Hello

[Tiggycat1]

I'm new here and so glad I found this resource, finally found a group of people going through the same as me and I instantly identified to a lot of symptoms, day to day living problems and frank discussion about what to expect in the future - so first off thank you all for being here.

I'm not sure when my MSA journey started but I began to have balance issues some 10-12 years ago (I'm 57 now) which were not serious and was put down to cerebral damage caused earlier in my life. In the last 6 years the balance issues became a problem, during this time I went from being able to walk a mile or so down to where I am now, struggle to walk any distance even with a cane, frequent falls etc.....My neurologist could not come up with any other diagnosis until March 2020 when I was diagnosed with Parkinson's, although a little scary I was glad to have something to call what I was feeling happen to my body and mind.

Fast forward to March of this year when a new neurologist was appointed to me and I had a DAT scan. The follow up consultation I was informed that I "was likely" to have MSA and could expect to live 6-10 years on average from diagnosis - "likely to have" seems to be a common term when discussing the condition with medical professionals, never "you do have". I was shocked and going through the usual feelings of being in denial, angry, sad.......and finally acceptance - I have been surprised how fast I reached acceptance and the spiritual peace that I find comes with this.

I live alone and have no family here in the UK to support me, I currently live in private rented accommodation and rely on benefits for income. I really need to be re-housed as there are 5 steps up to my front door and 5 steps inside the flat leading down to the bathroom, a serious accident waiting to happen. Despite a letter to the local housing authority from my GP asking for immediate action I am not seen as a priority, this is causing me great stress as if I fall and hurt myself no-one would miss me for a couple of days. I tried a fall alarm but this would go off 2 or 3 times a day which made it unmanageable. I am desperate to get into sheltered accommodation but cannot seem to progress up the priority list, currently in level 3 of a 1-5 scale. Anyone in a similar position?

Perhaps I should add I was also diagnosed with CLL (Chronic Lymphocytic Leukemia) in March 2020 but thankfully under control at present.

As a first post I was just going to introduce myself but turned out a bit longer than expected!!!

Thank you for reading.

Tigs

[Diane831]

Hi Tigs, and welcome here, although sorry that you have to be here! I expect that if you have been reading the other posts you will probably expect the usual round of, have you joined the MSA Trust

msatrust.org.uk/

You will find helpful information, and get the support of the MSA Nursesas well as Jane Stein who is the welfare officer and she might well be the person to speak to about your housing issue, she can sometimes advocate for you and check that you are getting the help that you need. You might also appreciate the virtual support groups on zoom.

You seem to have already come to terms with the fact that Doctors will only say probable MSA not that it definitely is MSA and so you’re ahead of the curve with that.

I hope this forum gives you some of the support that you need if you haven’t got much other support, there is a Facebook group - MSA UK and Ireland if you use Facebook, another set of understanding friends!

Best wishes, Diane

[Tiggycat1 in reply to Diane831]

Thanks Diane

[chester2107]

welcome Tigs, you seem to have gone through a lot at such a young age , but yes this is a great forum for info and suppprt , as diane said get in touch with the MSA Trust , they have so much info and will help you to get help , a lot of doctors haven’t heard of MSA , you are going to need help , if not now in the future , it’s different for everyone, i hope you get some helpsoon

love elaine

[Tiggycat1 in reply to chester2107]

Thanks Elaine

[Paul_and_Sue_Wood]

Hiwelcome to this support group and sorry that you're here at the same time.

You will find lots of helpful suggestions and you will find everyone's journey is different.

I have and continue to use for support the local neuro or Parkinsons nurses, you are also looking for help from the occupational therapist to assess your risk. Also, chat with social services as your financial resources will need bolstering and if help is needed and it will be in time they can help with this.

With all of the above, you have to keep in touch with them regularly, keep notes, write down your symptoms and medicines. If you have a close friend or relative get them to monitor everything. This is all done to protect you in the future and like everyone says MSA Trust has advisers to help with this.

This forum proves you are not alone and we are all on the same journey just going down different routes.

Good luck and keep in touch.

Paul

[Tiggycat1 in reply to Paul_and_Sue_Wood]

Thanks Paul

[Floosie5uk]

Hi Tigs, sadly welcome to a great group. As my husband’s carer I also joined recently and have found the support, help and advice invaluable here. We’re still trying to get to the ‘probable’ diagnosis but know in our hearts that MSA is what we are dealing with, balance being just one of the major symptoms Martin has. One of the MSA nurses reached out to us soon after we joined the MSA Trust and her help has also been invaluable in moving on conversations with our GP, occupational & physio therapy, social care etc. So definitely join the Trust if you haven’t already. I’m sure they can help escalate your issues too. Good luck 🤞 Sue

[Tiggycat1 in reply to Floosie5uk]

Thanks Sue

[Andrashko]

Welcome to the group no one wants to join, but yet here we are. I care for my husband who was diagnosed with MSA-C in 2018. If nothing else, I find this group helpful because not many in the medical field know how to deal with MSA-C, let alone know what it is. It truly is a blessing to be able to talk to others that are dealing with issues associated with MSA. I live in the US in Colorado. It's a struggle to get help , but hang in there, we are all here for you

[Tiggycat1 in reply to Andrashko]

Thanks Andrashko

[Hellebelle]

Hi Tigs, a very warm welcome to you. You have had some really useful advice. It sounds as as if your accommodation is not ideal for your condition and I agree that the MSA welfare officer, your GP and the Social Services could all be useful to further your case for more suitable accommodation. The Occupational Therapist from Social Services can do an assessment of your accommodation needs and write a report to help support your case. They will be able to take into account your future needs with your condition.

I really hope you are able to get some much needed help. In the meantime, please post to let us know how you are getting on.

Helen x

[Tiggycat1 in reply to Hellebelle]

Thanks Helen

[Hidden]

Sorry to read that. All I can say is that this Forum is full of good advice and support. Sending you good wishes.