I was diagnosed with MSA in December 2018. I am 62 years old. I had plans for the future.
I had previously just gone through a lot of stress due mostly to life and bad luck.
I thought I had gotten through it and could now start enjoying my life. I got a new job and I really thought that I was strong enough to face anything now.
Then I noticed my balance was getting bad and I had to steady myself when I got out of the car-I was getting dizzy spells when I stood up. I was exercising less and less because I felt weak and uncoordinated. I started gaining weight. I started getting severe muscle spasms (charlie horses) in my legs at night and I remember thinking that my legs were dying. But I didn’t really believe that they were. I attributed it all to post traumatic stress.
Anyway the rest is history Finally I found out what was wrong with me. I started crying and I didn’t stop for three months until the GP gave me some antidepressants. I cope mostly by trying to pretend it isn’t happening. I am single And alone in that respect, I’m scared that I will need someone to look after me.
I live in Canada where no one has ever heard of this disease. There are no local support groups. I feel like I am living in my own nightmare.
Counselling doesn’t help. I’ve tried it and no one knows what to say except “ I’m very sorry for you” and that makes me feel worse.
My critical illness insurance doesn’t recognize the disease so no financial help either.
It’s the first time in my life that I can’t hope things will get better.
Elaine
Written by
Eburt
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Thank you for your post. I live in the UK and I know that things work differently here but I just wanted to welcome you to this very supportive forum. Even though we have differences in how our social and health services work, we have a common thread in that we are either people who have the condition or are people who care for or about those with MSA. My father has MSA and so I cannot profess to know what it is like to have the condition but I have some understanding of the condition and can give some insight into what has helped my father.
The MSA trust has lots of information on their website and we have used this to educate the professionals who have little or no knowledge of the condition. There are also MSA specialist nurses whom you can contact via the website. They might be able to put you in touch with health care specialists in Canada? It is worth asking them.
We have tried very hard to make life as normal as possible for dad and although looking back, we think dad's symptoms started in his 60's he wasn't diagnosed until his early 70s. He is now 81 years old. There have been challenges along the way and dad was prescribed antidepressants once he was diagnosed as the condition itself can make you very depressed and de-motivated.
He lives with my mum and their house has been adapted to make it safer for dad as he had a number of serious falls. He had lots of grab rails fitted, a handle for his side of the bed and a wet room. Their house is level access so he
doesn't have to negotiate steps. This was done partly by ourselves and partly by the occupational therapists from the local authority and the palliative care team from the hospice.
We are in touch with the palliative care team on a regular basis and this has helped provide us with much needed advice.
It sounds as if there is more knowledge here of the condition by the medical profession, than in Canada, but it is still not very well known by the general public. Most people I speak to do not have any knowledge of it. It can make you feel quite isolated and that is why this forum is so valuable.
Dad still gets enjoyment out of life and although the condition has progressed, he had adapted to his circumstances.
I hope this helps, but I am sure you will get other helpful replies. Please keep us up to date with your progress.
Welcome here but as always sorry you have to be here. The first thing I would say is yes, we know you won't 'get well again' but from what I hear you're saying I think you can 'get to a better place'. You, as everyone with this dreaded condition, have been handed a bunch of difficulties that you will need to get through. But life does go on....you either throw in the towel and have a miserable existence or fight it....don't let it win, win some battles yourself.
The first thing Jackie and I did when she received her diagnosis was to make a pact that we would be positive. Easy to say I know but being positive helps in itself. Next get as much information as you can about the condition. Ask questions here; look on line and definitely look at the MSA Trust website and download their very helpful fact sheets. DON'T be depressed by what you read, be INFORMED. Never forget that there are many common issues with MSA but everyone goes along their own route and may or may not suffer the same issues as others.
The MSA Trust will also answer your question by email even if you are out of the UK.
Since we started this community for those affected by MSA 2 years ago it has grown to well over 400 members. They all have something in common with you in that they have been touched by MSA and the difficulties it causes. Please be heartened by that, knowing that there are so many who understand what you go through and are here to help.
Hi Elaine. I came across this group for MSA in Canada the other day. They are joining an alliance with a US charity called Defeat MSA and just saw the post on facebook.
hi elaine , welcome, i am sorry as always to read this, my dad has MSA , so i don’t know how it feels , but my dad was devastated when he got the diagnosis, he was much older at 80 and told there was no cure
we try to get him out when we can , the antidepressants have helped him,
stay on this site as everyone is so helpful and have lots of advice, as do the msa trust
I joined a short while ago and read all he posts but haven't been confident enough to write! I have msa and was diagnosed three years ago. I can relate to what a scarey place you are in at the moment, the condition wont get better but you will get better able to manage and be positive with the knowledge from people on this site and i am addicted to the msa trust who i have to say is fantastic at helping me to understand this rubbish condition.
I am very lucky to live with my daughter and she is my full time carer so i dont have those worries!
I do hope that you get strong enough to face life as it is soon.
I responded to you because this sounds like a plea for help, and I want to give you hope. I have done research on MSA because I believed it would be my eventual diagnosis. It wasn't, but all hope is not lost. I do not believe the dogma that there is no treatment and that we can't improve our functioning. Is there a cure? I don't know. What I do know is that if you do nothing your fate is sealed. Functional Medicine can slow, stop or reverse neurological degeneration, but first you need to know for certain what your diagnosis is.
Different illnesses affect different biological pathways and some overlap each other. There is a mouse model for MSA, it was shown that cannabis is neuroprotective via the endocannabinoid system. The good news is you live in Canada where marijuana is legal medicine. Seek out medicinal practitioners for guidance, they know how to help you.
People with MSA are intolerant of nicotine and non-responsive to dopamine therapy. You can challenge yourself with nicotine and see how your body responds (fight-parkinsons.org/wp-con... If you have a positive response (your symptoms improve) this is very encouraging; one of the pathways in the CNS is nicotinic receptors - nicotine blocks neuron degeneration in this pathway. Caffeine is also neuroprotective, and it helps stimulate bowel movements.
Mucuna prurience is a natural form of dopamine, in this study it was combined with curcumin. Improvement of symptoms is a positive response, this is good news.(mdsabstracts.org/abstract/n...
There is a neurologist in Italy, Dr. Costantini, who has had great success in treating neurodegenerative diseases with high dose Thiamine (B1). It can be challenging to find the right dose, go to HealthUnlocked Parkinson's group, they are very supportive of all people. (ncbi.nlm.nih.gov/pmc/articl...
I strongly suggest you get a second neurological opinion and ask for a Nerve Conduction Study and an EMG. You mentioned muscle spasms, have you noticed fasciculations? If you don't know what this is you can search YouTube. It helps to know what you are looking for. Fasciculations are easy to spot in the tongue because it is pure muscle. Spasms and fasciculations along with muscle atrophy are present in MSA and MND.
Did you have a brain MRI? If not you should request this test. You mention balance problems - MSA manifests with cerebellar ataxia and you can see atrophy on imaging. Loss of proprioception is sensory ataxia (CNS); the test for this is the Romberg sign, again search YouTube so you know what this is. The Romberg test is easy to do on yourself. Close your eyes while standing with your arms at your side, if you sway a lot or lose your balance (people fall when it's advanced), it's positive.
If this is too much information - stop reading now.
A positive Romberg sign rules out MSA. Brisk reflexes (hyperreflexia) rules out MSA. Dementia and cognitive impairment rules out MSA (comorbidities do exist...). Parkinson's Disease was ruled out early for me (hyperreflexia), as was Multiple Sclerosis (clear MRI).
My initial diagnosis was parkinsonism with tremors which isn't specific for MSA. I went to the University of Iowa Neuro-Ophthalmology Department for testing, where MSA was objectively ruled out and a neuromuscular disease specialist was brought in to conduct a clinical examination; I have specific thinning of my retina consistent with ALS-Frontotemporal Dementia (FTD). I now have confirmation of my ALS-Plus diagnosis.
These are horrible illnesses, and I don't know who I am without my intellect; but I believe that knowledge empowers us. Even if your diagnosis is changed, it doesn't change your reality. My hope is that this will give you tools to leverage access to much needed financial, social and emotional support. There are documented reports of recovery from ALS and other neurodegenerative illnesses (clinicaltrials.gov/ct2/show....
Another reason for me writing a response is that I want to raise awareness; too many people are misdiagnosed and miss the opportunity for novel therapy; 22% of people with ALS are diagnosed post mortem at autopsy. This is an appalling statistic. There is overlap in symptoms of neurodegenerative diseases and some co-occurncbi.nlm.nih.gov/pmc/articl... and ncbi.nlm.nih.gov/pubmed/160...; dementia is a common feature of neurological disorders. Classic ALS is a wildfire that is hard to get ahead of, but ALS itself is a multisystem disease with a spectrum of symptoms and varied rate progression.
With MSA and ALS, it seems like doctors aren't motivated to get it right, the only tool in the tool box is palliative care, and most doctors view patient attempts to impact the progression of their illness as futile and not grounded in science. I've immersed myself in published scientific research (NIH/PubMed) - the only reasonable conclusion to be drawn is that neurodegenerative disease originates from over exposure to environmental toxins and the individual ability to detoxify. It's not magic, it's caused and it can be treated.
Elaine, I know right now you feel lost, we all do sometimes. There are good people in this world and angels appear in the most unexpected ways; I wish you all the best.
Hi, how are you?I would like to talk to you if possible. I am a 33 year old girl living in Spain, I have been looking for a diagnosis for more than a year and deteriorating a little more every day. I started with terrible fatigue, then came fasciculations, muscle weakness, dysphagia, uncontrollable crying, loss of coordination in the hands, loss of general muscle mass, weakness in the respiratory muscles ... everything appreciates pointing out that it is ALS .
But in addition to all this, I have pots, serious digestive problems (moderate gastroparesis), problems defecating ...
None of the doctors who have seen me have given me a diagnosis, one of them mentioned ALS plus syndrome, but I immediately discharge it since they said it did not occur in such young people.
I would like to know if some of my symptoms are similar to yours. Do you live in the United States?
on another note , it does annoy me that the insurance company don’t recognise MsA, i know it is rare but is part of the parkinson’s family , it is still a critical illness and should be covered regardless
Issues with Critical Illness insurance cover is something we are currently looking into at the Trust, if you have an personal experiences you would be willing to share with us please get in touch at support@msatrust.org.uk. Thank you
Hi Nicole - Sorry it took so long to get back to you - What can I say -I've appealed they're decision and they just denied me again. Would you like to see some documentation?
I am very sorry to hear this. Yes any information you would be willing to share would be of help to us as we work to understand these decisions and hopefully appeal them. If you could send anything you are happy to share with us to support@msatrust.org.uk
I'm sorry but I don't believe we have received anything from you with regards to the issues you have been having? Did you send them via e-mail or directly to us at the trust.
We are currently investigating these issues our members have been having with Critical Illness cover so any case specific information is greatly appreciated as it helps us build a wider case. However, as this is an ongoing process we cannot make any promises with regards to results.
If the appeal is time sensitive I would recommend you contact our Advocacy Officer Jane Stein directly for advice at jane.stein@msatrust.org.uk
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Finally I found out what was wrong with me. I started crying and I didn’t stop for three months until the GP gave me some antidepressants. I cope mostly by trying to pretend it isn’t happening. I am single And alone in that respect, I’m scared that I will need someone to look after me. 
Since when does MSA have a silent A in its title?
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