Pure Autonomic Failure

[Purplegoth]

My partner has a condition called Pure Autonomic Failure which we found out recently only 180 people in the country have. We are hoping to find some support and tips and the MSA trust seems to be the most useful and helpful Trust as there are no dedicated support groups for this condition.

[Yanno]

There’s an article showing the difference between PAF and MSA on Medscape. medscape.com/answers/115458... Quite a lot if medical jargon but also some interesting and positive, for your partner, observations. I hope this helps.

Take care, Ian

[Purplegoth in reply to Yanno]

Thank you so much for your reply. Will investigate further. My partner is under the care of UCHL.

[SarahHes]

My dad’s diagnosis was pure autonomic failure for a while, before it changed to ‘atypical’ Parkinson’s. His autonomic nervous system - blood pressure, digestion - is badly affected - along with problems of movement, balance and weakness associated with Parkinsonian syndromes. It seems to be very difficult to treat… If you are in the UK, there is a specialist autonomic unit at UCL that takes on referrals from consultants - if you don’t already know about them, here’s the link…

uclh.nhs.uk/our-services/fi...

[Purplegoth in reply to SarahHes]

Thank you for your replyMy partner was supposed to have a MRI scan to rule out "Atypical Parkinsons" but as he has a pacemaker fitted and apparently the pacemaker unit is a different manufacturer to the leads an MRI is not possible.

[Purplegoth in reply to Purplegoth]

Also my partner is under University College Hospital London. X

[Helenhooter]

Hi

I think I have CANVAS syndrome which is good it one way (it doesn't affect life expectancy 🤣) but it plays havoc with my autonomic system

H

👍

[Purplegoth in reply to Helenhooter]

Thank you for your reply. I will investigate further.