Liam47

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Viewing 6 posts - 1 through 6 (of 6 total)
  • #159258
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Liam

    I was diagnosed with an MD around age 8. Although symptoms apparent earlier. Finally properly diagnosed with RSMD within the last ten years. Was only with more modern testing could they pin point the SEPN1

    Hi Cat,

    Thank you for the advice and links. I shall check them out and apply for some. I shall check out the Facebook group page and probably join.

    How long have you had RSMD? I was officially diagnosed with it just over 5 years but they think I’ve had it for longer.

    Liam.

    Hi Cat,

    What can you tell me about the RSMD, why did they at the age of 8 think you had MD? What was you like and how are you now? What was the progression of your RSMD?

    Sorry for the straight to the point questions.!

    Thank you,

    Liam.

    Liam47
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    Joined: 13/04/2018
    #159119
    Reply To: Wonky Avatar.!

    I couldn’t take my profile pic lying down, so I’ve deleted my pic :LOL:

    Liam.

    Liam47
    Participant
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    Joined: 13/04/2018
    #159118
    Reply To: South East Care Pathway Co-Ordinator.

    Hello,

    There is unfortunately no South Care Coast care advisor currently. This is something our neuromuscular outreach team are working on with CCG to get roles funded.

    In the mean time I would encourage you to contact one of two places. If you are based at King’s College Hospital for you muscle clinic under either Dr Norwood or Dr Rose then feel free to contact me directly (Joel Rackham) as I work alongside this clinic supporting in a similar way to Pammy and Neeru have done in the past. My email is j.rackham@musculardystrophyuk.org. Should I be unavailable you can follow advice below as well.

    Alternatively if you are in the South East and do not attend this clinic or are in another area without a care advisor I would encourage you to contact our helpline through either 0800 652 6352 or info@musculardystrophyuk.org. We do have an advocacy team who are able to support with various things, and we always try our best to find any information you may need.

    Kind regards,

    Joel

    Hi Joel,

    I’m not based at Kings for a muscle clinic. Although I live in north Kent, most of my care is at Addenbrooke’s Hospital in Cambridge for various health problems, one for which I’m under a neuromuscular disease consultant at Addenbrooke’s. I did see a neuromuscular Physiotherapist at Kings which was the closest neuromuscular physiotherapist in my area.

    But, thank you for your valuable advice and help, I appreciate it and I will keep what you said in mind.!

    Kind Regards,

    Liam.

    Liam47
    Participant
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    Joined: 13/04/2018
    #158910
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Cat,

    Thank you for the advice and links. I shall check them out and apply for some. I shall check out the Facebook group page and probably join.

    How long have you had RSMD? I was officially diagnosed with it just over 5 years but they think I’ve had it for longer.

    Liam.

    Liam47
    Participant
    Posts: 0
    Joined: 13/04/2018
    #158859
    Reply To: South East Care Pathway Co-Ordinator.

    I also have Rigid Spine MD specific fault on SPN1 gene.

    Happy to brainstorm on any issues till you find a care adviser, not all that many of us.

    Hi Catatude,

    Same MD as me (a specific fault on the SPN1 gene). I’d be happy to pick your brain cells on any issues I think of to ask, if that’s ok 😉

    I hope you don’t mind me asking you this, but, what benefits do you claim? The reason I ask is, I’ve had to take ill health early retirement from work for several reasons, but one was because of the RSMD getting worse where I was very ill and I was not so mobile after having major heart surgery in July 2017, I’ll get a small pension from work but it won’t be enough to pay all the bills, so I was wondering what I could claim? Hence the reason I asked the question about care pathway co-ordinator in the south east (Kent).

    Thank you,

    Liam.

    Liam47
    Participant
    Posts: 0
    Joined: 13/04/2018
    #158707
    Reply To: Wonky Avatar.!

    Hi Cat,

    Thank you for the welcome.

    Nope the original picture was taken the right way.

    Liam.

    Liam47
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    Joined: 13/04/2018
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