u/GroovingPenguin

Im in a weird area science isn't quite up to speed yet in,it's taken a lifetime just to get some sort of idea of what is happening (Since it's the NHS..)

H-eds, suspected UMN disorder with mito involvement and suspected glycogen storage disease type 9

I have 4/5 and 5/5 strength on initial testing with rapid onset fatigue causing severe hypotonia (A minute on exertion) but with spastic catch still remaining

It's primarily my lower limbs that are severely affected,my upper limbs are mild and I can compensate for that

But I am struggling,I am constantly tensing and untensing all day burning what little energy I have,20 hours a day (we believe I'm not while sleeping)

I have absolutely no clue what avenue to persue in terms of support,I know there's going to be nobody like me but even if anyone with a spastic type syndrome could give advice

I'm really bemused

I'm trying to buy my first pair of converse,I'm a 5.5 typically or a 6 (UK)

I understand they're incredibly narrow and I have flat feet so taking that into consideration I may need to go for wide (would be helpful if they actually had measurements...)

What is the actual differences between junior sizing and adults?

Like are they a different shape,a lot narrower wider ect?

This has been nonstop but recently it's getting worse

We live in a housing association row of homes,our direct neighbours have two children on the autistic spectrum,one is mild and one is very profound

The child with profound autism naturally gets distressed easily and frequently has melt downs

The next home down has two adults who have started harassing the child, screaming and banging on their door, walls ect (police are not taking any further action)

I share a wall with this child and I'm not sleeping because it is relentless banging,my wall and everything shakes

What action can I actually take?

Tldr: I have a nerve injury, we're running out of options can I request a specific brace? (NHS)

So unfortunately I have two types of palsy because I'm special,klumpke and erbs as C6,C8 and T1 are all affected

I've been doing rehab for 18 months and we've tried so many different things going from gloves,wrist braces shoulder compression ect and it's not really effective

There is one brace I tried elsewhere though and it is amazing, designed for nerve injury,eds ect ect (Yes I'm hypermobile) and fits perfectly+ modular options

It's not much more then what they're already providing cost wise

But is this something I can request or am I stuck with the NHS catalogue?

I'm not quite sure how this works

I'm doing rehab for a nerve injury, we've tried multiple different options of braces ect and they're not really working

I tried a brace on somewhere else and it was absolutely brilliant, purposely designed for nerve injuries and the level of complexities that come with it, absolutely perfect

Worked like a dream

Can I just speak to my OT and they order it or is there only specific ones the NHS supplies/approves of?

Yeah I'm a bit weird

I have reduced and absent oae with mild to moderate hearing loss,so my cochlear doesn't process sound correctly

I also have apd,either due to auditory deprivation or just random (So functionally I'm moderate across the board)

I don't hear of many people with hearing inpariment and apd so I want to ask for some advice

Particularly this:

They keep recommending low gain devices as it's apd protocol but they are useless,how are they ment to help if I can't HEAR

I cannot get them to understand for the life of me adding 1db worth of gain isn't going to do much of anything,it's like farting in space

"Thanks... Now I'm 44db down instead of 45 that's really helpful.."

I'm in a weird grey area of unknown and I'm not coming out anytime soon. H-eds, suspected UMN disorder with mito involvement and suspected glycogen storage deiase

I have 4/5 and 5/5 strength on initial testing with rapid onset fatigue causing severe hypotonia (A minute on exertion)

Like I am struggling,I feel I am constantly running on empty with the tensing and untensing 24 hours a day

How do you manage this,has anyone got good advice?

Homemade mito cocktail?

I'm screaming into the void SOMEONE please hear me

I am 23 my life is barely beginning but already my world is shrinking

I do not qualify for NHS hearing aids despite my hearing impairment,I'm relying on lip-reading and some bsl

I do not qualify for NHS Orthotics or bracing, despite my difficulties because of "Criteria" and presumptions

I will likely not qualify for mobility aids due to my age

So as a British citizen why do I have the right to free healthcare but not to treatment?

Not going to lie I hate being disabled sometimes

Especially today,I have the legal right to free healthcare and treatment..but I don't qualify for treatment

What happened today:

Part of my hearing aids broke,I will have to pay 130 for new parts because my hearing is "too good" to qualify for a free pair and parts

My afo's have had it,they are causing me blisters and a new pair is 700+

Because I don't qualify under the specific list of conditions for a free pair

I cannot afford either of these for the time being

I was moaned at by a medical professional by not hearing my name being awsnered and delayed a whole clinic by 30 minutes

It took 30 minutes for them to walk into the waiting room and speak louder/look around (I have hearing aids,put that one together)

Despite nearly giving myself a concussion I likely won't qualify for free mobility aids because I'm "Young and need to exercise" or "anxious"

My lcl is damaged,it's too loose/lax but exercise and the lord's prayer will fix that (Rather then.. protecting it)

Y'all I am about to cry

I've had these two weeks and they've already broke,one part has snapped off and they're unwearable

I have fine motor issues so I just pulled them out as normal and it just pinged to narnia

Has anyone else done this and what was the solution/prevention? Different material?😭

Hello!

So this is my second set of molds,my first pair was a disaster they were painful caused swelling ect all sorts of issues

I've changed to skeletons due to retention issues as well and they're lovely but I'm finding after many hours they're making my ears a bit sore

Especially as they're acrylic but it's tolerable nothing like before

I know I need to give them time but how long is reasonable?

Edit:

Also will nail polish melt them?

I am Tired

My spasams are starting to spread to my hands and it's getting harder to function

Writing is getting harder,I have difficulties coordinating both hands together nowadays

I've finally won the argument for a spinal MRI but no further action was taken despite blantly ignoring emergency symptoms

We know nothing will show though realistically and we are back at the beginning arguing a fnd diagnosis

I have no appointment till 2027 as the clinic closed

I cannot walk more then 20 minutes now on a good day without being exhausted

I'm waiting on physio and a mobility assessment but I'm not likely to get any equipment without a diagnosis (late may)

Despite nearly giving myself a concussion several times and a damaged LCL

Edit: And I can't get therapy for the anxiety this has caused because it'll be used against me

Y'all I need to give a warning I've learnt recently

I have Ric Phonak lumity so previous generation but that's not relevant

I have widespread cochlear dysfunction,up to 63% is reduced or absent so I need molds to manage it

My ears are too small for canal only so I wear skeletons

Silicone is ONLY available in canal styles, everything else is acrylic phonak won't do anything else

If I knew this I would of actually gone with behind the ears instead

Well first of all we realised they've been made wrong

I've got M powered recivers and they've put a S fitting in causing them to cutout and distort

Second of all,They don't make anything other then canal molds in silicone

I think I've learnt my lesson and next time I'm picking behind the ear models instead :(

I'm at the point of fed up and no return

I injured my knee back in December and couldn't weight bare so I visited the GP,who told me I needed to be stronger and "Strengthen those muscles"

A Month goes by and it's still not right so I get MRI

I have borderline no groove,I am walking on dislocated kneecaps (we knew they were shallow but jesus)

Meet up with a knee surgeon who tells me I just need to exercise and strengthen everything to compensate for the instability "Exercise and strengthen those muscles!"

For context

I cannot exercise or walk more then 20 minutes yet I have 4/5 and 5/5 strength on testing (So not exactly weak)

I have elhers danlos syndrome, undiagnosed neurological disorder (cerebal palsy mimic) and chronic fatigue due to metabolic disorders

As the title saids

We're having a bit of confusion as this isn't something my audiologist office has really done before

I have cochlear dysfunction so I need molds for the gain and occlusion but I have ric hearing aids

So naturally I have slimtips with a Skelton add-on which would be fine in theory but I'm sensitive to acrylic and my ear canals flex a lot (Hypermobility)

We ordered silicone and they came as acrylic,we can't find anyone to awsner why,error or not

At this point we are just assuming it's not an option for these speciality molds/slimtips?

For context these are phonak molds and hearing aids