Difficulty with diagnosis

[Scragger]

Hi there

I’m aware of the difficulty the nuerologist faces in diagnosing MSA. I’m also aware of the many symptoms that contribute towards a diagnosis. My wife has a number of symptoms, sufficient for a neurologist to say he was leaning towards a diagnosis of MSA but would want a second opinion. A second neurologist, experienced with PD and MSA, disagrees, saying his testing and her history did not confirm MSA. In particular he was swayed in his decision by the lack of dizziness and fainting and no blood pressure changes when standing up from a lying position. Also no acting out dreams or aggressive bed behaviour. No evidence of head movement during our appointment (which she has from time to time). Her various test performances were quite satisfactory. Incontinence problems were pre existing and the increase in leakage was not really relevant. Excessive daytime sleeping was due to sleep apnea. (We will invest in a machine to test that theory).

He did not consider Parkinsons Disease an issue from what he had seen or heard. The neurologist said there was no tremor, although we reported head bobbing and involuntary hand movement. I gather there is a difference between tremor and hand movement.

Is anyone able to comment from their experience on the symptoms they had before the likelihood of MSA was identified? Were some symptoms more relevant than others? Is there a minimum of symptoms required before a diagnosis can be made?

Just as a matter of interest I come from a family of familial MND. My sister endured pain and uncertainty and endless medical appointments for over 3 years before she was finally told she had MND, this being even after the familial history was known to the practitioners. Neurologists have a difficult job.

Kind regards

[TK-67]

It is hard, my mum was initially diagnosed in 2012 with parkinsons - she was 'freezing', and her hand writing was affected, but she didn't have a noticeable tremor. Traditional PD drugs did ease her symptoms. Into 2018 she developed severe neck pain and her back and neck began to curve forwards - this was an antecollis - what we weren't told at the time is that this is an MSA symptom. She had botox which had limited impact. The PD drugs stopped working as well, she had increased pain and in 2019 started to fall, probably BP related. She also couldn't regulate her temperature. Eventually she was diagnosed with MSA. She didn't have any bladder issues. It then got worse - she had REM sleep disorder which initially was made far worse by the PD drugs.

It is so hard to diagnose - symptoms can very between individuals. What we did find was important was to find a specialist consultant - the team looking after mum initially said there was nothing they could do to help mum, leaving her in pain - that wasn't the case, we found a specialist who was able to find ways of making things a little easier.

Looking back and knowing what I know now - it was clear for some time that mum did have MSA but the initial treatment wouldn't have been any different.

It may be worth trying to find a specialist with an interest in MSA or fight to keep going to find out if it's not MSA what is it? Or it may be about treating the symptoms which is where we ended up even after diagnosis.

It is hard.

[ReverendBadger]

for me factors point to msa we’re high bladder pvr pd drugs no effect positive dat. Scan. And tremor not like pd

[Jud11]

Hi

My husband is 6/7 years into MSA. He was initially given a Cerebellar Ataxia diagnosis but as time went on and more problems raised their head, a MSA diagnosis was eventually given. (about 2 years after initial diagnosis) He began suffering with urine retention and had to start self catheterising. Sleep disturbance had been an issue for some time, this has now improved greatly when he was diagnosed with severe sleep apnea and given a breathing mask and machine. This has been life changing, my husband used to sleep the day away and snored terribly at night before he had the breathing machine.

Blood pressure problems did not start until 2 years ago, our Neurologist gave his diagnosis before this started to be a problem. My husband did have a brain scan which confirmed his MSA diagnosis.

I agree Neurological conditions are not easy to diagnose but I always had the feeling when I read up about MSA that my husband had unfortunately got it and not Cerebellar Ataxia.

Kind regards

Judith

[Helenhooter]

Hi

I have been over 6 years and I'm still not diagnosed. The latest DAT scan showed no Parkinson's and no MSA. I think I have some form of ataxia which is getting worse. I have cerebellum atrophy, gastroparesis, difficulty swallowing, and speaking to name but a few of the things. I'm convinced that my father and brother had it. Mine came on earlier than my dad's because I had aggressive chemo before a bone marrow transplant and that was over 18 years ago so I still count myself lucky to be here 😂

H

[SRUE]

Hi, my husband's diagnosis was changed to MSA-C from Idiopathic Late OnsetCerebellar Ataxia in Jan this year following a DaT scan. He has speech and balance problems (including quite a few falls) but doesn't have any tremor, doesn't have postural drop when standing. His fine motor skills i.e. writing etc aren't good now. He did have REM sleep disorder which is now managed by Clonazepam.

He doesn't have incontinence issues but does suffer from constipation.

He does get fatigued by the end of the day and then struggles when drinking, he coughs.

It took us almost 4 years of fighting the system to get a diagnosis including paying for a private neurology appointment to get his diagnosis.

The MSA Trust are brilliant, have you been on their website? Lots of info, including for healthcare professionals.

Good luck, keep fighting your corner!

[Photo1250]

In particular he was swayed in his decision by the lack of dizziness and fainting and no blood pressure changes when standing up from a lying position.

Adrienne has never had this, hopefully won't, but was diagnosed as MSA nonetheless.

[esj20]

Hi there

My original symptoms were night terrors, aggressive behaviour in bed and losing the use of my left hand side.

I had CT, MRI and finally DAT scan which showed signs consistent with MSA.,Only after that was I given a working diagnosis of MSA

Yours

Alec