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Good video. Message from this is those with POTS and suspicion of autoimmunity should strongly consider Sjogren's, because unless you're 60+ with horrific eye/mouth dryness your doctor probably won't. A few useful points: - Autonomic dysfunction & practically any other neuropathy can often...

I replied to this cross-post in the other forum but have copied my response here too for the benefit of others: Not sure if he was working from specific guidelines but my electrophysiologist's protocol was: 12 Lead ECG Echocardiogram 7-day holter monitor 24hr BP monitor Tilt Table Test with...

Yes, it can be performed elsewhere. I've heard reports of it being performed around the mouth, also seen some demonstrations of it on forearm. I guess the cheek/eye area makes it easier to locate a single fibre. I don't know if the location performed on changes the sensitivity for different...

I've been promised this after a muscle biopsy next month 'if necessary' - by that I'm assuming there needs to be some abnormalities in the muscle sample (red ragged fibres?). Its interesting that you bring up migraine, my myologist also felt that my tendency to severe migraine after trivial...

@Dechi, Do you know if you have had a Single Fibre EMG? This is the test specific for MG, different from a regular EMG. I understand from my neurologist that when SFEMG is negative in combination with negative antibody blood tests, you can be quite confident its not MG. Ryan

Thanks @Sasha. Pretty good round-up though still lacking detail on rapid gastric emptying, which I find bizarre given that they acknowledge it as being significantly more common than gastroparesis. Hanging around POTS/MCAS/EDS forums I often see well identified gastroparesis, but an awful lot...

If you take this to a Myologist (muscle disease specialist) they should absolutely take note. In the right context Hyperlactatemia will raise suspicion of mitochondrial disease and should lead to biopsy and/or genetic testing.

Just to confuse matters further, lactate and the enzyme LDH exist in L & D isomers. The tests we're talking about only measure L-Lactate, which is normally produced during anaerobic activity by the activity of L-LDH in our cells. D-Lactate should only be found in very small amounts (100x less...

Well that was quick, results were waiting in the letter box :laugh: Repeat lactate test was normal! Hmm. Still going ahead with muscle biopsy & genetic analysis as far as I know, presumably lactate elevations can be transitory in mito diseases. Based on what Mark Vink has said in the past (and...

Yup, registered 7.4 mmol/litre on a recent test, normal range < 2mmol. I had been active directly beforehand, brisk walk from train station to hospital, then up a flight of stairs... just normal everyday stuff for a healthy person so it was still excessively high. I saw some literature suggest...

Hi Matt, This sound quite familiar to someone with POTS and a hyperadrenergic leaning. Before I started taking more care I experienced all of those things you mentioned. Pulsatile tinnitus, sleep disrupted by tachycardia and hyperventilation also tended to manifest the more I pushed - the...

@BeautifulDay, I forgot to report back that I mentioned the elevated B12 status to my neurologist. She didn't comment on possible links to MitoD but she did take it seriously and wanted Methylmalonic Acid (MMA) and Homocysteine results for a clearer picture. Ryan

Ah ha, be careful, it is a money pit!! The heated sheet I have has a manual slider switch for temperature settings. My original plan would be to leave the sheet powered permanently and use a simple microcontroller to short the appropriate connection on the slider switch to change temperature...

Great blog post @Jenny TipsforME :) I've been a big enthusiast of home automation for many years, its great to see it finally reaching the masses. The advent of the far-field microphone arrays and cloud-powered speech recognition in Amazon Alexa/Google Home is a real game changer for intuitive...

Interesting that a MitoD doctor has noted that. There were a few of us (myself included) back on the other forums that talked about finding B12 testing similarly out of range without supplementation. I think we'd probably know about it by now if it were caused by one of the really serious causes...

Just got round to watching this. Interesting talk by Dr Systrom, with some points that I don't think represent generally accepted knowledge. Important bits for me were: 1 - A significant proportion of POTS patients will have <80% VO2Max on day 1 CPET. As so many CFS patients appear to have...

Julian Stewart and Andrew Del Pozzi ran studies and published papers detailing what I assume is a similar train of thought, @Jonathan Edwards. I forget the specifics, but from from what I recall with POTS patients they saw an exaggerated transient kick of hypotension upon standing, which led to...

Everytime I hear someone saying how much worse they are after eating, a part of me shouts "go see a good GI doc for transit tests now!". These dysmotility issues can absolutely destroy you. For me it was/is the difference between coping with all day gentle activity (mild CFS) vs crashing...

@Invisible Woman & others, I just realised Prof Aziz has an updated version of that presentation, complete with video:

I'd encourage anyone having post-prandial issues in the context of autonomic dysfunction (so the majority of us with ME) to read the theories presented by Prof Aziz: http://www.potsuk.org/UserFiles/File/Prof_Q_Aziz_Gut_and_PoTS.pdf He sees it as a combination of hemodynamics & gastric...