hi im not comfortable saying my age but i’ve been having symptoms since i was around 11/puberty age, but they werent nearly as bad then. I’m in Scotland and i’ve been trying to get doctors to listen to me for years. They keep saying its just anxiety because my bloodwork and simple testing always come back normal and they never refer to specialists except for physio, and they only made my pain worse. The main things i deal with is muscle, joint and nerve pain, some weird vision problems that im not sure how to describe or what it is (seeing “auras” around people and objects, subtle dark and light areas in my vision, vision goes blurry sometimes, plus just pain in my eyes more so recently), my body goes numb and i get pins and needles a lot just from sitting down, im always fatigued, get a really bad period, and i cant seem to get a full breath in a lot and it feels like my chest is really tight, and its all worse when its humid, even if its just a little bit, i cant seem to regulate my temperature at all. Originally thought it could be ehlers danlos and pots because i’ve been told im hypermobile and the symptoms i was more aware of matched with that, but i got tested for pots and it said its not that, same with ehlers danlos. And i cant seem to find anything that matches my symptoms except for MS
im scared i have the progressive type because i dont seem to have big relapses that stand out like other people do, its just getting worse and now i cant work and can barely leave the house
im just waiting for an a&e trip at this point and that thought terrifies me, i dont know what to do anymore and im really tired
Hi clutter. I am so sorry to hear of all your issues and the doctors not listening.
When anxiety plays a big part in anyone’s life, doctors can be dismissive of other physical issues.
Can you get a private consultation with a neurologist? I think it costs around £200.
I did this way back in 1999, when the NHS waiting list was 10 months.
Boudsx
i never really thought of it as an option as i assumed it’d be hundreds for a consultation, but i think once i get my disability benefits sorted i could actually afford that, thank you i’ll look into it
Go private!My consultant has put me on his NHS list .The NHS wait to see a Neurologist with a GP referral was 27 weeks where I live.
Ooh i see! What was the wait on his NHS list in comparison if i can ask?
Hi again. I recently saw on here that it still costs around £200 or a private consultation. You usually see the same doctor on NHS. I know some people dont agree with queue jumping this way, but needs must sometimes!
After the private appointment, I went onto his NHS list. Dont agree to private tests…they DO cost a fortune, unless you have private health insurance.
Boudsx
I was advised that the tests the consultant wanted to do would cost around £700.He offered to put me on his NHS list.I got the impression that you jump the queue.If you can spare the money i would advise anyone to go private for an initial consultation.
@clutter
Wow im up early at 10 am today. Usually 11.30am. I was diagnosed with PPMS in 2014… back then I didn’t even know I had ms.
You see peoples aurors Wowzer!! Super power! Wish i got that side effect, i only got foot drop and tiredness. I went back to college and did my training for 9 months and now im a complementary therapist in writing, to much hard work for me to do nowadays.
I’d advice trying to get oxygen therapy close by, sure theres a place nearby.
I get mine every week now. It makes me feel like a charged up rechargeable battery for a few days at least.
Im up in the north east of too. After college training i have loads of healing crystals and pendulum’s, i also did Reiki level one later.
Do you see colours when you close your eyes at night? You might be blessed by being able to see that you know, avoid black auroras people!
Pinks an blues are happy
I was given an AFO from my local orthotic clinic, bit hard to put on at first but i sussed it out soon enough. Not on many drugs a day only Fultium D3 an one paracetamol, i also take just other vitamin supplements daily. B12, vitamin E, oh i eat a bananna every day with my wholewheat breakfast after trying the New MS wonder drug Fampridine ( put me in bed for 4 days) i’m not allowed to go back on the trials now.
Try cupping your hands like a ball? Feel anything? If it’s roasting… your definitely going to be great as for Reiki training.
I’v agreed to try a KCR (kinetic chain release) treatment this week.
Like a heave sports massage thing, i remember getting an invigorating massage at college one day that made me see stars ( hope its like that)
Miss my college, graduated in 2016. Only bloke in a class of 26 ladies.
Yea, so hi, your not alone
AFOdriver