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Hi Barbara
Fascinating about your mitochondrial function. I never new there were tests that specific!! All the tests were abnormal then. So were you formally told that your general fatigue and impaired exercise tolerance were due to of mitochondrial function? Makes sense….. Is there nothing that they can do?I’m having an autoimmune test (ANA) as a last blood test, to rule other causes. Funny GP today said yes to me saying it could be autonomic dysregulation. At last! He did say its something you need to sort when home! Cop out! Mind you when I told him I studied medicine some years back, his approach changed!
Richard
Hi kerryokegirl
Yes quite possibly, that’s why they recommend that POTS patients eat little and often to prevent major blood diversion to the gut!
Hi Barbara
Fascinating about your mitochondrial function. I never new there were tests that specific!! All the tests were abnormal then. So were you formally told that your general fatigue and impaired exercise tolerance were due to of mitochondrial function? Makes sense….. Is there nothing that they can do?I’m having an autoimmune test (ANA) as a last blood test, to rule other causes. Funny GP today said yes to me saying it could be autonomic dysregulation. At last! He did say its something you need to sort when home! Cop out! Mind you when I told him I studied medicine some years back, his approach changed!
Richard
The Mitochondrial Function panel is a suite of tests that looks at the various aspects of producing (and recycling) energy, at cell level so to speak. I think it was devised around 2009, it’s a very unique test. Not all of my results were abnormal but, of the one’s that were, it could be determined where in the cycle things were going awry and therefore indicate what could be done, then Dr Sarah Myhill worked out a specific treatment plan. She’s very thorough, there’s loads of info on her website explaining what goes wrong within our bodies and what we can do to put it right.
I thought you had more than a smattering of medical knowledge based on your terminology (and quick grasp of the possibilities I suggested). Were your studies in any particular area of medicine? What did you do following your studies ? Do you have any doctor/consultant contacts who may be interested in taking up our cause on this side of the Atlantic?
Did your GP check your ear for infection (with you showing low grade fever) ? I dont know if the ANA will trap anything, mine (and my ‘anti-smooth muscle’ and my ‘RA’) all came back negative.
Regards
BarbaraHi Barbara
I shall have a look at Dr Myhill’s work. It’s intriguing. You would think her work would have far reaching implications for all chronic pain syndromes. Can I ask what treatment you were given? Are we talking replacement enzymes, that sort of thing or more functional treatments? Is beyond me….My GP looked in my ear, said it looked ok. My operated ear does feel a bit squelchy and full have to say. Do I just go the whole hog (I’ve spent enough, it’s not free here, surprise surprise) and have a consult with an ENT surgeon, get him to look at ear, plus reviews scans. Funny enough my CT/MRI reports both stated they could see evidence of my canal wall down procedure indicative of mastoidectomy, but also that soft tissue was in the ear cavity on superior aspect of tympanic membrane, with ossicular chain distortion. I can see this easily on the CT/MRI myself. However the report doesn’t say if the soft tissue is a result of the grafted membrane, or is infact some regrowth of cholesteatoma or residual disease. My guess is they will say it could be either, so a second, more exploratory surgery will be necessary. Was hoping to avoid, I know dysautonomics do not handle anaesthesia well (I was tachy and v nauseous after first surgery). Anyway one bridge at a time!! Anyway, its unlikely my symptoms are related to this in any way, unless fluid in the ear is causing some dizziness.
Anyway medicine yes, I qualified but didn’t pursue a few years back. I have been chatting to Dr Diana about this, and I believe that due to bubbling autonomic problems I had much lower threshold for stress. I didn’t last long after qualifying, which is sad after training so long and believing I could be one of the good ones. I’m definitely human. I have done various things since, but gradual decline in health and depression has prevented me making any strides. I have worked in healthcare but more in nursing roles, phlebotomy etc. also did a few alternative medicine qualifications (nutrition, stress management)…..seemed a great idea at the time! Now that I am 40 I would rather be stress free and at least moderately contented than being stressed and miserable. I have ruled out now a return to medicine. A few of my friends were my peers at med school, but nobody with whom I could contact regarding this. However, given the fact I still have the title dr, when I get back to the UK I will approach a few consultants who might be interested in listening to our difficult plight. I would love to undertake a retrospective study with long term conditions and look at the course of their illness, maybe with a view to looking at prognostic factors. Some qualitative data would be good to assess patient’s own experiences.
Did I tell you when I saw my GP, he wiki’d dysautonomia with me there….brave man! That’s the worst page anyway, don’t even think it mentions the importance of POTS…etc, so you can imagine the people who have been dismissed due to having a constellation of symptoms…oh it’s just a bit of increased sympathetic drive and anxiety, breathe deeply, take a pill!,
Richard
Hi Barbara
I shall have a look at Dr Myhill’s work. It’s intriguing. You would think her work would have far reaching implications for all chronic pain syndromes. Can I ask what treatment you were given? Are we talking replacement enzymes, that sort of thing or more functional treatments? Is beyond me….Dr Myhill’s work certainly does have far reaching implications, judge for yourself.
Here’s a link to a report of the medical research study/paper:-http://anh-europe.org/news/chronic-fatigue-syndrome-can-no-longer-be-labelled-psychosomatic
Dr Myhill has thousands of followers, her work is very detailed and she does her best to educate people as to what’s going wrong and how best they can remedy it.
I’m currently on CoEnzyme Q10 to help muscles, Vit C every mealtime to help digest food better, I did take oral Complex B vitamins but have realised I need something more comprehensive (I was already on Vit D & Calcium – along with the ZZ & Diamox combination). Just these have still brought about changes. I’ve recently bought Multi-vitamin + mineral transdermal spray and Magnesium transdermal spray from her website, so lets see if these change anything else. There are still other things in her recommended regime that I have to take on but I’m doing it bit by bit.
Regards
Barbara
(UK)Funny enough my CT/MRI reports both stated they could see evidence of my canal wall down procedure indicative of mastoidectomy, but also that soft tissue was in the ear cavity on superior aspect of tympanic membrane, with ossicular chain distortion. I can see this easily on the CT/MRI myself. However the report doesn’t say if the soft tissue is a result of the grafted membrane, or is infact some regrowth of cholesteatoma or residual disease. My guess is they will say it could be either, so a second, more exploratory surgery will be necessary. Was hoping to avoid, I know dysautonomics do not handle anaesthesia well (I was tachy and v nauseous after first surgery). Anyway one bridge at a time!! Anyway, its unlikely my symptoms are related to this in any way, unless fluid in the ear is causing some dizziness.
I’m just looking at what triggered your dysautonomia to suddenly render you so ill. I can’t help but think that infection is involved somewhere and could be ‘sorted’ with anti-biotics. In my book, something has substantially affected your intracranial pressure. There again, I suppose a blocked ear would only give you one mechanism by which to adjust to the change in pressure.
Regards
Barbara
(UK)I have worked in healthcare but more in nursing roles, phlebotomy etc. also did a few alternative medicine qualifications (nutrition, stress management)…..seemed a great idea at the time! Now that I am 40 I would rather be stress free and at least moderately contented than being stressed and miserable. I have ruled out now a return to medicine. A few of my friends were my peers at med school, but nobody with whom I could contact regarding this. However, given the fact I still have the title dr, when I get back to the UK I will approach a few consultants who might be interested in listening to our difficult plight. I would love to undertake a retrospective study with long term conditions and look at the course of their illness, maybe with a view to looking at prognostic factors. Some qualitative data would be good to assess patient’s own experiences.
Richard
What an excellent training ground you’ve had for being an advocate for our kind of problems – Medical School Doctorate, Phlebotomy, Nursing, Nutrition & Stress Management – I’d say IDEAL! You would be doing us all a GREAT service, if you get some consultants on-board, heaven knows we need it, we’ve been grossly neglected for far too long, it’s immoral!
I’d be more than happy to help with the retrospective study (fact-finding/analysis/etc), or anything that would further the cause, just say the word.
Regards
Barbara
(UK)Oh and did I mention, I have kept records of everything, from symptoms progression/remission, to consultations, tests/results, prescriptions, BP/HR, temperature, weight. I’ve also done several studies (e.g. BP during assorted activities; 7 day Urine PH; Sleeping position v symptoms; Blood result changes over time) and made many observations, taken photos and video’s (and I’ve stacks of imaging – supine and upright MRI’s, fluoroscopy, also CSF cine, 3D CT scan & PET scan).
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!Funny enough my CT/MRI reports both stated they could see evidence of my canal wall down procedure indicative of mastoidectomy, but also that soft tissue was in the ear cavity on superior aspect of tympanic membrane, with ossicular chain distortion. I can see this easily on the CT/MRI myself. However the report doesn’t say if the soft tissue is a result of the grafted membrane, or is infact some regrowth of cholesteatoma or residual disease. My guess is they will say it could be either, so a second, more exploratory surgery will be necessary. Was hoping to avoid, I know dysautonomics do not handle anaesthesia well (I was tachy and v nauseous after first surgery). Anyway one bridge at a time!! Anyway, its unlikely my symptoms are related to this in any way, unless fluid in the ear is causing some dizziness.
I’m just looking at what triggered your dysautonomia to suddenly render you so ill. I can’t help but think that infection is involved somewhere and could be ‘sorted’ with anti-biotics. In my book, something has substantially affected your intracranial pressure. There again, I suppose a blocked ear would only give you one mechanism by which to adjust to the change in pressure.
Regards
Barbara
(UK)Yes I have been wondering why on earth now. I thiink it could have started about 18 months ago. It was around the time I was having my ear troubles, a nasty discharge and a gruesome looking ear, with polyp, led me to ENT. I had an infection, which they treated. A few weeks after this I started to develop dizziness (which I hadn’t had during the infection, though cholesteatoma was present), plus coming over peculiar during or after eating. The latter passed but the dizziness continued sporadically prior and after my op in April. Last year my headaches increased in frequency and intensity, and now and again I’d have days of bladder frequency. Then in December I was getting mild discomfort in my chest, this discomfort creating the sensation to cough, lump in my throat sensation, start of appetite loss and weight loss. Then boom on landing it all took a nosedive getting lots simultaneously, plus the new symptoms (neurological). Tests don’t reveal any significant infection, I look ok if thin on some days, then pale on others. I take my temp twice daily and it has crept up to 37.5 on a few occasions otherwise it hovers around 36.8-37.2. Not necessarily abnormal. Don’t feel feverish as such,. Many people have asked me do you think it’s your ear, the change in cabin pressure etc. It could be seeing I was ill on arrival, though it didn’t happen during my Bangkok stopover. I also came to Australia the previous Christmas and new year too, pre-op, and experienced no probs. but I was definitely less well preceding this current trip and therefore weaker maybe. That could be the answer…. I may see if I can see an ENT specialist before I fly, just to see if ear looks ok, no signs of infection or fluid. GP said it looked ok, dry etc, but not sure they have much clue. The symptoms when I look down in flexion come and go too!! All a mystery. With cholesteatoma, it can erode bony structures in the middle ear. Mine hadn’t prior to surgery last April. It can also erode the thin plate of skull superiorly, and that can lead to exposed meninges. Thats what makes the condition dangerous, risk of brain abscess, meningitis etc.. I’m hoping that would have been seen on my MRI/CT though. Would be unlikely given they removed disease, but regrowth can occur. It does affect you psychologically, losing confidence.
I assume you mean when I first presented with discharge and loss of hearing to ENT 18 months ago? I had a combination of steroid and antibiotic (also had a polyp in there), the steroid the consultant put direct in the ear and had antibiotic drops to administer myself. I also had a course of amoxicillin, which made no difference, then co-amoxiclav, but this was from GP’s at the walk-in centre prior to getting the referral and treatment with ENT above…
Don’t worry Joey2423. A pulmonary embolism was pretty much ruled out almost straight away. Trouble with these illnesses they can be great mimickers of serious or life threatening illnesses, always best to air on the side of caution and not always assume that every symptom you have is as a consequence of POTS etc… I hadn’t even heard of POTS, and only vaguely dysautonomia when I first got sick in december, and as I had just got off a plane to Australia from UK, pulmonary embolus was at the forefront of my mind. Thanks for your concern though….
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