I had my appointment with my neurologist on Wed 23 .It was an okay meeting with the same diagnosis - cerrabellar syndrome with possible MSA. He wants me to see his colleagues in a couple of months for a second or third opinion.

So further forward really!I don't want to have MSA but it's frustrating not knowing.

I have normal appointment in August. It's a long process but I suppose that is good as it shows it is progressing slowly.

8 Replies

  • Hi😊 So many symptoms can 'overlap' various conditions, it is very frustrating, especially when you're told one thing and then someone hypothesises there could potentionally be something else but you'll have to wait a while to find out 🤔 The main thing to focus on is, you can cope (despite good and bad days) with whatever it is that you're diagnosed with/suspected to have at the moment 🙂 xB

  • I'm coping with all my various symptoms and am really lucky I have a loving husband and family who keep me going but miss my independence and being able to go out when I feel like it. Still that's the breaks!

  • Hello, I feel for you. I live with chronic pain due to Canvas but I am still independent for now, it is progressive and I will get worse. I have to count my blessings. Thank you!

  • I have never heard of CANVAS. Perhaps you might feel like telling me about it. Thanks for your reply.

  • Canvas syndrome is an acronym for cerebellar ataxia neuropathy vestibular areflexia syndrome. It is a combination of three things. Balance and coordination are affected by all three, but the neuropathy is the painful one. It is rare so many people have never heard of it. I practice my PT, fitness walk and do yoga to keep physical as long as I could because it's degenerative and the future looks grim. I usualIy spend many hours during the course of the day on my mat,resting and doing light postures. I see my neurologist in NYC next tues. And have a list of questions.

    My husband does not travel so I asked my son and his wife to drive me around the west coast of Ireland this spring. Now that have something to look forward to. Very important

  • I was told the same thing. This is after being told in 2010 something else. Very confusing. Does MSA develop or was it always MSA? Or CA. I can't seem to get this information.

  • I don't think the 'experts' know as the illnesses are so rare.They are as much in the dark as we are.Only when a new symptom appears are they able to relate it to disease. It's a case of wait and see which is not very helpful. Thanks for your reply. It's good to speak to someone in the same boat. Mina.

  • I have Sporadic Cerebellar Ataxia (diagnosed almost 13 years ago, unknown cause, symptoms 24/7, progressive) and this is what my neurologist has told me about MSA (Multiple Symptom Atrophy). There's two types, MSA-C (Cerebellar) and MSA-P (Parkinsonism). Unclear about the difference. My neurologist always checks my blood pressure, as with MSA it drops dangerously. I lie down and then sit up, so far mine is fine. Also, MSA usually developes in someone with Sporadic Cerebellar Ataxia within five years. That's what I've been told. My best to all..., ;o)

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