#14 IT CONTINUES

 Docs still looking at me as a very rare odd IBM condition, Docs not seen anyone like me i'm showing so many problems that seem IBM and Mito Mitochondrial related, no meds have ever helped steroids IVIG Treatment all EMG Tests are wrong high CPK.muscles twitch, muscle loss, hair loss, choking, chronic fatigue, carpel tunnel, 0 energy, cant walk, teeth fall out, under dentist she never seen anyone with this problem i might get sent to a periodontal specialist, sweat on any exertion urinate a LOT. Eye lid droop, cramp in all fingers cramp in legs you name a problem i got it. 

MY GENES  Genetics Mitochondria, my first muscle biopsy 2014 has been looked at again and Newcastle specialist muscle centre say mito so gene screening was done no single isolated mutation was found so is it mito or is it IBM ? All i know is how rotten i feel 24/7 docs think im showing as having both conditions. a one off in the whole world. seeing what a Professor Wharton Sheffield Uni and Hospitals can come up with now

PINNED #1 My Mito Day July 2019

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 

#13 Mito Phone Consultancy

 Neuro team contacted me for a phone appointment  not been seen for 15 months no face to face appointment got so many questions to ask. so many problems mainly de-hydration with the sweating and urinating then pain fatigue and 0 ZERO Energy 

# 12 Can't Hydrate sweating urinating too much

Been sweating and urinating way too much for a long time now and i mean years drink loads daily but keeping up with fluid out v fluid in is impossible now, feel really light headed when standing up the pain and fatigue is beyond a joke

will get in the doctors sometime this week i hope i can urinate 6-8 full bladders a day then im sweating way too much as well. Doctors have done lots of tests sugar ok etc

looking at my history symptoms over the years Doctors are pretty sure its a Autonomic problem linked to mito. i had full bloods done around xmas tme all ok, a thing i worry about is my kidneys must be working overtime with all this urine im passing.

i have wifes sugar test kit and when im having a really bad day i test my sugar its always around 5.5 to 5.7

normal i also do fastig tests again still normal.

with the covid 19 lockdown ive not been any where much for 14 weeks now this is showing up with muscle loss around my calks shins etc 

got raging headaches this weekend ? dehydration i bet 

shins claf muscle loss + chronic musle pain the joys of mitochondrial disease 

#11 Mito Dehydration

following up with the GP Surgery over sweating more often ive increased fluid intake even more meaning more use of the toilet killing my legs walking. GP worried over kidney stones ive had a querly over blood in urine the urine test was ok clear now starting with more headaches too what acrazy conditon and i have so many problems not just one or too its a doxen or more bloody mito.

#10 Feeling Sick - now Vomit motion

got a odd gut problem feeling sick a lot lately its gradually come on over last few months gp gave me cyclizine dont know why its happening no change in diet etc just feeling sick even to the extent where i have got a bucket to go through the vomit motion but nothing comes up this happening in a morning then feeling sick all day meds stopped the feeling just dont know why its happening recent tests ok colonoscopy clear 6 months ago another mito problem i dont drink avoid fried fatty foods no acid reflux just the feeling sick all day .

#9 Stomach reflux

started a few weeks ago with acid stomach reflux especially in a morning i can go through the vomit process but nothing comes up as my stomach is empty Lansoprazole increased keep a eye on my symptons/ Hydro pool rehab work delayed the hoist at the pool is broke and no time scale on a repair or replacement