CocoPops sorry you have this but glad you got diagnosed. I think with any illness getting diagnosed as soon as possible is key. Only took 62 years to find out about the hole in the side of my heart and get diagnosed with paroxymal atrial fibrillation being on the medication has helped me so much. Also took me 63 years to get my disability diagnosed born with hereditary Hyperekplexia gene mutation SLC6A5 type 3. Its all due to moving to the north west 7 years ago . My heart diagnosed via echocardigram, bubble echocardigram and MRI on my heart over 2020/2021.
My HPX as its shortened to my neurologist in January 2020 didn't know what was wrong so had my blood sent off for whole genome genetically testing. And put me on Clonazepam within 2 weeks after 32 years of limb jerks and 4 bad seizures my limbs where still. It was bliss. Took 2 years to get the diagnosed but that was due to covid hitting March 2020. They forgot to send the results and my neurologist forgot to answer. But we all know what a mad time that was .
But finally having the diagnosed after thinking I was weird for 63 years was a relief even though I was the first patient at the top neurological hospital in the north to be diagnosed with it . My neurologist had to research it not much written about it but for me best thing was the rare disease society gave me a link to a HPX Facebook group been running 17 years ago started by a Brit in the north next city from me. I am not alone and learnt everything my body did and does is all due to my HPX. Everything I learnt and still learning I pass on to my neurologist. He and his team are becoming experts. Have visible and invisible disabilities. Sitting I have been told you aren't disabled but as soon as I move its obvious.
I have been glad a fake ,attention seeking and mentally ill but doctors in 1988 when the limb jerks started but had a GP that always believed me.
I fight for disability rights and try and help people giving advice if asked about various topics to do with disability.
Thats what made me so mad about the Wombles I never thought disabled discrimination would be so be come from the founder and cronies. They tried to gag me the idiots very bad move. Most of them are Christians and the leader lied to here vicar but I get on very well with the vicar even though I an atheist. So she knows the truth of what they did.
CocoPops veered of your diagnose . Thats one of the many things I have found having a mutant gene in my brain receptors does we veer off topic. As those who have met me I can forget what I am saying in a sentence or repeat myself and not know I have said it.
You will have to pace yourself and find ways to do what you want but your way. There is no such thing as normal we are all unquie. Is there a Facebook group with your condition as those with it are the experts. Mine is private group you have to apply to join and we mainly us our names some choose not to . But I like being accepted as me.
They will give you advice when asked,support and you can be honest about how you feel and not judged but helped
I am writing this sitting in bed in Dundee. Yesterday morning my phone pinged just before 3am telling me my first train was cancelled. After how I was treated at Euston Station all had fear came back . I got up checked all my bags . And wrote on the HPX group my fears and felt better writing it down . But I needed have worried. My taxi came at 6am and there was no problems putting me on a different route ,travel assistance all in place at each change.
And the support of got from my friends as thats how I think of them like here we start as strangers but become friends through our words. OK yes I am weird 🤣 .
