Newbie

[Soco74]

Hi, just introducing my self and hoping for some to understand this MSA.

I am a retired Senior Police Crime Scene Manager, aged 74.

Diagnosed with Parkinson's January 2023. Went straight onto Co-Careldopa and have been going down hill ever since. Saw my Neurologist two weeks ago and re-diagnosed as MSA+P.

Have been trying to find out as much as I can about it since, and it does not look good.

Hobbies are Photography, Scale Model Making and Gardening.

[Yanno]

Hello and so sorry you need to be here. The advice I always give is try to be as positive as you can - we know how difficult that can be however it does help.

Secondly, take the time to look at the MSA Trust web site where there’s loads of information. Don’t let that get you down however, everyone’s journey is different and just because a symptom is possible, doesn’t mean you will experience it.

For help with your own circumstances, the MSA Trust specialist nurses, will be very supportive.

With your background you will be used to looking at the evidence and rationally sifting the relevant from the irrelevant. Now is the time to use that skill for your self.

Good luck and take care, Ian

[Soco74 in reply to Yanno]

Thank you Yanno, I've already started reading all the information on site and your response is encouraging Thank you

[Derkie54]

Hello,

Welcome to the forum, there are plenty of people here willing to help answer your questions and share experiences. As Ian said everyone has their own set of symptoms.

My wife was diagnosed with MSA-P in 2016 and we adjust to our new normals as best we can and do as much as we can.

She is not on any medication for MSA, Parkinson meds were tried but they didn't make any difference.

Fortunately the changes have come slowly and I hope they do for you as well.

Take care

Derek

[Soco74 in reply to Derkie54]

Thank you 🫠

[Whitefeather1]

Hello Soco74, sorry you need to be here. I reiterate what's already been said. The MSA Trust nurses are knowledgeable and invaluable. I learnt that everyone with this disease can have the same symptoms at different times or that some may not have all the symptoms. One tip, if you have to go to hospital, use the full terminology of Multiple System Atrophy, as Drs never quite get the abbreviation MSA..

Good luck, Caroline.

Keep up with your hobbies

[Soco74 in reply to Whitefeather1]

Thanks, Caroline, will do, Kind regards.🫠

[Photo1250]

Also sorry you're here. My wife has MSA-P and I reiterate what Whitefeather1 says about hospitals. However I would stress you use the full Multiple System Atrophy with ANYONE you talk to, including GP's, nurses, the general public ..... Because the odds are that they've never heard of it. I went further and printed all the advice sheets for all the professionals (GP, OT, Physio, etc.) and carry it with me when we visit any of these. Especially the hospital admittance one. I've found several of the wonderful health professionals I've met along the way have shown a healthy interest in Adrienne's problems, once alerted. Some, however, have not listened, even when being presented with the evidence in black and white! I find

[Photo1250]

Sorry. Hit wrong key! I find knowledge of MSA is gradually filtering out there. The advice sheets, by the way, were courtesy of the MSA Trust website. Ian

[Soco74 in reply to Photo1250]

Thanks Photo1250, I'll do that and make a Hospitalisation Pack. Kind regards 🫠

[Scragger]

Hi there Soco74

Sorry you have that news. Good luck over the coming months. It would be of interest to me (my wife was considered to be a candidate for MSA-P and then that potential diagnosis was disagreed with by a second Neurologist) if you could advise what caused the change of diagnosis from PD to MSA-P and what are your symptoms.

Kind regards.

[Soco74 in reply to Scragger]

Hi Scragger, The neurologist diagnosed Parkinson's and told me he was putting me on Co-Carledopa and that I would feel so much better. I didn't and just started to get worse. Upsetting as those around me that had Parkinson's were doing better. After a year, he re-examined me and agreed that I had got worse. I asked if I had Parkinson's Plus, he said unfortunately yes, it looks like MSA+P and that's why the Co-Careldopa is not having as much effect as it should. My symptoms are Stiffness and slow movement on the right side arm and leg, a slight tremor in the right hand. Walking gait problems on the right side. Lack of blood pressure control, when I finish eating or exercising my BP goes through the floor, I can feel it coming on, so I will sit or lay down. My BP also goes up into the two hundreds, bringing the fear of a bleed on the brain. So if it gives me a headache, then it's off to A&E. I am also constipated, I had stools labelled as No1 on the Bristol Poo Scale (google it for a laugh) painful, I take laxatives. I am also incontinent and have been fitted with a catheter, this has caused a Urinary Tract Infection (UTI) for which I have just come back from a week in hospital having been taken in by ambulance after waking up with a fever and unable to move. After a course of antibiotics I am now okay, that was the first time for me and I do not want that again. So now having been re-diagnosed as MSA +P I am now waiting for a MRI scan to see if there is any shrinkage to my brain cell. Happy days.

Kind regards