Newly diagnosed msa

[thedjsupreme]

Hi I am currently in the process of diagnosis. The neurologist thinks that it is msa.

I am currently looking for help and people to talk to.

[Derkie54]

Hello,

Sorry you've had this news of possible MSA, but welcome to the forum. Plenty of helpful people here who are happy to assist when they can.

Remember we are not medically trained so we're just expressing opinions and relating to past experiences.

Have a look at the MSA Trust it's a great source of information and the staff are very good.

Take care, and if you've any questions or concerns then please ask, I've found this to be a very welcoming forum.

Derek

[thedjsupreme in reply to Derkie54]

HI Derek.I have been in touch with the msa Trust and the staff there are brilliant.

They have helped put us in touch with the practical needs. We'll worth knowing them

[Fatwallet]

So sorry you have had this diagnosis, my husband was diagnosed with msa after originally been told he had Ataxia at your age. The MSA Trust and the lovely people in here are a great support. Take care 😁

[thedjsupreme in reply to Fatwallet]

I wish you had as well. I don't feel so alone with people taking their time out.

[Paul_and_Sue_Wood]

Hi

We are sorry and glad you are here at the same time.

You will find that MSA is a diagnosis by elimination in other words if they can proove its something else its probably MSA and this is done by the symptoms that occur. It is very difficult to do a 100% diagnosis as you need a brain biopsy....

All MSA sufferers have different levels of symptoms and types butr over time a standard set appears.

We say to all plan for the worst and aim at the best.

Ask your questions away and involve all your loved ones in your journey

Paul & Sue

[thedjsupreme in reply to Paul_and_Sue_Wood]

I will. Thank you for the advice. The diagnosis of MSA was done on the first visit to the neurologist after 3 moths of heart tests after complaining of blood pressure, that.was after soldering on with early symptoms from June to March when I went on the sick at work, have since been terminated due to ill health

[Frenchoak]

Hello thedjsupreme 👋, welcome to the group, and you’re at the right place for valuable help, advice, information and support. You are NOT alone! I too have MSA (MSA-C), diagnosed last year - it is a frustrating, stressful and frightening time. I’ll try to tell you some ways I have tried to deal with it in the hope you might take a few ideas that may help you. Get organised & Be in control of things; organise a file for all your medical records and appointments all in one place, keep a diary for appointments, plan in (& stick to!) time for doing things you like to do, plan in exercise time & rest time too! Get another Address Book for keeping contact details of all health professionals who are involved so far; write names, job titles, teams, addresses, tel. no., emails etc, it will save time, energy and frustration for you and your loved ones in the future and you can take it to appointments when asked about others involved! You might want to consider thinking about some ‘life laundry’, sorting through finances, doing LPA’s etc. Contact Sam Fitzgerald at the MSA Trust to go through a benefits check with you (especially if you’re having to give up work or have stopped working, there’s something called ESA, Employment Support Allowance). Be brave and tell everyone; I was trying to’mask’ my problems and difficulties from people, but it’s a relief that others now know what I am dealing with and they can support me better. Educate yourself and others; MSA is such a rare condition, many people don’t know what it means, so it’s down to use to educate others including many health professionals! Information is power! I always carry Trust leaflets with me to hand out to people. Don’t be backwards at being forwards!; ask for referrals to be made for you, chase up referrals, chase up appointments if waiting too long (my referral to NeuroPhysio was made last November, I’ve just had the appointment as the referral “got lost”!), get a dedicated GP on board - you don’t want or need to be explaining it to every GP in the practice! I’ll stop now, as I could go on forever & don’t want to overload you, but I’m happy to answer any other questions or concerns that you may have if you want. Whilst there is lots to do (as well as normal life stuff!), do make time & plans to do nice things, seeing family & friends, hobbies if you can, going on holidays etc. So far this year I’ve managed Tenerife, Cornwall, Wales, Devon, Dorset. & a European River Cruise! Take it steady, all best wishes. 😎😵‍💫

[5456partner in reply to Frenchoak]

Hi Frenchoak,I agree with lots of what you've said and we also have been hugely helped by Sam Fitzgerald of the MSA Trust, we're also very fortunate to have a very supportive GP and specialist. I must say I'm envious of all your holidays, amazing! Glad you got to go on them. But I'm slightly confused, my husband (69) was diagnosed with MSA last Dec - but we'd probably seen symptoms for at least 7 or 8 years prior to that. Unfortunately in the 2 weeks before he was diagnosed my husband deteriorated a lot and we had to install a stairlift, get a wheelchair , rollator and Zimmer frame. He's also been catheterised for a few months prior to the diagnosis. His specialist says he thinks he's been diagnosed fairly early, but it really doesn't feel like it as his lack of mobility has drastically restricted our lives. I've looked into river cruises (don't really fancy a huge cruise

ship, not really us), but river cruises are not as accessible and they don't generally have a Dr on board. We're finding it pretty difficult to find accessible accommodation, but we have lovely friends who we've visited in South Devon a few times and their house is very accessible. We'd love to do more, but everything feels such a challenge and I'm worried we'll end up just staying home as it feels safe. I continually search for accessible holidays, but am finding it very difficult to find much that 'fits'. Any tips gratefully received!

[Frenchoak in reply to 5456partner]

Hi 5456partner 👋 hope you're both doing OK. You're right to say the river cruise ships don't tend to have medical facilities or Drs on board, as they're much smaller than ocean cruise ships, also they can't/don't take wheelchair users unfortunately; due to double-docking alongside other ships at moorings, so you're correct this unfortunately is no longer an option for you both if your husband is now requiring a wheelchair. I'm still walking at the moment, with a stick, & have just been recommended a walker, but there was a H&S requirement to be able to climb steps up to top deck which I found more challenging than I expected! I also had a fall on day 2, necessitating a trip to an Austrian A&E for 6 stitches in my chin! Don't think I'll be able to do another one! I'm with you regards an ocean cruise, too big & noisy! We've managed to get some good self catering flats that have to date, met our requirements, but like you say, in the future we may prefer the "easier option" of staying at home. I've certainly deteriorated in the last year, not walking so well/far, more tired etc, so I'm surprised by how quickly things change too, it's really hard getting your head around this condition and I'm so glad we've got the MSA Trust to help support us all. Take care 🙂

[5456partner in reply to Frenchoak]

Thanks for your friendly reply Frenchoak. It certainly is a lot to adapt to isn't it? We're trying to be thankful for the things we can do and the support we get, but sometimes it's all a bit overwhelming. We're grieving the loss of so much. May I ask how old you are? My husband is 69. I must say we haven't had much of a retirement! Thankfully we moved house just over 2 years ago, not knowing what was ahead, and there's absolutely no way we could have managed in our old house, loads of steps and enormous garden. So glad we're here and I can manage everything, my husband is unable to do anything as his mobility and balance are so bad. Anyway, enough of my moaning! Keep in touch and I hope you still manage to have good days out.

[thedjsupreme in reply to 5456partner]

Hi all. That is what it is about. Enjoying the good

[Frenchoak in reply to 5456partner]

You are so right; so much to adapt to & it is overwhelming. A complete shock and change to our lives and grieving for losses taking place now but within that trying hard to focus on the "here & now" is important as none of us know what's around the corner. I went through the diagnosis process (of elimination of other stuff!) last year 2022, but now I know what they are, realise my symptoms started early 2019 - just as I gave up work early, I'm 59 now, so everything for the future changes. Good thing you're living somewhere more suitable than your last place. We shall be devastated if we have to move as 2021 we spent a huge amount of money, time and effort totally refurbishing our house (before the diagnosis). After the builders left, we were able to adjust our plans for the garden (which my husband was going to do himself over the coming years!). Instead we've paid for landscapers to do it for us, to enjoy now, and have changed steps to slopes instead. I just really hope I can stay here after all the blood, sweat and tears!

[Monkeyfeet1]

So sorry you need to be here. It lookalike you’ve already received lots of practical advice. I was diagnosed at 52 too and, looking back, had symptoms from 49. I received lots of misdiagnoses too. Happy to ‘talk’. X

[thedjsupreme in reply to Monkeyfeet1]

I'd love to. I'd like to hear others experiences

[janecbain]

Hi there everyone.

I too have just received the diagnosis of MSA although they are still not sure! I don't see that it makes a difference other than to prepare myself for what might occur more rapidly than it might have otherwise. I already have experienced rapid decline in aspects of my health and so its confirmation of what I thought anyway. SO I've decided to embrace it and stay as fit as I can for as long as I can. I have moved to the place I always wanted to live and I enjoy the outdoor lifestyle that that affords me. It means that I am on my own away from family but I have made some good friends already and people are only too ready to help me out. My advice would be to allow your diagnosis to give you the time to do those thing you always wanted to do but never prioritised due to work and other commitments. I have found it most puzzling as a disease cos I can run and walk and even paddleboard and yet I fall over in the kitchen just standing still! I can't march on the spot but I can march forwards and sometimes backwards if i concentrate!

I cant speak but I can sing (ish) and i can't swim but I can with a face mask on!

Its all very interesting! Has any one else got an similar stories?

[thedjsupreme in reply to janecbain]

Hi JanecBain. Good to hear a positive story from it. I too have a similar strategy of dog walking every day and have been going to the gym with my walking stick.

You are right it hits people in different ways. Feel free to contact me with your progress., it's good to hear from positive people

[janecbain]

Thanks I will! You too. You are way too young to be suffering like this. Take advantage f the lack f work though it can be a Gods send as long as you are ok financially that is!

[thedjsupreme]

At the moment I am. Who knows what may happen in the future

[Moran666]

Hello,

My husband is in the same position. First recently diagnosed with Parkinson's and this does not

seem to be at all typical, so now there seems a possibility of MSA P. Very difficult as he feels so ill all the time and exhausted by trying to do tasks he used to do without thinking such

as cut the hedge. Seems a process to have a definite diagnosis and it seems the service is on the NHS knees here at the moment. Very long waits and very few specialised nurses.

[thedjsupreme in reply to Moran666]

Sorry to hear that. How long has he had it so far. The first symptoms started in June 2022 for me

[Moran666 in reply to thedjsupreme]

He first had symptoms at the start of the pandemic so mostly ignored with health crisis. Mostly tremors if he was upset about something quite small. Throughout 2022 he told everyone he had long COVID as that covered a multitude of symptoms that he was experiencing. Eventually persuaded him to see a GP. Because of the now very noticeable tremor in his arm he was referred to the PD clinic. Family and friends were very surprised when he did not have a PD diagnosis. He was told to go away and forget about it and have a follow up in 6 months. Because his symptoms became worse GP suggested private consultation with a neurologist with knowledge of PD. So three months later he was then diagnosed with PD and prescribed Sinemet. However this has not been very effective despite increased dose and his symptoms have become worse. PD nurse suggested strongly that he has a lot of symptoms that are red flags for MSA P. This was confirmed by a second nurse and they have urgently referred back to NHS consultant. Urgent being a subjective word we as we are still waiting.

[thedjsupreme in reply to Moran666]

That sounds similar to myself. I used to be a runner and the early symptoms started when I was running so they were ignored then put down to a heart checks for 3 months