelly, and at that time he was still able to stand a bit, and he felt permanently dizzy. He felt there were no benefits of any sort.
It's so difficult isn't it - we don't want to chase rainbows and always hoping a minor miracle will happen - we have always thought it is best to live for everyday and try and make every day special. However, when one hears of the benefits others have had from some unconventional treatments we have to think twice.
In our case the neurologist said he had seen some remarkable improvements with Parkinson's and MS patients taking LDN but others have had no benefit...but he no experience with MSA patients.
Jackie is now a number of weeks in and we thought we would try and persevere even if only for those who follow to say at least one MSA sufferer did or did not get benefit from taking LDN.
In the meantime I may pinch a spoonful of your cannabis oil for myself!!
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