Not sure if I am eligible join your elite group

Dear all,

I was very pleased to find this forum. I have been suffering from a general feeling of drunkenness (but not the pleasant kind) for about 3 years. My right eye is not cooperating with my left, so I often rock the Marty Feldman look, giving me double vision. I am a slow waddler most of the time and the buzzy swimming feeling in my head makes me fractious and non-productive. At 56, I am not ready for the poverty of early retirement, and my 3 kids require financing through 1 x college, 1 x uni and 1 x self employed in the creative arts. As a man of a certain age, I also collect photography gear. I cannot say my hobby is photography, because that probably only needs one camera…

So, staying employed is my preferred choice. But, it is getting increasingly difficult. My company is very supportive, but I do not like delivering poor value for money.

Oh yes, the neck and shoulder pain requires no male exaggeration, and if I need to pee, there better be a loo close by.

My neurologist (makes it sound as if I own him - reality is I can only see him when the NHS planets are aligned) is ‘moving towards’ a diagnosis of MSA. The MRI with contrast suggests this - appearance of reduction in the cerebellum - I think I have their first album somewhere.

As MSA is not popular, Dr Google is not coming up with the goods for me. Obviously, as an un-trained bloke with more knowledge of washing machine programming than neurology, I still have doubts over my not-yet-set-in-stone diagnosis. That is not to say I am blinkered to an unfavourable diagnosis. I have obviously got something nasty and life limiting. But, I want to confidently look it in the eye (preferably my more disciplined left eye) and know how best to mitigate symptoms and prepare.

So, why am I doubting the well trained, smart neurologist? I have fleeting moments when symptoms subside. When I am lying down, I feel good. Yesterday, I spent the morning unable to really do anything - my head was swimming, my movements slow and awkward and my left knee continually buckled under my weight (admittedly, a shire horse may also struggle to hold me). Then around 11:30 it is though pressure was being lifted. For 2 hours I feel like my old self. I drifted into a gradual decline again after that. After a hot bath, wow, I feel like I have had a pub session with Oliver Reed.

My question is, do others also feel they are on the rollercoaster of symptoms? Do you have moments of strength and clarity within the relentless grind of sh!ttiness?

I feel only someone living with MSA, or caring for someone with MSA can answer this question with any level of certainty.

[Hidden]

Forgot to mention, my blood pressure is relatively unchanged sitting or standing.

[FredaE]

Welcome to the group no one wants to join

whether you have MSA or not is not important, as the treatment is not a matter of urgency like cancer. Also the treatment is not yet a cure but a matter of dealing with symtoms. This not knowing is one of the nasty things about the disease.

Dr google is marvellous if you know how to use him and you ignore anyone who offers you a cure ,however plausible their line of " Doctors dont want you to know this". They just want your money and there is a special place in hell reserved for scum like them.

Always use the full name of multi system atrophy on line or with people who dont know as there are loads of diseases with similar initials and people tend to seize on the most familiar

your first port of call should be the MSATrust (MSAT ) which has everything you need in the way of reliable information and advice. generally speaking the lovely MSAT nurses will be more help than your consultant

Talking of advice.. i found the following useful

there is nothing so bad you cant make it even worse...but you know that already

Never take no for an answer but say it nicely.

make memories and do it now. after all you can do it again if you still can but if you put it off until the conditions just right you may miss the chance

means tested services ..make sure you know which years "means"will be taken into account. You can make the mistake of retiring too late

works and equipment should be vat exempt but arrange it before hand

[Hidden in reply to FredaE]

Thanks FredaE, good advice. I appreciate you replying so quickly and with such detail. I am not the kind of person to be swayed by online evangelists. My job has taught me to be analytical, and to solve complex problems with verified data. That is why I ask others with MSA whether they have similar short periods of relief/remission. If I am losing brain cells, I assume the effect is more predictable. Neuroplasticity requires more time to have such a positive impact, and, I presume, would have a more lasting effect.

I will follow your advice and try the MSATrust. Like Johnny 5 in Short Circuit, I need input. There may not be a need for urgency, but my nature seeks clarity. The past couple of years has been a series of appointments where various professionals proclaim my oddities and how I don’t fit with their usual expectations of behaviour. I get enough of that commentary from the family…

[Gill-C]

Short answer is yes. MSA is full of surprises and ups and downs! I too had the odd days of near normality in the beginning, although I can barely remember them now! We are here throughout your journey. Good luck!

[Hidden]

Thanks Gill, expect the unexpected then. It’s like Peter Sellers waiting for Cato to pounce.

[thedjsupreme]

Have you had a diagnosis yet? My experience of msa the symptoms started quickly in the beginning. I'm now 18 months in and on a clinical trial while fire fighting it. If what you do have is msa then I would be surprised if you can carry on working for long

[Hidden in reply to thedjsupreme]

Thanks thedjsupreme, I do not have a definitive diagnosis, but reading this forum suggests getting one is as rare as a Wonka golden ticket. Symptoms started with a vengeance February 2021, but I had 2 unexplained falls (unless clumsy git is an explanation) previously. I had also had an issue with lack of eye stabilisation for a while. I put it down to needing glasses…

[thedjsupreme in reply to Hidden]

Hi Peter 134. You are right the chances of getting msa are is half as much as winning the lottery (I know which one I'd rather have). Plus once the symptoms start coming through they tend to progress quickly.Worth a neurologist appointment though.

[Hidden in reply to thedjsupreme]

Thanks, I am waiting for the next round of test referrals, with a neurology follow up after seeing the neurologist last week. He has also referred me to the Bristol Eye Hospital for possible prism glasses to counter the double vision. Can’t wait.

[thedjsupreme in reply to Hidden]

Good luck mate

[Paul_and_Sue_Wood]

Hi

If eventually you get the diagnosis of MSA then sorry, but welcome to a lively group that are practical, pragmatic and optimistic.

MSA is a condition diagnosed by elimination and can take years to be confirmed this is because everyones symptoms are different in timings severity and onset, but eventually they become similar.

We always say it's about adaption and help so you can enjoy life and above all speak to family and friends so everyone is aware of what the future may or may not hold.

My sues condition started near 15 years ago and she still enjoys life and Marks and Spencers!

Speak to MSA trust and ask or moan on here.

Paul

[Hidden in reply to Paul_and_Sue_Wood]

Thanks Paul, I am not sure I can cope with the heady excitement of M&S in my condition, Sue must be made of stronger stuff than me. Actually, I often find shops, particularly supermarkets, very challenging. I think it is the combination of lighting and visual complexity. My right eye often struggles to make sense of it. My left eye is a lot more relaxed about the situation.

[thedjsupreme in reply to Paul_and_Sue_Wood]

What is her secret?

[Paul_and_Sue_Wood in reply to thedjsupreme]

She has me!!!!!

She understands and accepts her condition is what it is and changes so we adapt and carry on.

That's probably the biggest thing.

Paul

[thedjsupreme in reply to Paul_and_Sue_Wood]

True. I'm still learning

[Helenhooter]

Hi

Keep trucking. I am still waiting for a diagnosis and it looks more like I have CANVAS rather than MSA. I found the MSA trust invaluable. I have been unwell and getting progressively worse for over 6 years but CANVAS is not life limiting. Make sure you get PIP before you are pensionable age. Good luck with everything

Regards

H

☺️

[Hidden in reply to Helenhooter]

Thanks Helenhooter,

It is fortunate these illnesses often form easily memorable words. CANVAS at least has an artistic connotation. MSA sounds like a secret government organisation.

PIP is on my wife’s hit list. She has already applied for a Blue Badge. She is far more focused than I. We are both pragmatic, but I mix it with procrastination and a touch of flippancy.

[Helenhooter in reply to Hidden]

Prism glasses helped me and I don't get such bad migraines but I have two pairs one with transient lenses (reactive to sunlight) so if I fall and break a pair I am not stuck. But unfortunately I have to wear my other glasses too for reading 😂. Other tips available 😂Cheers

H

☺️

[Hidden in reply to Helenhooter]

Thanks Helen, I used to have excellent eyesight. It used to be a big fear of mine that I might one day find myself in need of glasses. Now, normal glasses are not enough for me. But, we humans adapt quickly, thankfully. I am ready to face whatever comes. I am trying to gather up the spirit of Douglas Bader, interestingly portrayed by Kenneth More, an agent of the secret MSA society.

[Hidden]

Thanks Baxter3, I do think the carer has a tougher time than the patient. The combination of caring and battling to get the support you are entitled to is an exhausting combination.

Like most patients, there is a sense of not wanting to be a burden, not wanting to be resented for effectively stealing a loved one’s life. Being ill seems selfish somehow.

You are amazing.

[Ruffner in reply to Hidden]

You may have the start of Parkinson's disease - time will tell. In the mean time, exercise and take care of your body. If you think you have MSA, your mind might work against you so push on with the attitude that you don't. It will become obvious in the next year or two.

[Hidden in reply to Ruffner]

Thanks Ruffner, you are right. The barrier to exercise is mental. I used to be a keen walker, and known to enjoy being out in the mountains. Having completed the 3 Peaks (both the Ben Nevis and Yorkshire variety), it’s frustrating that the most energetic thing I have done the past fortnight is a brisk waddle from the rarity of finding a free parking space at the hospital to my appointment. I have adjusted my diet, next target is fitness. Your advice is greatly appreciated.

[FredaE in reply to Hidden]

one big problem for carers is not being able to DO anything to make it better.

Please, look at needing help as giving us the chance to do SOMETHING and help a bit

[esj20]

Hi Peter

I’m sorry you’ve found your way here but again glad you have navigated to this group,

FEDA conserved it all along with the other replies so , welcome and I wish you well on this bugger if a journey. My only tip is that always keep your sense of humour.

[Hidden in reply to esj20]

Thanks esj20, I am rarely seen without a smile on my face, like a baby with wind.

[esj20]

Hi Peter

I’m sorry you’ve found your way here but again glad you have navigated to this group,

FEDA conserved it all along with the other replies so , welcome and I wish you well on this bugger if a journey. My only tip is that always keep your sense of humour.