I have been diagnosed with Cerebella Atrophy but the more I read the more it sounds like MSA.
I cannot walk unaided, I choke a lot, I don’t write anymore, if I throw something away I usually miss making yet another job, my speech is going although I can still be understood, I find it difficult to use a knife and fork, whatever I put on the fork falls off, I can’t fold, change the bed or hang up even on the airer, I spend a lot of time sat down as it’s the only time I feel “normal.”
I live on my own and have two dogs, but life is getting more difficult. Just changing the water is an effort, I have to hold on to the work surface or I’d fall. I have someone walk them every.
If there is anyone out there who can shed some light on my diagnosis it would be much appreciated.
Thank you so much, take care all,
Jacqui
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Hi Jacqui, I am very sorry to hear of your condition. Whatever the diagnosis it is making life very unpleasant and difficult for you. My husbands was initially diagnosed with ataxia caused by cerebellar atrophy, which was then changed to MSA. I think they don’t like to suggest that initially as it is only over time that they are able to make a clinical diagnosis.
I am my husband’s career; I don’t know how he would manage without me. It is obviously so much worse for you, living alone. I would suggest you start thinking of the support you might need in the future and start putting plans in place. We have converted part of our garage to make a bedroom and wet room for him and sorted out low threshold doors and ramps to make getting in and out of the house easier with a scooter or wheelchair as he is losing his mobility.My thoughts are with you. Good luck.
Morning Jacqui, those are all symptoms my husband has, with MSA C, he has me to help him out, so like Annietutt said you should look into getting what help you can. Good luck
Unfortunately for us, all MSA is diagnosed by elimination and all of us get diagnosed with other potentials first. My wife was diagnosed with Ataxia first, then idiopathic sensory polyneuropathy and finally MSA. That journey has so far been about 12 years.
We've been lucky in that the gradual change has been slow and I believe this is down to limiting risk and dealing with each change rapidly to mitigate the risk to health as we've found trauma can cause changes.
We have accepted quickly that we need help and engaged with it, which has limited the changes.
I would strongly suggest getting in touch with social services/council to assess what support is available with carers and volunteers because one day you will have a fall and this could be very very dangerous for you,,, Think about what IF..... Talk to a local hospice as well.
The one thing that we can all say about MSA is unfortunately you do not get better, all you can hope for is limiting the changes.
This forum is here to listen and pass on our experiences so please keep in touch there is a lot of knowledge here.
Hi JacquiI have been diagnosed with cerebellar ataxia because I have atrophy of the cerebellum. I have told my consultant neurologist that I believe that I have MSA. I have been falling over and unable to do daily tasks around the house especially dusting or bed making for over 3 years. It has become a lot worse over the last 6 months. It does sound as if you may have MSA. Get all the help that you can. Good luck. Helen 😘😘😘
I agree with the other commenters, get your support system in place and keep yourself safe from falls, they can be devastating.
I also thought I had MSA, what I have is atypical Motor Neuron Disease, we call it ALS in the US. I was diagnosed 2 years ago. I fell and shattered my ankle in Feb. It has made life more challenging for me and my family. You can't prevent all falls, but you can lower your risk of falling. If you don't already, begin using a walker for stability.
There is considerable overlap in non-genetic neurodegenerative diseases and I believe they share a common cause - exposure to environmental toxins (poison).
I have first hand experience with this - I had a documented poisoning with Roundup and other agricultural chemicals used in a tank mix on soybeans 7 years ago when they drifted and I inhaled the chemicals.
I haven't stopped my ALS, but I have slowed it down and I haven't given up hope for recovery, what the medical community calls a reversal (ref. ALS Untangled, Richard Bedlack, MD).
You aren't alone, but your journey is yours alone. I don't know if you want to try to recover. Not everyone declares war on their illness like I have and I feel compelled to share what I know, this can make me appear insufferable. The husband of a very dear friend of mine has cortical basal degeneration and is at peace with where his journey is taking him, my friend supports her husband's decision. It's hard for us to support each other.
My mother was diagnosed with Parkinson's disease at age 52, she died in 2019 at age 76 and did all she could to have a good quality of life. When I began to develop neurological symptoms after my poisoning I began researching, my mom later said she wished someone had done this for her. I wasn't her care giver, my stepfather was and he refused to consider my point of view. I don't want my family to say after my death that I just refused to try.
The first thing to understand is these neurological "diseases" are traumatic brain injuries and the brain can be healed when given proper support.
I recommend the book the Wahls Protocol by Terry Wahls, MD. She recovered from Multiple Sclerosis - an autoimmune neuromuscular disease related to ALS. As I said earlier, these neurological disorders overlap.
There is a strong relationship between gut health and neurodegenerative disorders. Healing your gut can have a dramatic effect on your MSA symptoms.
You need to improve oxygenation and vitamin supplementation along with nutrition. This is challenging to do on your own when your illness is more advanced and you need to bring family in to help support you.
Autonomic dysfunction is a big part of MSA (and ALS). Dr. DePace in the US is has a lot of information on his website and in YouTube videos.
MSA is a variant of Parkinson's disease. I recomend you join the Cure Parkinson's group in Healthunlocked, they are very active in alternative therapies and nutritional intervention and you can learn a lot from the collective knowledge.
I wish everyone peace, love and understanding on their journey.
I'm so very sorry to hear of your condition. I was finally diagnosed with MSA last year; it was made after a period of observation from the neurologists. I am not an expert but I'd be glad to share my experience - hopefully something may help
"I cannot walk unaided."
2 things caused my imbalance
The first is low blood pressure and orthostatic hypotension (causing severe dizzinesss). I am currently on midodrine (which I had to titrate to a suitable level). Being on bp meds helped immensely. There are other options (flourinef, mestinon and droxidopa etc). However I have to sleep on a tilt bed where my feet is much lower than my head - otherwise my supine bp is very high with the medication.
The second is taking a levodopa. I used to take Mucuna Puriens (a natural herb that contains some levodopa). But just last week my condition deteriorated and I finally agreed to being on a levodopa prescription - Madopar. Not everyone is responsive to it but it seems to work for me and my walking and balance has improved. Taking the medication depends on the neurologist’s detailed evaluation of the physical signs.
"I choke a lot" "my speech is going although I can still be understood"
I do too and but having speech therapy definitely slows the progression. I diligently practice the exercises many times every day and use a thickener with my fluid intake when necessary. The choking is much less now
My speech was barely a whisper but it's also improved to the point where I can be heard in the next room
I also drool excessively but was prescribed atropine drops (off label use) under the tongue (sublingual) – a couple of drops 2-3 times a day really helped.
"I don’t write anymore, if I throw something away I usually miss making yet another job, , I find it difficult to use a knife and fork, whatever I put on the fork falls off, I can’t fold, change the bed or hang up even on the airer,"
I have the same problems but like the above, occupational therapy sessions helps slow the progression. I've accepted the fact that I am very slow and my body just doesn't respond on command.
I spend a lot of time sat down as it’s the only time I feel “normal.”
I was advised to do 'exercise snacks' as I tire easily. I work out on a recumbent bike for about 12mins, rest for an hour. I then work on my OT homework eg 'sit to stand' exercises for another few minutes and rest again. I will practice speech and after a rest, do some hand exercises
I live on my own and have two dogs, but life is getting more difficult. Just changing the water is an effort, I have to hold on to the work surface or I’d fall. I have someone walk them every.
It would be impossible for me to live alone at this point - fall risk is high and activities of daily living is difficult for me. My wife has started rearranging the home and installing things that make movement safer and more accessible
Just to let you know that the company Biohaven will be reporting its findings at the end of September 2021 for the drug Verdiperstat - first ever drug for MSA. Keep a look out if you are curious
There are also research studies underway or being planned for MSA that attempt to slow down the course of the disease. These are worth keeping a lookout for in case there is local enrolment – clinicaltrials.gov
Also, the MSA Coalition website is another useful resources to look at for clinical trial information.
MSA is a beast of a disease but working on the symptoms can improve quality of life. Wishing you all the best, my thoughts are with you
It sounds as if you’re in a worse state than me. I only manage telephone consultations with my neurologist but when asked, I help the students because he takes them and I get a private consultation. I am yet to get a proper diagnosis but feel it’s the next step. I have made a note of the various medications you take, thank you, hopefully they will help. I wish you all the best, take care and once again thank you for all the information. Jacqui
I found these 2 very helpful resources that helped with swallowing and balance - in case you are interested
“Dr. Cecilia Raccagni, a researcher at Innsbruck Medical University, Austria, and colleagues there recently published the paper “Physiotherapy improves motor function in patients with the Parkinson variant of multiple system atrophy: A prospective trial“.
A research grant from the MSA Coalition helped support this trial, the results of which show that “physiotherapy is feasible, safe and improves gait performance in patients with multiple system atrophy”.
Hi Jacqui-A I am not a Neurologist, I can only go on my own experience. I was also diagnosed with Cerebral Ataxia but was eventually diagnosed with MSA. Pretty much the same symptoms. I reckon. You give a good description. I am about 4 years down the road of MSA though l could be wrong. I find the MSA Trust very good with accurate information. Regarding your symptoms, I'm afraid they won't get any better, but you will manage them better. Sorry, you find yourself here. All the best Colombian 1 Sent from my iPhone
Hello Colombian1,thank you for your reply I think I need to get some answers. I have started the ball rolling today but still got no answers. Take care and look after yourself. Jacqui
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