Diagnosed Jan 21

[Cubbie]

Hi I was diagnosed in January this with MSA c. Up till then I just collapsing, very dizzy balance was a big problem with me no pains in the feet though.

Lately I have had bad dreams with dark thoughts. Paranoid thoughts of suicide. My current state been unable to walk since January have difficulty trying to sit on the toilet. Booming headaches every now and again. I will be seeing a doctor next week to help me deal with depression.

I was a very active person the all of a sudden I was struck with this horrible disease. My heart goes out to anyone who has this, and it's not easy getting diagnosed

Regards Graham

[Yanno]

Hello Graham, welcome albeit it's a shame that you need to be here.The fact that you have just been diagnosed suggests you may not yet be in touch with the MSA Trust. If you look on their web site there is a host of information about the condition and some of the issues you may face on your journey. You could also have access to a MSA Trust specialist nurse who will be a great support for you.

My wife Jackie, like you, was very active prior to diagnosis and that in some ways makes the condition seem even worse. She suffers from night terrors, often screaming and shouting. Luckily she doesn't remember any of it in the morning. There is medication available which is able to help your terrors and so do talk to your doctor.

I hope you get some answers very soon,

Take care, Ian

[Helenhooter]

Hi Graham, so sorry to hear that you've joined our club. It's not easy but dig in. I find I cannot use the toilet without using my grab rails too. I have found weekly visits to the osteopath have been a tremendous help. We have trainee osteopaths in our local university so I see them for a fraction of the usual charge. I think about different ways to tackle stuff, it may not be conventional, but it works especially with no time frame. Things take forever but I've nothing much else to do! Focus on what you can still do, albeit changed, and try. I'm going swimming as I can't fall once in the water😂. Keep your chin up and keep posting.Best wishes

Helen

😊

[TK-67]

so sorry you've found your way here. As others have said make contact with the MSA Trust - there's a lot of really useful information and support there. My mum too has challenges sleeping - this could be something called REM sleep disorder, there are drugs that can help to manage this, the headaches could be BP related, MSA can make it swing uncontrollably between very low and very high, again there is medication that can help. Having access to a consultant and neuro specialist nurse is very useful too, you will find that you will have to educate a lot of medical professionals, the ongoing challenge of a rare condition that presents differently in everyone sadly, make sure those around you have access to all the info and support too. This group will have seen just about everything between us!