Understanding potential diagnosis

[Scragger]

So after a sleep study which diagnosed moderate to severe sleep apnea, my wife had her second visit in 5 months with the neurologist. He had previously indicated he was leaning towards MSA, but with reservations. Having had the opportunity to research MSA I was aware of MSA C and MSA P. I was keen today to learn which type the neurologist was leaning towards.

I was surprised when he suggested he was thinking of Shy Drager Syndrome type A. He said there were three types, A, C and P. I thought Shy Drager had been incorporated into either C or P. Am I wrong or is there MSA A? The neurologist said MSA A was the least severe of the three types. I’m a little confused by that because I can’t find any current material that discusses Shy Drager specifically.

On another issue and in answer to my question, the neurologist said my wife would not die from MSA. He said she could die from aspiration or pneumonia or from a fall but not from MSA. Was that a play on words?

We will be seeing another neurologist in April who specialises in movement disorders and MSA. Hopefully he will be able to throw more light on my wife’s condition. The uncertainty with a diagnosis doesn’t make life easy.

Cheers

[FredaE]

a little learning is a dangerous thing especially if you happen to be a consultant

Shy drager has been superceded but used tobe the term for MSA P which is the form which starts with predomminanty lParkinsonian Symptoms and was also called Parkinson plus. The other form starts with predominantly cerebellar and is called MSA C As time passes new symptoms appear to weigh the scales on either side until it becomes clear,for two reasons. 1, the balance can and does change 2 there is no cure and all treatment is to make life better and makes no difference to the out come unlike sepsis or cancer which need treating NOW

NEVER BE TEMPTED BY MIRACLE CURES......there are none

movement specialist sounds better but most people find the MSATrust in London has the best information

Yes silly word games. you have falls and aspiration pneumonia BECAUSE YOU HAVE MULTIPLE SYSTEM ATROPHY AND FOR NO OTHER REASONS..

only use the abreviation among friends --its confusing. Too many diseases with M in the name

.

[thedjsupreme]

I was the same under the impression that shy draper had been reclassified but could be wrong.

[Paul_and_Sue_Wood]

Scragger

I can't help with different diagnosis symptoms but try chatting with Jill at MSA trust one of the nurse team.

The neurologist is primarily correct that MSA deaths are because of infections such as pneumonia, but MSA does make the sufferer much more susceptible to these type of infections. As MSA affect each sufferer differently it is very hard to point a finger at one area of potential threat.

Keeping a close eye on the loved one and reacting quickly to issues is the best way forward.

Paul

[Shooey in reply to Paul_and_Sue_Wood]

Good morning Paul

I’ve been lurking on this site for some time and absorbing information!

My partner, 73 was diagnosed with Parkinsons just over five years ago but has now progressed to Atypical Parkinsons leaning towards MSA due to the symptoms he’s presenting. The jury is still out. Due to appointment cancellations in the NHS we sought a private consult last month to try and get a definitive answer but he said, quite honestly I’m not sure.

I’m aware of MSA Trust and will get in touch at some point if the suspicions are confirmed but don’t want to waste their time at the moment.

One clinician said that you don’t get a definitive diagnosis until postmortem which I thought was a bit brutal!

He’s managing quite well in the house at the moment but we’ll need to make adaptations to the downstairs accommodation eventually I guess.

I’m one of life’s born organisers and feel I need to make a start on preparations for him being far less mobile but don’t want to upset him at this point until we have more information. I don’t however want to be caught napping.

Sorry for rambling on but sometimes just good to get it off your chest.

Best wishes to you both

Shooey

[FredaE in reply to Shooey]

i am afraid that the brutal clinician was telling the truth. The only certain diagnosis is by detecting particles in the brain which can only be done post mortem.

do not be in too much of a rush to be prepared as there is no "progression" and no Typical group of symptoms. MSA is like a blindfold pick'n'mix. you have no idea what symptoms. are in the bag and you dont find out until you close your eyes and pull them out one at a time as the disease progresses

an example would be a stair lift. First it lowers the value of your house and if you get Pisa syndrome where you lose your ability to sit without leaning heavily to one side it will be too dangerous to use anyway,

amass information by all means and resist the temptation to install the spiral staircase you always fancied. Remember that works for the disabled are VAT exempt but must be arranged in advance

[Shooey in reply to FredaE]

Thank you for replying Freda, so it’s just a case of watch and wait really. Also thanks for the tip on the stairlift, fortunately we have a spare downstairs room with loo very close which could be modified if necessary. Noted on the VAT exemption for any works needed, hopefully not for a while yet!

Shooey

[Photo1250 in reply to Shooey]

Also consider assistance from County Council Occupational Therapists for advice, and, indeed funding for adaptations to the house. We have a wet room now for my wife, and in the process of getting a much needed ramp to access home. Without the ramp we'd be stuck using folding wheelchair.

[Shooey in reply to Photo1250]

Thank you Photo1250, good advice!

[Paul_and_Sue_Wood in reply to Shooey]

Shooey

It's worth making contact with MSA trust sooner as they can offer a lot more advice.

Unfortunately MSA is a diagnosis by elimination and the only definitive diagnosis is a brain biopsy....

The site is for ranting.....

Here to listen.

Paul

[Shooey in reply to Paul_and_Sue_Wood]

Thanks Paul, my partner is very much in denial which I can understand but I will make contact with MSA Trust in the first instance.

Shooey

[Whitefeather1]

I was of the understanding that Shy Dragar was the " old " name of Multiple System Atrophy. I agree with the previous two replies, you have aspiration pneumonia because of MSA, which is what my friend has recently passed away with. She was first diagnosed with Parkinson's then A Typical Parkinism, it makes me wonder if this is where the ' A ' in his diagnosis is coming from? ( only my thoughts though!) I had to stop using the MSA abbreviation when dealing with the medical professionals as they mostly always misunderstood her condition.

I really would suggest calling MSA Trust.

Caroline.

[FredaE]

the "A" is medical speak for without or not. Atypical means not typical , aphasia means without speech.....what else have the ancient Greeks done for us besides making it difficult to understand what we can't do? i wish i knew the correct term for without autocorrect..I could do with some of that.

[Ruffner]

I assumed the "A" meant "with prominent autonomic dysfunction." We have been told that the label PD, MSA, etc. is less important than the symptoms. My husband has been diagnosed with MSA but he could also have fast progressing PD with autonomic dysfunction. Shooey, has your partner tried Parkinson's medication and, if so, did it help with symptoms? Can you share a bit more about his symptoms? I agree, the not knowing and waiting for answers is very difficult.

[Shooey in reply to Ruffner]

Hello Ruffner

Yes, he is currently on Parkinsons meds with the dosage being gradually increased over the last 3/4 years. His main symptoms are:

Considerable weight loss

Drenching night sweats 5/6 times a week

Difficulty getting comfortable in bed

Dystonia which he is having Botox injections for

Constipation

Circulation issues affecting extremities

Restricted walking ability, very slow and cautious having suffered a few trips

Shaky down LH side periodically

Emotional sometimes when watching tv

We did have a conversation with the Parky nurse several months ago about either reducing or stopping the specific Parkinsons medication to see what, if any difference it made but were told to leave it a while.

Lacking in confidence to mix socially

Obviously I’ve done a fair amount of googling much of which has been on the MSA Trust website but he doesn’t want me to make approaches on his behalf because he basically doesn’t want to know, which I can fully understand.

I have CLL which is how I know about the HU site as I participate on their forum.

Thanks for listening!!

Shooey

[SamanthaMSAT Moderator Staff]

Hi Scragger,

There are two types of MSA- MSAp which denotes more Parkinson type symptoms and MSAc which denotes more cerebellar symptoms. There used to be 3, which included MSAa = autonomic symptoms, but the criteria states there must be an autonomic dysfunction to get an MSA diagnosis, so we have only used 2 types for many years now. We don't use the term Shy Drager in the UK, although USA still does.

Do get in touch with the MSA Trust for help and advice.

Kind regards,

Samantha. MSAT nurse specialist.

[Scragger in reply to SamanthaMSAT]

Hi Samantha

Thank you for your very clear explanation. I’m sure I’ll be saying in due course that the diagnosis is MSA (as best as the neurologist is able to say). My wife certainly has autonomic dysfunction.

Kind regards

[MrsDoodah]

Hello Scragger Just to add, that unfortunately my husband who had been diagnosed with MSA-c in July 2022, passed away a few weeks ago just before Christmas. He collapsed whilst being transferred into the car and had CPR at the scene. He was taken to hospital but sadly passed away that evening after having extensive tests. They could find no evidence of a stroke/bleed, heart attack, infection, and all tests taken at the time were within normal range.

Following his death the hospital Medical Examiner rang me to say that after much consideration it had been concluded my husband had suffered some kind of vasovagal episode (blood pressure issue) due to his MSA, but they wanted to put cause of death solely as MSA on the death certificate, as this was what caused his death. They said it would also help with statistical/research purposes and bringing MSA to the forefront.

Hopefully you can get a diagnosis for your wife soon, to help you plan for the future as you say you like to do. I understand totally, I was exactly the same and it made things easier for me.

Take care and remember to look after yourself whatever the diagnosis.

Best wishes

Maureen