Hi, my name is jane
jaknit
Online Community Member Posts: 31 Contributor
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.
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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
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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 around0 -
thankyou, it is very reassuring to know there are people who understang2
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Hi @jaknit
Sorry to learn about your difficulties.
I am tagging @Username_removed as he is expert in all matters about VI.
Hope this helps.
Stay kind and be safe.0 -
welcome, I wont say anything else cos I'm just an old winger, lol!
TK0 -
Just to add my hello Welcome to the community. Do you have anything nice planned for today? 0
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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:)3 -
Hello @jaknit a warm welcome to the community.0
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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 him0
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the welcome is fantastic, thankyou everyone1
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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?0 -
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 lol0
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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.0 -
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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