It all started in 2013 and continues daily
1# My Mitochondria Day UPDATE July 2019.After more than 6 years of medical problems i finally got a result I THINK UPDATE BELOW
Over 6 years ago i started with red legs muscle pain, (Red legs like I'd been out in the sun) went to GP. Maybe Arthritis try some inflammatory meds . Two weeks later i went back and GP said where's all hair on your legs gone, she'd noticed i'd lost all the hair on my legs ? me uh no idea. more bloods another med come back in two weeks by this time i'd noticed my calf muscles wriggling twitching. by now i couldn't stand walk without chronic pain. told GP this she saw my legs twitching . no idea whats up with you bloods are ok your going to have to go to the hospital.
a month later a went to see a Rheumatologist.
He said it might be arthritis not sure about the twitching. steroid injection come back in three months.
a month later i emailed hospital could they see me asap ill never wait three months pain horrific.
they got me in to see another Rheumo doc.Dr Fawthrop
she was great said this is not arthritis i think you got a muscle problem and im going to send you to see a Neuro Doc who i call Dr Muscles aka Dr Gibson at a Hallamshire hospital. and im going to have many tests done so when you get to see the Dr they will have the results of these tests . it would be tests they would do in the first place so forward thinking got me up to speed on my first visit seeing the Dr Tests already done result there
This lead to Body CT Scans look for rare tumours, bloods, 7 day urine collection, emg nerve tests, etc. i had raised CPK
When i got to see a neurologist he suggested i might have Polymyostits ? Q. whats that.
More tests the meds first i tried was high dose of steroids, to suppress my immune system. Morphone Then after a while because no meds Helped i was told its IBM Inclusion Body Myositis, so i Had IVIG Treatment that didnt help
ended up with MRI, heart scans, Bowel colonoscopy, two EMG nerve tests both wrong 2 muscle biopsies first one showed muscle problem inflammation cox negative fibres ? still waiting on biopsy two result as i write this
so for years I've many odd problems hair loss, muscle twitch, red legs, muscle wasting, scaloping, eye lid droop, falls, choking on small items pea sweetcorn etc, carpel tunnel both wrists, chronic fatigue, chronic pain on using my muscles, severe sweating, when really tired my eye lids wont not open in a morning especially if i have a good nights sleep, i cant walk without pain use crutches wheelchair, bicep thigh pain, low Vitamin D, High BP, Bowel polyps, and more
no meds have ever helped Steroids, IVIG Treatment, regular meds morphine, Gabapentin, amitriptyline, deuloxitine, etc.
about 18 months ago i saw a professor who wanted to know how i started with this condition so we went over the red legs hair loss muscle twitch. etc he said i think you have mitochondrial disease. i want to do your DNA Genes this will take a while bloods were done on this visit
Forward to July 2019 i was called in by my neuro doc the genes dna results are in they found a problem and it went back to my first muscle biopsy a Specialist Muscle DNA centre in Newcastle UK Found the problem Doc said you have MITO the energy power cells need to function normally and mine is low at 15% so my body has no energy power for cells to function properly and all my odd problems can be linked to this mito problem now. the sweating the urinating a lot is happening because my autonomic system isnt working well no power energy for it to work. my muscles hurt because the same they have no power to work
I still have all the problems above and more since i first started with this complaint but i know why now more tests being done now Vitamins, calcium, magnesium, Heart Scans, Heart monitor box, ECG, hydro pool booked
So thats where i am now, I'm being treated as a mito patient as such
UPDATE After my consultant discussed me with other neuro specialists at Sheffield Hallam Uni seminar and a professor wharton has come on board they looking at a very rare odd IBM again. ARGHHHHH - all i know is ive been on settee or bed 24/7 for last 5 yrs+ i cant use my muscles without chronic pain 100% fatigue so lay on settee all day bed all night repeat no meds helps and i take loads
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