If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Hi, my name is jane
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.
Replies
Scope community team
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
Have you managed to sew anything recently? I've never been able to do it!
Tori
Want to give us feedback? Complete our feedback form now.
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
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
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.
TK
Scope community team
Want to tell us about your experience on the online community? Talk to our chatbot and let us know.
@amsofly
Yes we are all here for you anytime my friend😎
@steve51
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:)
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?
Scope community team
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.
Talk to our chatbot and give us feedback on the community.
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