MSA or CA? What's going on?

Recently two neurologists (who work together) told me that I might have developed MSA--which stands for Multiple Systems Atrophy. They aren't sure and sent me to a new specialist who I see in late January 2017. In the meantime my PT told me to ignore them because they don't know. This entire saga has left me rather confused. How does one tell the difference between CA and MSA and does it matter?

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  • Hi Neta. In 2009 I was told by my Neurologist that I may also have MSA or an unrecognised type of Cerebellar Ataxia. In 2011/12 (or there about) I was told that now have a diagnosed title of 'Cerebellar Atrophy' and 'Ataxia' with 'Cerebellar Cognitive Affective Syndrome'. This recent diagnosis is my up-to date known condition. I too feel confused Neta. What does PT stand for Neta? And why do you think your PT told you to ignore the Neurologists. I would think that a Neurologist would be the best person to listen to?

  • Hi Iain

    PT stands for physical therapist. I have written before regarding the differences between PTs and drs. PTs, for instance, believe that the body can find new ways to function and new pathways, neurologists think this is bull and only believe in medication. They send people to PTs out of lack of uno other choices and it can be useful toward alleviating stiffness, a major problem. My PT, an Aussie, says my veneration of dr.s is insane and with hard work and some thought, I can improve somewhat. The jury is still out.

    And there is a third approach. I met this guy Tom, himself a former surgeon and ataxia patient who taught himself to walk unaided. When I met him, a Bri

    itsh guy, had flown over to meet him. He's like a super PT and believes "natural moment" is in our feet but that it requires hard and repetitive work. His own walking is quite amazing a non Ataxian or neurologist would never know. He prefers working with people who are generally optimistic. He has also worked with MSA patients and warns against misdiagnoses which is quite common with ataxia. I have no cognitive damage in my opinion just and its BIG just, mobility impairment.. Be well, N

  • Hi Iain

    PT stands for physical therapist. I have written before regarding the differences between PTs and drs. PTs, for instance, believe that the body can find new ways to function and new pathways, neurologists think this is bull and only believe in medication. They send people to PTs out of lack of uno other choices and it can be useful toward alleviating stiffness, a major problem. My PT, an Aussie, says my veneration of dr.s is insane and with hard work and some thought, I can improve somewhat. The jury is still out.

    And there is a third approach. I met this guy Tom, himself a former surgeon and ataxia patient who taught himself to walk unaided. When I met him, a Bri

    itsh guy, had flown over to meet him. He's like a super PT and believes "natural moment" is in our feet but that it requires hard and repetitive work. His own walking is quite amazing a non Ataxian or neurologist would never know. He prefers working with people who are generally optimistic. He has also worked with MSA patients and warns against misdiagnoses which is quite common with ataxia. I have no cognitive damage in my opinion just and its BIG just, mobility impairment.. Be well, N

  • This is a duplicate. Just ignore. N

  • My partner has msa c it is very progressive and the future for us is not good he can hardly walk he has a cartherter he can only eat with a spoon his bowels are very unprididable umm speech you have to listen carefully he has sleep apnea so he has a c pap machine at night and his blood pressure is so low he collapse s typical msa my home looks like a hospital with gadgets equipment and this disease will only get worse ! So is this how you are ????

  • Dear Phoebe,

    U R a saint for being so cool w it all. I do have bladder issues but sleep like a log. In do have speech issues but try to counter this with reading aloud everyday. My blood pressure is relatively normal --on the low side--always was. I do have some constipation but it can be an aging thing, no? My eating is still normal. Swallowing, issues getting more pronounced. Thanks for sharing. N

  • Dear Neta. Just to compare. My balance is main problem. Tipping, veering off course. Lightheadedness, sleep deeply but have dreams plus even acting them out. Bashed my poor husband twice. Coughing and choking at times. Bowels ok for now. Bladder - Do get up twice and more often at night to the loo. Speech still ok. Swallowing toast sets off coking coughing. So nice to hear from you all.

  • Balance issues. Tipping forward and back. Sleep deeply; no dreams Altho once I had a dream in which I scratched myself.. Despite bladder issues, I do not get up at night. Liquids can make me choke but dry bread too L,N

  • Have you joined msa trust ? We have a specialist nurse on hand now for msa we also see msa consultant Boyd Ghosh or Luke Massey who only deal with msa and Parkinson they are brilliant and my partner hopefully will be going on the research program ? Are you in the uk ?

  • No, I haven't joined anything. I don't even know if I have this or regular CA. How can I find this out? I am not in the UK right now, thanks 4 replying Best, N

  • Hi Phoebe. I am in South Africa and there is nothing equivalent to MSA Trust here. Each medical professional treats whichever symptom is in there sphere. That is why it it is so lonely. It's like being a non-being. I know of only one other person in SA and she in the end stages. I am two years diagnosed. How long has your partner been suffering. So pleased to be in touch with you all.

  • Well 2013 we noticed things 2014 he was told progressive ca so lots of MRI and ct scans bloods you name it he had it ! But then we noticed different things he stopped writing he was peeing a lot speech eyes went funny and he kept falling over he developed what they call Parkinson shuffle and his shoulders have dropped so he stoops forward so now has neck pain this is a classic coat hanger symdrome he has a tremor in his hands and can hardly walk he his awear about the swallowing and choking problem ! But soon we know there will be more changes ? Type in msa trust uk ? And see where it takes you

  • Thanks Phoebe. I notice my erratic balance in 2013. Not degenerating as fast as your partner so far. Have gone into MSA Trust UK. A really great site. I have also watched the videos of the MSA Coalition web site held in October. Lecture on developments.

  • I was first diagnosed with SCA - Spinal Cerebellar Ataxia 18 months ago. A year later changed to MSA - Multiple system Atrophy. Maybe new symptoms had appeared. Could one of the experts explain the difference please. I know that diagnosing MSA is a long process and based on symptoms as they manifest over the years. A patient starts with classification of "possible" then "probable" and finally "definite". The latter only proved after death at postmortem. So many general practitioners have never heard of MSA. It is a very lonely postition to be in as there are few who people you can have a heart to heart talk to. I would stick with the opinions of the neurologists. Remember it is a long process to get to "probable" status. It is a very frightening diagnosis as the prognosis is not good. I feel for you Netta . 😘

  • Dear Pec,

    Its not clear at all that I have this. They have been wrong before,,checking for cancer which I don't have. And I don't quite understand the difference between CA which also advances and MSA. In health, N

  • Neta, Ian and Phoebe we are all in the same boat it seems. Have you tried the MSA Coalition web site for more info?

    I am trying to stay as fit and mobile as I can with some swimming and strength one on one Pilates. I also have joined the local University bio kinetics unit.

    I don't believe new neuron paths can be developed but but strong muscles in the butt and back can at the moment counter the sudden tipping backwards or forwards for now.

    The uncertainty of how MSA progresses and how fast as well is a big worry for me. Phoebe you may be able to tell me the time span on degeneration in your partner. Planning for the future is what I need to know.

  • Nope, I haven't tried the MSA Coalition web site. How does one reach it and how do I know if I have this???

  • Try web site MSA Trust U.K. It's great.

  • hi i know how you feel ive been having tests for years

  • Hi Guyb

    Thanks for your comments. What r they testing for? N

  • hi prof Marios is testing for gluten and some biopsys im not sure about

  • I know of him. He seems quite knowledgeable. I think gluten ataxia is his thing.

  • As I understand MSA it's progressive and as mentioned earlier only proved post mortem I was initially diagnosed with ataxia in Nov 2015 but changed to probable/possible MSA Feb2016 symptoms differ in everyone May I was still walking with walkin stick some falls now I'm onto walker and elec wheelchair can't propel manual! PT concentrates on core which can help with balance! My symptoms are: balance nonexistent walking nearly impossible finished work May retired ill health Nov speech almost incoherent swallowing dodgy bladder controlled but slow, bowel on meds to help can do things myself can't cook carry drinks manual dexterity have to concentrate can't shave elec shaver and toothbrush in process of changing house to suit downstairs toilet bedroom and wet room. Search web MSA for sites MSA Trust is uk. I'm 56!

  • Dear Mick,

    Though your symptoms sound daunting, I don't think its very different from CA. Just perhaps the speed of the decline. Thanks for being frank and sharing. In health, N

  • Hi Mick. Thanks for your info. Yes I like MSA Trust in UK. A lot of information. In health. Liz/Pec

  • Hi Neta, I too have recently been diagnosed with MSA. I was originally diagnosed with Gluten Ataxia but this was upgraded to MSA in April this year. As a result of this latest diagnosis I too have retired (I'm 52) and have a very understanding and supportive boss. I'm not fighting my illness but neither am I giving into it. I know my limitations and refuse belligerently to accept them. I walk with a stick now and have just completed Hadrian's Wall Path which is 85 miles. Next Easter if my health permits, I will walk The Ridgeway which is a similar length. I know I'll fall over a few times but I'm quite used to falling over gracefully. Since retiring, I am learning bookkeeping to keep my mind occupied. Speech is the thing I miss the most but have "Voice Banked" so that when I have to talk through a laptop it will sound like me. Intermittant Self Catheterisation is a faff but gives so you so much of your lif

  • (Sorry, typing is poor and I often hit the wrong keys). Life back. I too have a Parkinson's shuffle and have a permanent ache in my shoulders and poor balance but hey ho, at least I'm still here.

    Waiting for the second MRI result to confirm what I have

  • Dear Coxy123,

    I admire your attitude, I never fall gracefully. Always with a bang and lots of blood. What's the Parkinsons shuffle and why isn't your MSA just CA. 85 miles! That's amazing. i use a frame outside and even that isn't so stable.

    In health N.

    PS What is this? Intermittant Self Catheterisation is a faff

  • Hi Neta, I walk (well shuffle really) constantly with my shoulders drooped, my arms don't swing to give me balance and I have to look only at the path ahead. Looking elsewhere whilst walking is a recipe for disaster.

    Intermittent Self Catheterisation as the name suggests a way of emptying the bladder yourself as and when you need to e.g. before going on a long journey or going to bed at night. Its only a faff because of the stuff you have to carry with you. Its not painful and once you get your head round it is second nature.

    I was diagnosed with having Cerebellar Ataxia before but as I say, this was upgraded to most probably MSA earlier this year

    Andy

  • What stuff? THANX N

  • Cathetres, wipes and disposable bags

  • Hi Coxy. Very impressed with your long hikes. Used to be a long distance runner. So now I must don those Nikes again try and what you do.

  • You're welcome to join if you live in the vicinity next Easter. I too was a runner before this affliction took hold and ran for my local club

  • Neta. Not sure if Neurologists (who specialise in the brain and the nervous system) would agree with your Physical Therapist. I believe that Physiotherapy is essential treatment for those with brain malfunctions. I went through intensive physiotherapy treatment as an in-patient at hospital. The physiotherapy worked to a certain extent which I was very pleased with. However I still have all the balance and inc ordination problems. My own Neurophysiotherapist and also my doctor have told me that although I may improve some mobility through Physiotherapy exercise there is nothing else they can do to reverse my ataxia. Being told by a Physiotherapist to ignore the expertise of a neurologist sounds very condescending. No offence intended Neta. Its just my own opinion. Take care.

  • Dear Iain,

    You are definitely entitled to your opinion. I, like you, am basically a dr. groupie but my Aussie PT does not see them as I do. Not at all. Nor does this Dr. Tom guy see doctors as gods. (And he was a dr). Their attitude is that dr.s can just do so much. And we can, say the PT's, do more.

    The whole thing is very confusing to me.

  • Take your blood pressure sitting and then standing. If it drops, it is MSA. I know someone diagnosed this way.

  • I have heard this and thanks. N

  • Hi phoebe 13' ' I'm 45 with tortecollis / msa -p i was reading yr post and I understand one of yr family members has got coat hanger syndrome ... what treatment do they have for that if any ..?

    Thanku

  • Hi neta, I just was reading yr post I have been told after 5 yrs I have probable msa. P and I have tortecollis with mine in my neck ....!! I just wondered have you found out yet if you have definatley got msa/ca

    Regards

    Joe....

  • Dear Joe45 See my dear all post and thanks for your interest. N

  • Dear ALL,

    The good news is that new neurologist , does not believe I have MSA , a good thing. Nor is she not convinced that what caused my ataxia to begin with is an auto-immune thing. So this puts me (if she's right) in a category of cerebral ataxia of an unknown origin. Great (said sarcastically).

    I think there is a guy at the Mayo Clinic who diagnoses all cases. But they don't accept my insurance and want $7,000 up front from me. In the meantime I am working with Dr. Tom Clouse.

    Tom's abilities continue to amaze me. He can walk unaided for miles. Wow! What I have learned from him so far is that not every bout of dizziness or instability ought to cause fear. These sensations can be fought or contended with. N

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