Well, would you believe it, after paying for the private testing, which showed I did have very poor mitochondrial function, I was referred by my GP to one of the 3 NHS Mitochondrial Centres in the UK, who have carried out their blood testing and neurological assessment which, according to them, shows I’m not suffering from a mitochondrial disease! – So, what’s stealing/blocking my energy then ? They had no other explanation for my symptoms. So, I don’t know where I am with this one.
They also carried out a genetic test for MELAS which also proved negative, which is a good thing BUT doesn’t help me understand why I’ve had the PE situation and all of the little ‘episodes’, one of which felt like a heart attack (had abnormal heart-traces since then, where they cannot rule out anterior infarction).
Then there was what I thought was a stroke, where the ball of my right foot went numb along with my 3 middle toes, which took months to go right and 9 months later showed up as abnormal signals on a test where they put needles into your muscles. The original hospital had diagnosed me with anxiety when it happened!!
Following that I had something which felt like a TIA (mini stroke) where I felt warmth travel up my neck and I went disorientated and felt odd for about 30 minutes. Then a few years later I had Pulmonary embolisms (PE’s) in both lungs, with pleural effusion and a partially collapsed right lung – which should have finished me off but it didn’t (don’t you think we must all be made of strong stuff to tolerate all this?)
So anyway, my blood’s not averse to clotting for some reason – but, at least now I know, it’s not MELAS!
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!