My daughter has developed a droopy mouth on the left hand side when tired - basically it looks as though she's had a stroke with no control and she drools which is pretty distressing for her. Brain fog is at a new level of " is this my hand and what is my hand" and seems to be very similar to her grandfather's Lewy Bodies manifestations. This may or may not be related to the very positive SIBO test Is this an ME thing?
Early on, within a few years of onset, I had something which sounds similar. I have always ascribed it to a 'side-effect' of tegretol, which they were giving me because they suspected some form of epilepsy was causing my cognitive issues, as once I discontinued that it decreased in severity over the next couple of years.
I had Bell's Palsy and it didn't just happen when I was tired, and it didn't affect my brain. I don't think those things are characteristic of it. I'd dial 111 and get triaged.
If it had only just come on, I'd have been dialling 999 (I did, when it happened to me, and an ambulance was sent immediately, because of the suspicion of stroke).
Go to GP. Useful to have records of HR and BP (when better/worse) plus Video/photo. I had this and had low BP and HR during episodes. Had low potassium. Extra fluids and electrolytes helped. But can be other more serious issues. Was given 24h ECG.
Thanks for the quick replies . I raised this with GP in telephone consult yesterday - not a flicker of response. There is an awful lot of other things going on which may be overwhelming her. I will collate some info for GP and widen enquiries. Bells Palsy did pass through my mind.
I don't know about the facial palsy, but it's worth saying that SIBO can eventually cause vitamin deficiencies, including B12 and folate. Healthy people have bodily stores of B12 that can last several years before deficiency sets in, but if the levels were low to begin with, SIBO could theoretically hasten exhaustion of them. People may also harbour bacterial overgrowth for a time without clear symptoms, so the condition can have been present for longer than realised. I know from experience that if it's left untreated long enough, B12 deficiency can cause very unpleasant neurological effects, including loss of memory and skills to an extent that resembles dementia. The symptoms may show up as an easily recognisable pattern in some cases, but in others it's harder to diagnose because only one or two rather non-specific symptoms are present. The neurological effects are reversible, but permanent damage is a risk in the very long term. Bear in mind that if she started supplementing vitamins before any blood tests were done, it would throw the results—wherever possible, it's better to test first. Good luck with getting support for her, it must be horribly worrying.
A new onset symptom like that should be taken seriously by a GP, it certainly should not be considered as part of the expected ME/CFS bundle. Always tempting to come up with a suggestion for what may be going on - probably not helpful but I suppose if it were me I'd ask about Myasthenia Gravis which can have some superficial similarity with ME/CFS/ https://www.myastheniagravis.org/about-mg/symptoms/
Thank you -we did manage to get an MMA test last year ( bloods in August and reported in December) which was not clinically indicative (midrange). She had high levels of B12 ( 1497) in blood last March though not supplementing other than a multi vit powder at 1/4 dose so GP was persuaded to look at functional deficiency. Folate was not brilliant but not low ( 11.3 on a range of 3.9 -26.8), ferritin was lowish ( 39 on range of 13 to 150) We had supplmented earlier in year with sublingual but this seemed to make her whole system " run too fast". My aunt who has severe ME and whom, my daughter trait wise is like a clone, cannot tolerate B12 at all. Pernicious anaemia was ruled out too - anti intrinsic factor antibody was negative - there was a weak positive for parietal cell antibody but this is low specifity for PA and shows up on other gut and autoimmune conditions. Something is awry somewhere.
I had a droop on one side after the Covid vaccine. Only noticed it when I tried to have a passport photo taken last year and all attempts I had the new weird droop. No drooling though. No idea what caused this and still much weaker with head and eye pain. Hoping it will all go away.
@Amw66 - I would definitely get your daughter in to see a doctor right away. If you can, I would take her to the ER as it is happening so that they can see for themselves what is wrong. If she needs testing she will get it done a lot faster than going through the family GP.
I agree with all who said have a medical visit as soon as you can, and take a photo or video before to show a doctor, if your daughter's symptoms are not present when you see a doctor. How worrying and frustrating for you! I hope you can get some help with this. Adding more health or other issues onto ME, or one's ME worsening is a huge burden. Trivialized of course by many. Best wishes.
