NEWLY DIAGNOSED

[annietap40]

Hello....I am Ann and was diagnosed by a neurologist with MSA two months ago. I am so glad that I have found this group as I have been so confused regarding treatment etc. Now I have learned from you that the only treatment is for individual health problems. I have 16 medical problems. Yes - 16 but they have manifested themselves over the years. In fact my tremor goes back 40 years....what I am at a loss to understand is how I have managed to reach the grand old age of 81 despite having so many different health problems. I am still reasonably active, i.e. use a walker for outside trips, nothing inside. Have osteo arthritis, mainly in spine, copd, diabetes 2, amongst others. Do I wait to be struck down with MSA overnight or will it remain as it is now. To be honest, I thought my ailments were due to old age and not MSA.

Any advice would be very welcoming and glad I have found you

Ann

[Becky46]

Hello Ann,

A big virtual hello 👋.

I live at home with my parents. My Mum has advanced MSA.

It must be a worrying and frightening time for you.

There are some great people here on the forum that are very helpful and supportive.

I could write more, however it's been a tough day and my brain is mash.

Becky

[Paul_and_Sue_Wood]

AnneWelcome and sorry you are here at the same time, we would all prefer to be fit, healthy and visiting loved ones, but sometimes it's not to be.

You will find many different people with many different symptoms of the condition within the forum and lots to try and help with advice.

First port of call is the MSA trust who have medical professionals who educate doctors and nurses about MSA and it's progression.

You will find that MSA is progressive and everyone has a different rate of progression and different symptoms. So my personal advice is plan for the worst, accept help, keep yourself safe, monitor yourself and just accept that things will change all you can hope is that the changes are delayed.

Educate and involve loved ones.

Best string and we are hear to listen and give personal advice.

Paul and Sue

[annietap40 in reply to Paul_and_Sue_Wood]

Thankyou do much for your kind words and support. I have joined MSA trust which as far as advice is concerned, it's a lifeline. Pun not intended.

I have e mailed one of their specialist nurses advising of my many ailments and sure she will contact me soon.

I am widowed. Was married for 56 years so feel very much alone with my imagination running riot.

I have a supportive family who have no knowledge of this illness only knowing "mum's not well". And a Dr who doesn't know best meds to prescribe. My drs are however kind and do their best with a diagnosis they have never had to deal with until I came along.

[Paul_and_Sue_Wood in reply to annietap40]

HiGet some leaflets off the MSA trust and pass them around to family, doctors, nurses and carers.

Write your symptoms down and keep it close as one day you may struggle to communicate in the future.

Look at local carers' support for your daily needs, talk to social services about help.

Tell the family the truth, they may not like it or accept it, but they will be grateful for it.

First educate yourself, its not good listening, but just remember what you hear may not happen, but plan that it may, then if it does its not a surprise.

Join the local hospice, they are always a great help and someone to talk to.

Paul

[annietap40 in reply to Paul_and_Sue_Wood]

Thanks Paul. Lots of good advice which I've taken on board. Right now I'm coping as able to physically get out and about. With walker and for a couple of hours Painful spinal arthritis which is going only in one direction.Good idea to write ailments down and give to family. Felt I didn't want to worry them but you are quite right in what you say.

Thanks again. So very helpful.

[Bruce7]

Wow, Don't let it get you down Just keep Fighting it.

[Hidden]

Welcome to the forum Kx

[TK-67]

My advice would be to educate everyone around you - MSA is rare and everyone is very different so it's very likely your GP won't have come across it or 'your MSA' - you'll soon know more than them! If you have an expert consultant it's more help and worth seeking one out if you don't have one yet. It really is trial and error in respect of drugs and treatment. If you have been on parkinsons meds it is likely that they will stop being as useful and you may experience side effects now - we've found with mum that once we had an expert consultant these were reduced whilst a previous consultant increased them causing all kinds of issues! Everyone is so different though which isn't helpful I know - my key advice would be getting a good team of people around you, learning as much as you can and enjoying every day - just in case. And come back to us with any questions!

[annietap40 in reply to TK-67]

Thanks so much. Pleased I've found this site as had nobody to talk to. I do treat every day as a bonus and make the most of it. I'm a glass half full person, which helps..

[TK-67 in reply to annietap40]

That's good to hear!

[annietap40 in reply to TK-67]

Where would I find an expert consultant..any tips.

[TK-67 in reply to annietap40]

Check with your consultant if they have a specialism in this area. If not ask to be referred. They tend to work in older people's medicine, movement disorders or neurology. Where do you live in the UK? Someone on here may be able to help?

[annietap40 in reply to TK-67]

Hello...I live in West Yorkshire..am phoning neurologist tomorrow to ask results of brain scan I had 2 weeks ago.So will ask her re any specialists in this area...anywhere in fact in Yorks. It's the biggest county in UK. Thanks .....

[annietap40 in reply to TK-67]

tK..thanks for your reply. I'm seeing my neurologist next month and will ask her for any specialists in my area. I live in west yorks..wakefield. about 10miles from leeds and 30 from sheffield.

[annietap40 in reply to annietap40]

Also results of MRI brain scan was brain cells not getting enough oxygen. That's unofficial from my Dr not neurologist.

[Hidden]

Hello Ann. As I understand it, MSA is a different experience for individuals. It sounds to me that you have being doing the right thing all along. I believe that sometimes early intervention does not help in terms of, on top of everything else you are then bound by endless appointments, assessments etc. My Dad wanted to avoid all of that because he couldn't stand the thought of not being able to do what he wanted when he wanted. For him, the thought of having to wait for a carer to arrive, or having to arrange a trip to the GPs was too much commitment for him. He lived his life at home exactly the way he wanted to. My thoughts are with you Ann. Do what you feel you want to do but do have good support around you.

People that champion your decisions and support you according to your wishes are invaluable. My Dad from his hospital bed still calls all the shots. He says 'jump' and I say 'how high?' Sending my good wishes to you.

[annietap40 in reply to Hidden]

Good morning. Your advice certainly has helped. Like your dad, also decided to take what's come ng as no way can I ask drs to treat every ailment I have. I have good support and staying in my home as long as able.I had carers for hubby and they caused me so much stress with every visit. Not turning u on time and it was me who did the caring. The constant interruption did opposite of caring. I lost 3 stone with stress of household being in a state of upside down.do I would never go through that again.

And as you say constant visits to drs. Another upset for us seniors. The main problem I have is depression and will be getting medical advice. I do know it's the fact I have MSA and the apprehension.

Again I do appreciate your advice and info on this nasty condition. Kind regards.

[Hidden in reply to annietap40]

You remain strong. You sound like a trooper. Live your life, enjoy your life, make the most of positive experiences. Early intervention as you have experienced, isn't always helpful. I have the upmost respect for you and your situation. Another thing that my dad taught me with having things done his way. He learned to let go of what he could not control. So he didn't fret if the kitchen wasn't spic and span, he didn't worry if he couldn't hoover up as much as he wanted. He scolded me if I tried to help and I realised that he was right. We focussed on good conversations, putting the world to rights, scoffing down a decent lunch. He wasn't worried about it and neither should I... I wish you every success in having things your way. Be wonderfully single minded. Those around you will hopefully understand. I am such an advocate of this. Regards.

[annietap40 in reply to Hidden]

Thanks somuch for your kind words and support. I would hope to deal with MSA as well as your dad. He is a real trooper and someone to take lessons from. This group is helping me so much. I take notes of all your comments and discuss some of them with my Dr. She admits I'm first patient the practice has and learns from me and via this group. All positive and give dad an MSA hug from me. 😐