I would be very grateful for any help on what to do next.
My partner had been having problems for about 2 years and what diagnosed with PD by a recommended private doctor via a DAT SCAN this doctor also did a MRI scan.
After this she was seen by a NHS PROF doctor twice and he also did a DAT scan and 2 MRI scans he referred us to see a urologist but before seeing a urologist he has diagnosed her with MSA.
My partners symptoms thank god are not bad, she is on a very low dose of one drug and the drug is working very well, her life has not changed at all (just a little stiffness in one arm and every now and then her leg) blood pressure was fine, but she does have an urgency when she needs to ho to the toilet for a wee (but we had kids and she is also going through menopause).
We spoke to the private doctor again and he is still in his opinion very sure she does not have MSA and he said he can hardly tell just looking at her that she has PD.
The NHS doctor who diagnosed her with MSA was very conflicting with his thoughts and I really don’t think he is correct, the NHS prof doctor also offered her to take part in a very evasive new drug trial.
Not sure where or what to do now and thoughts?
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Staffy19
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Unfortunately there's no such thing as a definitive test for MSA yet and getting all the evidence to say one has MSA takes time for most people. My Jackie was thought to have had a stroke before her eventual diagnosis.
I think my question would be 'how will a diagnosis help'. I know it gives some certainty however, I would live life to the full. Do all the things you want to do, be positive, be happy and ignore as much as you can the potential diagnosis.
Things will then take their course and your wife may well develop further issues and have a definite diagnosis of MSA or something else. Whatever comes, good or bad, I'm sure you will never regret spending some special time together.
Thank you very much for time and reply, all make perfect sense thank you.
It just she is really really down at the minute and at the same time, we hope the professor doctor that has diagnosed her is wrong and the private doctor is correct.
Just wondering what is the best advise to give her, should we got privately to urologist that deals with MSA which will be quicker which would further diagnose her or hopefully say he thinks the bladder problem is not neurological etc.
Is it better to live your life as you say to the full or look further at being diagnosed?
I know there is no perfect or clear answer to this but any thoughts would help.
She is really depressed at the minute and I’m not sure if she can or cannot go though this with the doubt I’m the back of her mind is it for sure MSA.
Happy to say that it has not affected her physically much at all yet she is 50.
Agree with Yanno - as usual - there is only one thing to do and that is LIVE as much as you can. You are so lucky that you still can . It really does not matter what you have. there are no cures in neurological diseases, no early stage cures which must not be missed, just treatment for the symptoms which don'tneed a diagnosis. there is a saying that something may be so bad that you cannot make it better but it is never so bad that you cant make it worse You and your wife will find you get the strength to cope and you will be helping her so much if you can encourage her to beleive this. Please dont allow yourseves to waste this precious time chasing after a diagnosis. many of us on here know what it is to have our diagnosis changed several times and it makes it no easier. it is not incompetence or lack of care - it is just theway it is.
Thank you FredaE and everyone a big help in pushing towards the line in working with how my partner is feeling / symptoms as opposed to chasing diagnosis.
Really grateful for everyone help thank you.
My most important job now is to be positive thinking for both of us.
Hi, my wife Adrienne has MSA-P and has various issues. Recently put on Duloxetine at night to counter anxiety/depression and nerve pain. However, the NHS also prescribe it for stress incontinence in women. Don't know if this info may be of use to you, but the bonus is that Adrienne only gets up 1 to 3 times a night to pee, whereas she used to be up nearly every 30-60 minutes overnight.
thank you for your reply my partner is not having any real issues with peeing at night, most night she does not need to get up to pee.
Just not sure on what advise to give her and hoping the private doctor is right and she does not have MSA and the NHS professor who diagnosed her with MSA is wrong.
reading all this good advice makes me want to add a couple more things
Everyone has a different selection of problems, dont look at other peoples symptoms and expect to get them .My husband had no pain at all for example
contact the MSA trust in London for reliable information. (always use the full name multiple atrophy trust never the initials)
when you are at the start of this journey you are vulnerable to the sort of unmentionable subhuman scum who promise you a cure in return for money. Don't .Its not true however plausible it sounds. If and when there is a cure everyone will know about it
Morning, sorry for the delayed reply. R was diagnosed with Parkinson’s or Parkinson’s Plus nearly 2 years ago. The consultant said at the time that it is a waiting game to see what variety he has. At the time I was really angry with this attitude but actually, he was right. The more I look at it is like this, is what you are seeing typical for a Parkinson’s Disease and how have things progressed. R has been on wee tablets for years now but it is hard to tell whether that is linked or not. Ultimately, time will tell.
My wife was originally diagnosed with spinocerebellar ataxia and 2 years later in 10 minutes was diagnosed with MSA-C by the brilliant Professor Hadjivassiliou of Sheffield Hallamshire hospital.
She had urinary urgency and retention for 10 years prior to this (and put this down to child bearing) and took numerous drugs and had botox which did not help. She is now on an indwelling catheter which works very well for her.
Prof H looked at the other symptoms i.e. exhaustion, balance issues, dizziness, slurred speech, poor writing and manipulation, shouting in her dreams, high and low BP, difficulty in eating and drinking, eyesight reduced, using a rollator to walk etc and then came to the conclusion she had MSA-C. This was confirmed when she had a special spectrographic scan at the hospital where they saw "hot cross buns' in a part of her brain.
It is impossible to give a firm diagnosis until the person dies and agrees for their brain to be donated
This is a horrible disease with no known cause or cure.
I wish you all the best, you will need to be very strong to support your partner
"Not sure what to do " was one of your comments and that's what we thought many years ago.
My wife has MSA and things have changed slowly over the years with us having to get used to our new normal from time to time.
In the early days we were very stressed with it all and a diagnosis of MS was later changed to PD and then MSA in 2016. Fast forward to 2023 and we don't mind what label they put on it now, we just deal with it as best we can and enjoy what we can.
About 5 weeks ago my wife had a stroke, she should be out of hospital soon and will have a bed in the lounge and a hoist for transfer to a chair. We won't be able to do a lot, but we're not beaten yet.
I'm sorry your wife is so down, it's understandable and affects my wife as well, but we can only support them where we can and try to make life better.
I'm sure you are doing your best Staffy, you really can't do any more than that.
Thank you very much for your reply and time and really sorry to hear the news 5 weeks ago I need to be more like you and will be for my partner.
I just find it hard to get my head around my partner having MSA given her symptoms are so so mild at the minute - mild tremor down left leg and arm, are the only real obvious symptoms.
For her she is of course so scared and it’s like a ticking time bomb, I just can’t imagine my beautiful partner being in pain and having to deal with what MSA brings.
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I need to be more like you and will be for my partner.
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