Newbee

[Nairobi1]

Hi Guy’s. I am new to this site, am based in Dublin and am now a member of the MSA Trust which I find very useful. I suppose my MSA journey began about 4 years ago with a diagnosis of Cerebral Ataxia then PPMS then eventually MSA, All in all the diagnosis took about 2 year’s. The doctor’s generally hadn’t a clue about MSA . I eventually found the correct Neurologist. In the last year all has changed. I am only a young 59 .I now have carers, had to give up work, my legs are stiffening by the day, I use a rollator around the house, and the wheelchair outside , providing one of my son’s is around to push me. My voice is practically gone and I have had to move a bed downstairs. My bladder and bowels are all over the place, literally. I get fed up explaining to my friends/guests what MSA actually is, but come to think of it , why should they? Anyway just thought I would say hello, I have no pain and my swallow is fine. For the moment. Hope you will follow my journey. All the best. Nairobi1

[Yanno]

Hello and welcome albeit it's a shame you need to be here. You are lucky to have found the right neurologist, that helps so much. The MSA Trust have an excellent leaflet that explains what MSA is all about, you may find that useful for your friends.

This is a great forum to find out more, keep in touch with others or....just to have a rant now and again!

Do keep posting and welcome again.

Take care, Ian

[Nairobi1 in reply to Yanno]

To IanThanks for getting back to me. I have my Neurologist next Tuesday June 1st. I will let you know how I get on.

All the best

Thanks for the welcome.

Nairobi1

[Helenhooter]

Hi, I've only just been told that it's highly likely that I have MSA. It's taken me 3 years to get this far. I asked the drs months ago if it could be MSA... Their answer, it's very rare 😂!

I use a rollator around the house but it's no good outside as the ground is inevitably bumpy. I'm having all sorts of issues which is extremely frustrating. I used to be constantly active, golf, running, swimming, exercise, so I still try and do something most days even if it has to be modified but that is where it cc an be interesting because you can get inventive 😊!

I have been sleeping downstairs for a couple of months and I'm getting used to it. Welcome to this group 😊

Kind regards

Helen

[Nairobi1 in reply to Helenhooter]

Hi HelenThanks for getting back to me.

I too find the rollator to bumpy outside.

I shall keep you posted!

All the best

Nairobi1

[Diane831]

Hello. Nice to hear from you. Your story is very similar to my husband’s journey although he was about 5 years older than you at diagnosis. Not having pain is a huge blessing. I am glad that you are finding the MSA Trust helpful, Katie Rigg is really helpful and understanding and so knowledgeable. And know that there are people on here who are on, or have been, on a similar journey who are happy to support you in the ups and downs.

Diane

[Nairobi1 in reply to Diane831]

Hi DianeI hope you’re husband is well at the moment.

I also found Katie Rigg very helpful.

Thanks for getting back to me.

All the best

Nairobi1

[Nairobi1 in reply to Diane831]

From Nairobi1. It should read ‘Hi Diane’All the best

Nairobi1

[Diane831]

Sadly Geoff got to The end of his journey 18 months ago. I stay around on the forum and at support group meetings to support those of you still trekking, I was grateful that others understood what we were going through and I heard about tricks and tips that I hadn’t thought about. Diane

[Nairobi1 in reply to Diane831]

Sorry to hear that Diane. Thanks

Nairobi1

[Fortoday]

Hi ditto journey!

[Nairobi1 in reply to Fortoday]

Hi Fortoday Sorry you are on a similar journey, thks for the reply, I reckon I am about 4 years in. I can’t go anywhere without the wheelchair and my voice is well and truly crocked. The deterioration over the last 6 to 12 months has been immense!

All the best

Nairobi1

[Fortoday in reply to Nairobi1]

Totally understand it does move quick I was barely coming to terms with cerebellar ataxia now this do you know of support groups please in North London or in London

[avenger42]

Hi NairobiSorry to reply a bit late.

I am diagnosed 3 yrs and live alone in North Cork.

[Nairobi1 in reply to avenger42]

Hi avenger 42The first thing to remember is that you are not alone.

I found my local ‘Primary Healthcare’ outfit very helpful and opened up a world to me of carers, speech and language ,physio and different types of equipment etc. Or maybe I was just lucky, anyway I would start their.

My carers seem familiar with the condition, much more than some of the doctors you might meet along the way.

I am about 4 years in.

Contact me anytime

All the best

Nairobi1