Unexplained symptoms after anaesthetic

[Barney_official_]

Hi, I’m 16 years old and I have hEDS (Hypermobility Ehlers Danlos Syndrome, POTS (Postural Orthostatic Tachycardia Syndrome) and lots of gastro problems Gastro Parises and Fore-gut dysmotility). Due to my gastro problems I have an NJ tube (a tube going into my bowel) but I vomited it out on Sunday, I then had an endoscopy to have a new one put down under general anaesthetic but I had a bad reaction. Prior to the procedure I was walking, going to the gym, mobilising normally (to an extent because of my EDS & POTS)but now following the procedure I’m having fit like tremors, have extreme muscle weakness and fatigue, so much so that I can barely move my fingers. My doctors are unsure of what is causing me to be like this. Do you have any idea of what it could be?

[Gambit62 Administrator]

Presume that doctors means more than just your GP and includes the doctors at the hosptial who were involved in the procedure.

If the anaesthetic you had was nitrous oxide then it could be to do with B12. - nitrous oxide reacts with B12 turning it into a form that your body can't actually use. For most people this isn't a problem because it generally doesn't affect all of the B12 stored in your body so the body can adjust and tap into this but if you have an absorption problem then the mechanism for releasing the stores doesn't work properly. It's possible that the stores could be complete depleted but people can normally rebuild levels and stores from food quite quickly.

However, if you have an absorption problem this may have meant that your stores are a) depleted and b) you can't use them as efficiently any more.

Serum B12 isn't going to pick this up - don't know if active B12 would - but suspect it also wouldn't. Tests that might help confirm if it is B12 would be MMA and homocysteine - but need to be done in a context that rules out other potential causes for raised levels.

Another way of going would be to try a B12 shot and see if that works, but I'd personally see if other things can be ruled out first.

[TrishEtc]

Oh my gosh, I’m so sorry you’re going through this. My daughter has a milder case of hEDS than yours, but has also had all sorts of health problems as a result. We discovered that gluten to be an issue, but it didn’t present itself until her late teens. If you have an NG tube, be sure that you are being fed an allergy-free formula. Not all of them are. Besides gluten, other allergies can include corn, casein, soy, whey and eggs. My family is also prone to B12 deficiencies. My son’s doctor refused to test him, since he was “too young” to be deficient. Not willing to accept that pronouncement, I had him tested at an independent lab. Bingo. My point is that sometimes you need to be your own advocate. Good luck with your treatment. You sound like a very intelligent teenager and that will serve you well in this difficult journey.