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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's unlikely that I have typical Type 2. I probably wouldn't have had large amounts of ketones in my urine with that, while also hyperglycemic. Basically Type 2 diabetics should be able to produce enough insulin to avoid going into hyperglycemic ketosis (versus carb-restricted dietary ketosis).
So I'm not sure what the classification or treatment is.
I can still take the Gliclazide, though might need a 2nd dose in the evening. Or maybe I can take another drug similar to metformin, but without screwing around with my lactic acid production. The fiance called my doctor this morning to report my symptoms from the drug and that I stopped taking it, but we haven't heard back.
A very small study - 11 patients, after 4 left the trial and weren't included in the calculations. Three of them were due to the researchers assuming those participants weren't complying with the diet, based on their blood ketone levels.
That's the one I was talking about - this guy has worked with Dr Mosely to produce an easy to do diet book.
Sound familiar, anyone?
I had my first "migraine" at age 11. If I recall correctly, I vomited 6 times that day. I needed eyeglasses for the first time shortly after. I woke up in the middle of the night with numb/pins-and-needles legs at age 27, and hemiplegia which lasted for 3 weeks. MRI and a ton of other tests were clear, aside from elevated homocysteine. Hemiplegia resolved shortly after a normal dose of folic acid, prescribed by the neurologist.
Got that too now.
This also started a bit in my feet at age 27, several months before the hemiplegic migraine. I pretty abruptly stopped being ticklish everywhere as well.
I've had ataxia since ME symptom onset at age 32. It's been worse in the past few days, along with the lactic acidosis symptoms.
This was happening in the week prior to my diagnosis, and a bit after as well. Approximately 150/100.
Yes, and getting worse with the symptoms of lactic acidosis. Weakness was most notable in my shoulders. I've never really thought about my muscle weakness in terms of proximal versus distal, but it's typically been my thighs which have the most problems, while my fingers are pretty good even if typing all day.
No convulsions (I think), but I usually get an aura with migraines, including the temporary loss of most vision. And had the hemiplegia for several weeks. Also the ataxia, tremor, and myoclonus.
First noticed purpura at age 15, and hirsutism at around 21. Also scaly reddish skin on my face, but I think that started after onset of ME symptoms, at age 32.
So it would be pretty normal that I don't have family members with it. Though aunts and uncles might have few or mild symptoms. They definitely do have some various things going on ... but nothing major. One very young cousin has an eye problem which seems to also be present in MELAS.
Heteroplasmy is the degree of distribution of the mutation in tissues. This can increase over time, until there's enough of the mutant mitochondria present to cause a lot of problems.
My mutation is on MT-ND1. It's also associated with adult-onset dystonia. Mutations on this gene seem to be a rarer cause of MELAS, with about 80% of cases coming from a single mutation on a different mitochondrial gene.
My first episode of headache and vomiting was at age 11. Though progression seems to have been very slow, up until onset of chronic ME symptoms at age 32.
These would be stroke-like episodes, possibly presenting like migraines, not proper strokes. I had the hemiplegia, as mentioned in a previous post. Also my trigger for migraines was MSG/E621, which is an excitatory neurotransmitter. First episode at 11 happened after I started eating ramen noodle packets with a lot of MSG. Episode with hemiplegia happened when avoiding MSG but not realizing it was in the foods I was eating under a different label.
Pretty familiar list of symptoms, except the eye stuff. I'm interested to find more about what the myopathy entails, however, since that's a very vague term. As well as how the exercise intolerance presents.
Yes to ataxia, distal mild numbness in feet primarily. I think tendon reflexes were reduced on one side during my hemiplegia, but I should dig out my old records to find out. Fasting glucose definitely high!
Headaches and ataxia.
A hearing test a few years ago did show that I don't hear a certain deep tone, but otherwise I'm fine. Eye sight is pretty bad, though mostly in a normal way as far as I know. I do see mildly splotchy shadows, but I think that's been since getting ME symptoms.
That life span is why I'm really hoping it isn't MELAS. Anesthesia reaction is interesting, since a lot of ME patients have problems with that.
I think I tried arginine before, with no noticable impact. But if it only helps during episodes, that could be why. Will look into citrulline.
Lactic acidosis seems likely based on symptoms. A lab result from 2012 showed low CO2 and high anion gap results, though it didn't list ranges so I'm not sure. I don't think creatine kinase (CK) has been tested, at least not recently. EEG - not sure. Last MRI was in 2006, 5 years before ME onset. No lesions where mentioned.
@Valentijn will you be my doctor please?
No neither had I but coincidentally the letter between my neurologist and GP I got a copy of yesterday points out that my distal strength is good. Also that I have hip flexion weakness (well I did in the appointment). I feel a bit silly actually not noticing that is where problem is. When my legs go heavy and I can't move them I'd always thought the problem was with quad muscles.
I've been trying to find a patient account of what a stroke like episode feels like. Have you come across any MELAS patients?
Yes it is very similar sounding to ME, with some extras. But the medical jargon may add up to quite a different experience in real life?
I get high random glucose but not fasting
My reflexes are apparently brisk
Does the ataxia come and go?
Yes I'd be at the end of my innings with that prognosis and I don't feel that's the case. It doesn't sound like there's much they can do at the moment IIRC, so may not be a diagnosis you want to know? Unless you just can't stop thinking about it.
I've had high creatine kinase (510) result before on an ache all over myalgia day (no 'exercise' or injury). But retested twice without that type of pain it's normal.
Normal - 5'6". Albeit short by Dutch standards
Yes, the symptoms are very similar. It's hard to tell if there is a major difference, aside from MELAS having some additional symptoms which aren't common in ME. Such as diabetes, hemiplegic episodes, etc. Hemiplegia is a big one, because it's super rare, and I know I've seen several patients mention it here.
There are a couple forums I think (or subforums on general medical forums), but I haven't looked at them yet.
Not sure ... the relevant article is paywalled and sci-hub has trouble getting it. But it's "cerebellar ataxia", which can be the result of either inflammation or damage. In the case of inflammation, I suspect the ataxia would episodic when the inflammation is.
My guess would be that the ME and diabetes in my case would both actually be part of MELAS. ME would technically be a misdiagnosis, if there are exclusionary criteria in the definition used.
Yeah, mine was pretty normal before the diabetes thing. It seemed to be triggered by a non-flu virus that was going around.
There are some supplements: Co-Q10, arginine, carnitine, citrulline, and maybe thiamine.
Nope
And 23andMe doesn't test for the SNP which causes 80% of MELAS cases.
