My friend Pat: Patricia has been... - Multiple System A...

Multiple System Atrophy Trust

1,735 members1,381 posts

My friend Pat

Friendofpat profile image
4 Replies

Patricia has been diagnosed with MSA in her mid 50s. Until recently she was still able to get around but had to give up driving. Does anyone know if there are any studies of the effects of the LDN drug on MSA patients? Apparently it is more effective when it is taken with vitamin D supplements.

Written by
Friendofpat profile image
Friendofpat
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Yanno profile image
Yanno

Hello Pat's friend,

My wife Jackie has MSA-C and we were recommended LDN some time ago. We've been unable to find any real evidence of LDN being used with Multiple System Atrophy. Jackie has used the drug for sometime (now on full dosage) and perseveres despite probably not seeing any huge benefit. Her real motivation now is to try and create some evidence that LDN does or doesn't work.

I responded to a post on the PSP forum and you will see my response here. healthunlocked.com/psp/post...

Should you come across any evidence of the use of LDN with Multiple System Atrophy then we would be very interested to hear. Incidentally many people have referred to so called evidence but sadly on investigation it appears to have been used for MS (Multiple Sclerosis) not MSA.

Not good news but hopefully helpful.

Take care, Ian

Friendofpat profile image
Friendofpat in reply to Yanno

LDN seems to work best with autoimmune conditions like MS. MSA is not an autoimmune condition so evidence could be be more difficult to quantify.

sjg15 profile image
sjg15 in reply to Yanno

I'm not sure what LDN is, my mum has atypical parkinsonism/ MSA diagnosed a year ago and has responded well to Madopar which is a Levodopa mixture, the neurology nurse tells me some patients with MSA respond well to Madopar even though it's more usually seen as a parkinsons drug

Friendofpat profile image
Friendofpat in reply to sjg15

Low Dosage Naltrexone (slow release) only available on private prescription at present (UK)

Not what you're looking for?

You may also like...

Lost my Mum

Hi there, sadly I lost my Mum to MSA on 4 January 2018. After being misdiagnosed with Parkinsons...

My Dad and MSA

Hi I've joined this group late.... my dear Dad passed away with what we now believe to be MSA,...

I'm Just A Support Act

Hello All, I am a carer for my wife who has had MSA for about 2 years and apart from hospital...

Eyes

Does anyone know if MSA affects your eyes in any way my left eye is very blood shot I can feel it...

My dad

I have lost my precious dad. At 2pm Friday 31/1/20 my father passed away. Beloved husband, father...