Hi, my name is jane — Scope | Disability forum
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Hi, my name is jane

jaknit
jaknit Member Posts: 27 Connected
in brief, suspected mitochondrial disease had number of strokes as result, partially sighted and had to relearn everything after bad attack 5 years ago. the relearning is ongoing currently relearning how to sew.

Comments

  • Tori_Scope
    Tori_Scope Posts: 9,682 Scope online community team
    Hello @jaknit, and welcome to the community! I'm glad you found us and I can see you've already made another post, so it looks like you've been able to find your way around the site. 

    You might also like to visit the Visual and Hearing Impairments category of the community to connect with others who are partially sighted. I'd also recommend having a scroll through the Coffee Lounge, and I'm sure you could find some others who are learning, or relearning, how to sew :)Here is a thread where people post arts and crafts that they've made.

    Have you managed to sew anything recently? I've never been able to do it!

    Tori
    Online Community Coordinator, she/her

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  • janer1967
    janer1967 Member Posts: 16,494 Disability Gamechanger
    Hi there Jane and welcome to the community from another Jane. Glad you have joined us here

    I am also partially sighted and also an amputee but the sight is worse to deal with than losing the leg

    I look forward to seeing you around
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @jaknit

    Good Afternoon it’s great to meet you today.

    I have also had a Stroke at the age of 32.

    Please come back to me if I can help you??

    @steve51
  • jaknit
    jaknit Member Posts: 27 Connected
    thankyou, it is very reassuring to know there are people who understang
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @jaknit - & welcome to the community from me too, Jane. We have another member here with suspected mitochondrial disease - @Ami2301 who I'm sure will come & chat to you when she can. :)
  • atlas47
    atlas47 Member Posts: 238 Pioneering
    Hi @jaknit

    Sorry to learn about your difficulties.

    I am tagging @mikehughescq as he is expert in all matters about VI.

    Hope this helps.

    Stay kind and be safe.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    welcome, I wont say anything else cos I'm just an old winger, lol!

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    Just to add my hello :) Welcome to the community.  Do you have anything nice planned for today?
    Online Community Co-ordinator

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  • amsofly
    amsofly Member Posts: 29 Courageous
    Hi @jaknit welcome to the community, and hope you you find solution to your situations here.
    @amsofly
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    edited August 2020
    Hi @jaknit

    Yes we are all here for you anytime my friend?

    @steve51
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @jaknit and welcome to the community! (Thanks for the tag @chiarieds)

    I have suspected mitochondrial disease too,testing for the disease has been ongoing since March 2018. Some specialists have said that I do have the disease, some are still not sure and want further testing.

    I'm visually impaired, hearing impaired, have Sensory Ataxia and Transverse Myelitis, and a few more but they are my main conditions.

    Like yourself, I had to re-learn everything due to being critically ill in 2018 (doctors are still unsure what led me to being unconscious for nearly 2 days but looking over my medical history, at the time, the quick deterioration in my health led them to suspect mitochondrial disease).

    I had to learn to sit up, stand up, and walk again, and regaining strength and improving my motor skills. I was in hospital and a specialist neurological rehabilitation centre for 9 months. It was hard work and I'm still in recovery. 

    Have you heard of The Lily Foundation? They have a active Facebook group and all the members are very supportive. Mitochondrial disease is rare, but you may find someone with the exact mutation. I'm yet to find anyone who has a faulty SDHB gene like me!

    Always here if you need anything:)
    Disability Gamechanger - 2019
  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    Hello @jaknit a warm welcome to the community.
  • jaknit
    jaknit Member Posts: 27 Connected
    Ami your story sounds very similar to mine. Local neurologist says its not mitochondrial disease, unfortunately i had to get new GP and they have constantly pulled his letter from file. ii recentlygp referred me back to him , his diagnosis was nerve imo[ingement on spinen the end i paid to see a neuroopthamologist got CVI and finally seems penny droppedI have been waiting for nuclear genome testing for over 2 years through newcastle. lily foundation are very good facebook bad-too easy to get confused especially if people pm. lucky i under general medicine still from last admision and consultant is vrty good, not his main area, but he is sympathetic and would not be aswell as i am were it not for him
  • jaknit
    jaknit Member Posts: 27 Connected
    the welcome is fantastic, thankyou everyone
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Welcome to the community @jaknit! What are you wanting to sew? :)
    Scope

  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    I've not been to Newcastle yet in relation to Mitochondrial Disease, I am under the care of specialists at Addenbrooke's, in Cambridge (which isn't that far from me compared to Newcastle). They have been brilliant.

    I'm on a cocktail of medication, many of which are vitamin supplements which have helped. Is Newcastle your local area? I'm just wondering as Addenbrooke's have done the nuclear genome testing with me. If Newcastle isn't local to you then you could check to see if your local hospital does the testing.

    How have you been feeling recently?
    Disability Gamechanger - 2019
  • jaknit
    jaknit Member Posts: 27 Connected
    the test i need was only available through research funding, then NHS agreed to fund test late 2018. the money should have been released in June 2019. researc money no longer there because NHS now fund test. Newcastle are still waiting for NHS  to release the money. NHS Wales very recently began testing but only on children. it is so frustrating. I had polymerise test in 2015 which gave a faint signal for mutation, symptoms classic of MELAS, but not definitive. unfortunately local neurologist disagrees with newcastle and has suggested  rheumatism and most recently nerve impingement on spine- he has never taken history or examined me. he stays out of it now as I am also registered at UCLH, Queeens square, should have gone down for 2 day assessment but Covid scuppered that plan. all i can do is wait, my plan B was to go abroad for testing lol, not lol
  • Ross_Scope
    Ross_Scope Posts: 7,507 Scope online community team
    Hi @jaknit

    I'm sorry to hear that it seems to be a struggle to get the test you need. Hopefully it can be resolved soon, it must be difficult. It's a shame that the pandemic has hindered progress as well, I can only hope that your patience pays off in the end.
    Online Community Coordinator

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  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
     Hi @jaknit

    Good Morning I do hope that you are having a good start to the day ?

    Yes I went through a similar situation in 2006/07/08/09.

    I have had Chronic Pain since 2005.

    Having been given a lot of meds at there max doses.

    My Pain only got “worse than better”

    My only option was “Deep Brain Stimulation”  

    I can’t take any higher doses of medications.

    So I was “Snookered”

    As “DBS” wasn’t routinely used I had to get “Special Funding”

    Following trips from Birmingham to Oxford to Liverpool where I was told yes I am a good candidate for DBS.

    I was constantly refused “Funding” for the “DBS Treatment”

    I’m still awaiting any change in policy for the “DBS Treatment”

    I do hope that you get the test “ASAP”

    Please let me know how things go if you don’t mind????

    @steve51

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