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Home Forums Living with MSA genes

This topic contains 5 replies, has 4 voices, and was last updated by Avatar Hereticus 7 months ago. This post has been viewed 238 times

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #14140
    Avatar
    croper
    Participant

    Hi my name is Chris I was diagnosed with MSA in July I have been taking sastravi & clonazepam for six months on my last visit to my consultant in December he asked me to have a gene test can you tell me if anyone else has been asked to have this test he also asked me to see another consultant. I get very frustrated has it seems they are playing pass the parcel I have been seeing consultants for four years only in July I was told I had probable msa. Is there anyone out there having the same problems. Regards Chris

    #14153
    Avatar
    peterhamer
    Participant

    HI Chris

    I am sorry to hear about your frustrations but i suspect they be a common experience. We’ve not had any request for gene testing but i remember in the early days Gill was passed from expert to expert without any real benefit.
    Many people have been diagnosed late in the journey because it is so uncommon and can easily be mistaken for other conditions, typically Parkinson’s or Autonomic Neuropathy
    If you have not already spoken with the MSA support nurses i would strongly suggest you do. They can share a lot of experience with you and perhaps some guidance on how you can get more support and advice.
    good luck in 2019 and i hope you find helpful support from the system

    regards
    Peter

    #14160
    Avatar
    croper
    Participant

    hi peter thank you for your reply I have spoken to nurses on a couple of Times and they were very helpful good luck to you and your partner in 2019 regards Chris

    #14436
    Avatar
    pcolunio
    Participant

    My husband has MSA-C.
    Three year ago he started showing signs of something wrong. It was his voice. Saw his gp and was sent to one specialist after another to rule out many things. The gp then sent him Rochester ny. Strong Hospital. They are wonderful!!!!!!!!!!!! he was told parkinsonism first. But the med were not really helping. They sent for another MRI. Dr at The Strong Hospital went over the MRI cd with us. He showed us the “hot cross buns” in my husbands brain. The Dr. ‘s name is Barbano. If you can get to him do so! The hospital specializes in movement disorders.

    I wish you the best.

    #14440
    Avatar
    croper
    Participant

    Hi thank you for your reply, I have been referred to A movement disorder specialist just waiting for an appointment
    I wish you the best regards Chris

    #14446
    Avatar
    Hereticus
    Participant

    Hi

    In case you don’t know, “probable MSA” is the highest likelihood diagnosis they can give. Anything higher requires a brain autopsy.

    Expect to see a ton of consultants, including multiple neurologists as well as specific ones for different body bits. My critical advice here is to make sure you know who has the lead and make sure they all know. I had a tricky time at the start when they each assumed someone else was making the calls.

    As for gene testing, this is unlikely to help you directly. But its a really good as this, questionnaires and other research materials help them identify defective areas and possible cures. As there is little funding for MSA and limited data (as its rare) they need all the help & support they can get!

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