Myasthenia Gravis or something like (muscle weakness/fatigue)

[NotsurewhatIamdealingwith]

I'm wondering if someone could talk to me about Myasthenia Gravis or anything that might look a bit like it. DS(7) is currently being tested for this and on paper it described DS down to a T but not having met anyone in person and having looked at a lot of you tube videos (I know I know not great) I'm not convinced. He had a diagnosis of ASD at three but it doesn't fit

DS looks fine (other than a waddling walk) but he Will suddenly get tired. When he is tired he will not move at all, his legs will literally go to mush and feel like jelly, and will lie flat on his stomach. sometimes he will get back up after about 10-20 mins sometimes he won't and he stay like that for quite some time. Sometimes when he is really tired generally he will spend most the day like that. Sometimes he will be able to respond you you sometimes not. Mostly he is still taking stuff in. His grip is affected and his stomach muscles.

We are struggling with getting out and about at the moment. We have a wheelchair but the whole thing feels a little insane, he can go from riding a bike (with stabilisers) to being collapsed over the handlebars completely unable to support his own body weight.

Has anyone dealt with anything like this? Does it sound like Myasthena gravis or could it be something entirely different? In all honesty I'm not sure the doctors have a clue and at the moment everything tested draws a blank

it is a new one on me, but I googled and the first thing I came up with was this
www.patient.co.uk/doctor/myasthenia-gravis-pro

And then it rang bells with a woman I met in hospital (the neurology/auto immune department) who would walk around pushing a wheelchair until her legs started to go when she would sit in it and then get back to her bed.

The key thing is that she had two kids and was finding ways to manage and still have a happy life.

I hope this helps a bit, but wishing you the very best with getting more answers

Have you had a muscle biopsy? I only ask as I'm pretty sure it's a option ( sounds painful!) as ds has dyspraxia and I read about it some where (can't remember!) showing up altered / non standard muscle protein.

I have met a very extreme dsypraxic so I'm not suggesting it could be that, it's doesnt sound like dyspraxia

No, this bit I don't think is dyspraxia either. His is described as having dyspraxia style symptoms and there are some motor planning issues and issues with coordination and crossing the midline. but this extreme floppiness feels different...

Senvet - yes that's what is looks like. suddenly he goes and lies down

OK so you are now more in my world - I am a wheelchair user, with erratic symptoms, just not quite as erratic as your dc's.

Waddling walk is exacty how dd described me the other day. For me, this is an issue for a physio, ideally one with some additional neuro qualifications, but working on core stability. It is he sort of thing pilates instructors do well, too.

The issue for dc is that the exercises are all about doing things slowly and with control. They really do work, but are just not very appealing to kids. That said they are now an absolute staple for sports, particularly martial arts etc, so maybe that might help sell them to dc if it is what your physio recommends.

Physio via GP - it will most likely come in a block rather than in an ongoing provision, but an assessment to start with might help.

My nutritionist says vitamin D very loudly to me, so might be worth asking if the same would apply to dc.

Fingers crossed my amateur's ideas will turn out to work for dc.

My dad had myasthenia gravis (he has died now - not of this though). He took medication which controlled it pretty well, but before he was diagnosed and got the medication, his legs would sometimes just give way and he would stumble / fall. He also also a droopy eyelid - this was his first symptom. If you have any specific questions I can try and answer them.

My mother in law has this. She had heart surgery many years ago and an op on her eyes.

She is fine other than that.

My son was thought to have this. He had a muscle biposy and nerve conduction tests and was put on a trial of pyridostigmine to see if it helped. (The jury was out on whether it did so we discontinued it)

A usual tell tale sign is the droopy eyelids.. they can't keep them open once fatigued and are literally half shut. My son had this but not to the extent that it was as obvious as most MG sufferers have.

I think you probably have to wait for the test results, unfortunately, but if he does have it the meds DO help !

Lots of questions so it is a bit of a muddle.

DS Eyelid does droop, but only a little and it is extremely variable. so there was nothing the dr asked him to screw his eyes up and squeeze his fingers and it drooped but never more that a quarter of the way down. When he is exceptionally tired it is noticeable but I don't think you get the full closing effect.

If you are touching him at the time his muscles go from taut (like an elastic band pulled tight) to soft and swidgy and back again. DS falls frequently and hurts his ankle but we can't really get a hang on whether that is to do with this problem or his joints being quite loose or genuinely tripping. Most of the time he seems to get some kind of warning and sits in his wheelchair or lies down, but down of the stories online seem to suggest that there is warning.

Tagine - did your dad get notice or did he always fall? DS often looks like he has nothing left to give (if that makes sense) and stops talking. the You tube videos I saw made much of the slurred speech (which is occasionally there) but usually DS is just absolutely quiet. I wondered whether that is because they are trying to talk through it or demonstrate it whereas DS always having been like it just doesn't talk. Can I ask what your DF would do?

Medusa - did they settle on a diagnosis for your DS? Have you found it helps?

Senvet - on a practical level can I ask a few managing questions? I running on nerves atm, waiting in case DS falls over. When DS is looking and feeling strong I try to get about a bit without the wheelchair but the latest time he fell thankfully at the end of the walk near the the car. Do you still appreciate trying to get out without the chair or do you just take the chair? That decision alone I'm finding hard it would be interesting to hear how it feels from the inside. DS has come on dramatically in the last six months and is starting to explain things (sometimes I can straighten my arm (so sometimes he can't)) but he hadn't been at a great school before that and I have had to put a lot of work into the idea that you don't hide whats going on because no one can help if you hide it.
I'm in the process of challenging the Blue badge decision, we are hitting the sticking point of well does he walk? Yes but... A lot of the solutions (carrying) might have been ok previously but really not ok now
We came out of a heavyweight tribunal last year so we do just physio as part of DS statement, not as much as SLT and OT (which is actually quite good provision) but just about adequate. Thankfully our INA is exceptionally skilled

It all feels a but hard at the moment. Not sure I know what I am trying to ask, been a big part of a local special needs groups but increasingly feeling the problems I'm facing are not the same as anyone else. If I have asked too many or too personal a questions please don't feel offended or that you have to answer. It's just atm I am trying to make sense of things in my head and it has come out a bit of a spaghetti junction