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?

15 Replies

oldestnewest
  • 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

  • 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???

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

You may also like...