Hello all, having had 12 months of tests, scans and examinations I was referred to another neurologist specialising in neurodegenerative diseases for her opinion, I have just received a copy of the letter she sent to my neurologist. it finishes with this
"a progressive syndrome of cerebellar ataxia, neuropathy, dysautonomia and cognitive impairment, with symptom onset at least 2 1/2 years ago. This time course and syndrome would be consistent with a neurodegenerative disorder, namely multiple system atrophy".
Do you think this means I have MSA?
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Rodjc
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Hello Rodjc, I don't think anyone here or your doctors can say for certain that you have MSA. Your specialist believes that your symptoms and progression are consistent with a diagnosis of MSA. My husband was diagnosed about 15 months ago with probable MSA and we are planning for the worst but hoping she is wrong. Take good care. Ruffner
Hello Ruffner, thank you for the reply, I'm not due to see my neurologist until end of February so the letter is playing on my mind. the uncertainty is so hard to cope with.
Having to wait until February is an excruciating thought. Unacceptable. (Especially because our anxiety is already heightened.)
Now that you have this letter can you contact either doctor for a consultation? Leave a list of questions with their offices and ask for a rapid reply? Inquire about medications you might need etc?
As far as I know that is about as close to an actual diagnosis any of us receive.
It continues to play with my mind. I think about MSA a lot but I respond to each new medical problem as if there is a solution.
HiUnfortunately MSA is a condition that is only diagnosed by eliminating everything else that could cause the symptoms.
Everyone's MSA journey is different and at different rates. It sounds like the neurologist has concluded that it's probable that MSA is the cause. The only true way to prove it is a brain biopsy!
We had a similar diagnosis in 2016.
The next stage is to understand what it is, the dangers, symptoms,likely progression and how to make that journey comfortable and as long as possible.
The MSA trust have a wealth of information and help including nurses specialising in the condition.
The forum is here to help, rant, vent, worry and ask about this condition and you'll find a lot of honest help.
Sorry your here and glad you are too so you can not feel alone.
If the scans showed “hot cross buns” then it is likely you have MSA. The symptoms of MSA include dizziness, fatigue, urinary issues, blood pressure high when lying down and low when standing, slurred speech, difficulty in writing, vivid dreams and talking or shouting etc
You should also be told whether you have MSA-P (Parkinson’s) or MSA-C (cerebella ataxia)
You should definitely speak to the MSA Trust which is an excellent charity for this condition
Hiya I'm iiinn a ssssimilar position only other waayy roouuund. After aalmos ttof 3 years they think it may be pparkkinsoons but things like this typing makes me feel its MSA. I've got all thhe symptoms you list plus more. Consider yourself llluucky we are after all a very select group itss sooo rare.. you'll get loads of help and support on here.. dont let the blooooody beast winn.. smilingthatss tthe best medicinekeepp your chin upSorry about the typing bit I wooont stop.. think of iiit as a new word game!! Thiiinnkiingg of you. . Suex
Uncertainty ! But of course - this is what I was told;
There are over 100 neurological conditions/diseases and the vast majority of them only have a clinical diagnosis i.e. there is no conclusive test. effectively it is a process of matching symptoms to disease and various examinations and tests will eliminate some possibles.By the time you have had umpteeen tests and examinations over several months, or often well over a year, they are scraping the bottom of the barrel for a few rare possibilities or an unusual combination of 2 or more things going on. MSA is one of the rare ones.
The acccuracy of diagnosis of MSA is improving but current measurement of around 85% is taken from post mortem biopsy so for people diagnosed in 2022 I expect the acccuracy to be better than 85% but no one will know till later.
In conclusion you probably do have MSA but you won't get much more than a "possible" or "probable" diagnosis from the neurologist. My own situation illustrates the situation.
I was first diagnosed as "possible MSA in May 2022". I have had several tests and examinations including CAT scan, MRI scan (which were both clear) and am still waiting for a DAT scan. My diagnosis remains "possible MSA". Since May the existing symptoms have deteriorated and new ones appeared, I am seeing several NHS specialists;Neuro physio, neuro OT, Speech and language therapy, bladder and bowel health.
I have been referred to the local hospice,had counselling and attend the hospice weekly. I have had voice banking completed. Rails have been installed in the bathroom and I use adapted cutlery. Last week NHS wheelchair services gave me a trial of a power chair and approved me having one (8-13 week wait to build custom chair).
All this with "just" a "possible MSA" !!
So despite the apparent uncertainity you can see that the things happening for me are based on the reality of existing symptoms and their management, knowledge of MSA and its progressive nature and likely problems.
I recommend joining the MSA Trust and getting NHS referrals to various specialists as soon as you can. I joined the MSA trust within a week of diagnosis but left the issue of speech banking for over 2 months so the final result was not as good as it could have been. If you are worried about the future or things are playing on your mind do consider asking for some counselling. I managed to get a self referral at the hospice which worked for me.
This isn't a journey anyone chooses but there are loads of us here on the same path ready to help fellow travellers so feel free to ask questions or just chat at any time.
Hello Ken, thank you for the reply, sorry to hear of your struggles but very impressed at how much help you are getting, is this through your GP or Neurologist? It may also be a bit late for voice banking as my speech is becoming quite affected so will probably end up with the voice of a sat nav!!
I put my success in building an informal multi discipline team to the following;
1. Not being afraid to "badger" people (see username).
2.Research, Using MSA Trust,internet and family members who work/had worked in NHS.
3.Identifying those specialists who are interested in MSA,keen to help and are willing and able to do referrals outside their area.
4.Being lucky enough to live in a county where the NHS isn't under too much pressure
Most of the help has come from Neuro Physio and Neuro OT. My GP and Neurologist have had a lesser input for referrals !
With respect to voice banking there is a voice repair option on Speech Unique which worked for me but didn't fully restore my Brummie accent. The fully synthetic voice option won't make you sound like a dalek, unless that is what you want. Possibly only of interest to MSA sufferers with bowel problems - *EVACUATE* *EVACUATE* ? A sat nav voice wouldn't be too bad but I think, for MSA, I'd delete the phrase "You have reached your final destination".
BTW MSA Trust will very likely pay for your speech banking if you eventually need it. NHS SALT will set it up first.
If you want to share I'd be interested to know which NHS trust you are under.
as everyone else says , it is very hard to diagnose, it was a couple of years before they told my dad he had multiple system atrophy, which is the name for MSA , he was never diagnosed with anything before , but only had symptoms s couple years before , no other conditions , was a very fit healthy man , diagnosed at 79
My husband has 10 of the 12 you listed. The sweating, in his case, is lack of sweating. His heart rate is very low. So far, he doesn't have swallowing or saliva issues. He is 15 months diagnosed.
thank you🙏🏼 I do have balance difficulties. I wasn’t aware this came under autonomic features.
I have had bowel issues since a surgeon tore my dura ( lining to the spinal cord). So there is a reason for constipation but it sounds like it’s related?
The new criteria does not include all of the above. just Rem slep disorder, urinary retention and blood pressure.
I still haven't got a diagnosis after 4 and a 1/2 years but I am due to have more tests at last. I don't think covid has helped but maybe having a label will? I just think I'm still here . Live each day as best as you can xxx😘
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