MSA Newbie!

[Gill-C]

Hi everyone,

I was diagnosed with MSA-P last week (had only just got used to the previous Parkinson’s diagnosis!)

At this moment I’m still working (with some adjustments) and need only limited support from my partner. Main issues are dizziness, loss of balance and “coat-hanger” pain.

To be honest, I’m still in shock and a bit of denial about what the future holds and so soon.

If anyone who is going through this journey can offer any supportive thoughts I’d be very grateful. I’m determined to spend my remaining time living as positively as possible.

Many thanks.

Gill (London, England)

[Ruffner]

Hi Gill, We are relatively new here also. My husband was diagnosed in January of this year with MSA-P. He also suffers from dizziness, balance and coat-hanger pain caused by severe NOH. His Parkinson's motor symptoms are mild (score of 25 at last appt.) and he has not been prescribed Parkinson's medications as they can make the NOH worse. He has several other autonomic symptoms (lack of sweating, ED, slow heart rate and nocturia) constipation, depression/anxiety, and mild cognitive impairment. He had REM Behavior Sleep Disorder for the past 20 years or so but the last few years it has decreased considerably and is no longer a problem for him. His progression has been slow as the NOH started about five years ago. My husband could not manage independently and has not driven for a year or more but he can handle most of his daily living skills at home where he spends nearly all of his time with me. I'm sorry about your recent change in diagnosis - are you on PD medication? What changed in your situation to suspect MSA? I have had PD for eleven years and doing well but we have been told to ignore the "label" and continue to stay active and live our lives to the fullest. That is what we are trying to do. Please continue to contribute to the forum as this is such a rare disease and every post is meaning to us. EM

[Gill-C in reply to Ruffner]

Thank you so much for such a full and fast reply and so nice to meet another newbie! The combination of PD and MSA must be so hard for you both. As you said so well, we just have to live our best lives for as long as we can. Part of the reason for revising the diagnosis from PD to MSA (after only 4 months) was my terrible reaction to Co-careldopa Parkinson’s meds, which dropped my already low bp.

Now being trialled on Ropinirole (delivers dopamine in a different way apparently), although I’m not very clear as to how this will improve the MSA symptoms and the Parkinson’s symptoms (tremors etc) really aren’t that bad.

I’m so grateful for all the support.

[Yanno]

Hello Gill, it’s late and so only a quick response, I’m sure others will have more considered things to say. Firstly, well done, well done, well done for being determined to stay positive. You may see early posts from me saying how much we think a positive attitude is a significant weapon against the beast of MSA.

Secondly, if you haven’t yet, please get in touch with the MSA Trust and look at their web site, there’s a host of information there. Never forget everyone’s journey is different and so don’t think you will get every symptom you see on the site.

Finally, if you get a chance, join a local support group as that will be a valuable source of support and advice.

Take care, Ian

[Gill-C in reply to Yanno]

It was so kind of you to reply so fast, Ian. Lovely to check emails this morning and find words of support.

I’m hoping to find a local support group but not yet figured that out, although living in London it surely must be possible!

Really good advice on the not being too scared by every symptom. It can look so overwhelming and it seems to me that this really is a deal with one problem at a time / you don’t need a ticket til the train leaves the platform scenario!

Best wishes

[DemelzaMSAT Moderator Staff in reply to Gill-C]

Hi Gill,

The MSA Trust runs in person and digital support groups, and you would be very welcome to attend these. All of the details are on the website. If you register as a member, one of the nurses will give you a call or email to tell you about all of the services provided, and to offer any support or advice you may need at this time.

msatrust.org.uk/support-for...

Kind regards,

Demelza

[Gill-C in reply to DemelzaMSAT]

Many thanks. I could see the coffee mornings, but I work on that day. Nothing else in the calendar for London as far as I could see. I have joined.

[Paul_and_Sue_Wood]

Gill

Sorry to see you here and also glad you've found us.

You will find that there are many sufferers on this site at various stages of there journey. As Ian says and you will notice everyone's symptoms vary in time type and severity so your journey is individual.

Your attitude so far is superb and acceptance to adapt is a big key. Limiting risk to injury or illness is also key as many find that an incident causes another change in the condition.

Ask away on this site about anything and you will get answers as we are all here to help each other.

Use the MSA trust site as it has lots of useful and scary information.

Good luck

[Gill-C in reply to Paul_and_Sue_Wood]

Thank you so much for taking the time to respond so fast. It’s a scary journey at this stage (and probably every stage!) and it’s lovely to feel supported by people who really know. Good tip on trying to maintain general good health and avoiding injury too - though a challenge when gait and balance are shot 😊

[codymad123]

Hi Gill I am also 63. It is so nice to communicate with someone. I have had autonomic problems for a long time. I believe i had some flaw from birth. 1997 i had severe gut issues (was not making enough pancreatic enzymes, put on creon), followed by severe dry eyes, had tear ducts cauterized 2005, swiftly folloed by drop attacks, legs would get jelly like and have to sit down. I was a medical secretary in histopathology (retired last year), i developed severe head pressure coat hanger pain (always had lots of aching, not the best muscles for years). I had to take many months off work, i saw a good neurologist in Birmingham where i live. He did tilt table test and tested positive for POTS. I was referred to London in 2005 to Professor C Mathias (now retired). Ge put ne on Fludrocortisone which i have been on ever since, i had a very low blood pressure (been on low side all my life.He told ne following tests i did not have MSA then but ut could come in later life. The last 2 years been a bit bumby, so.e swallowing and gait issue's, funny little speech things which come and go not too bad,balance issues. This is a lonely business and i think to have contact with others is vital, and you absolutely have to be positive.

I have 2 children and 5 grandchildren. All very near to me. i have a dig and am hoping to breed some british blue kittens in the bext few months. May i ask what your journey has been like to diagnosis.

Very kind regards Sandra

[Gill-C in reply to codymad123]

Thank you so much for such a lovely full response, Sandra. Interesting what you say as I too, looking back, think that I have had some symptoms for many years.

My diagnosis journey was dramatic, but straightforward. I fell and decked the pavement, breaking my jaw, twice in 5 years - tends to happen if you (a) shuffle and (b) don’t put your hands out to save yourself!

The second time an on the ball Maxfax consultant referred me to the National Hospital for Neurology and Neurosurgery. Started with a PD diagnosis in December 2021 and then revised to MSA after a disastrous response to Co-careldopa (dropping already low bp).

Anyway that’s me! 2 adult children living nearby (no grandchildren yet), partner and 4 cats! Feels really good to be talking to everyone.

Best wishes,

Gill

[Diane831]

What a great attitude, it will certainly serve you well. Do what you can when you can on any given day. This is not an easy journey and yours won't be the same as anyone else's but a positive attitude is always a bonus. Don't forget though, that it's OK to be down about the unfairness occasionally and to rant or shout or cry, and this is a great place for that without upsetting your nearest and dearest.

[Gill-C in reply to Diane831]

Really good advice, Diane and it’s so lovely that you and so many others took the trouble to respond so quickly. Thanks so much.

[Groovyag]

there are trials out there, be positive if you can, I have type c and was diagnosed in june. It is difficult. The more support from family and friends =, the better things are.