Hi there,
Im new to the forums and MS community so i would just like to say hi beforehand.
When it comes to symptoms im very confused and frustrated. Im a young man whos been off work for 8 years now after an EBV onto a mononucleosis sickness which left me bed ridden for 6 months and was eventually diagnosed with post viral ME. A year later after constantly being in pain this changed to a Fibromyalgia diagnosis. A year or two later after many specialist appointments and going to my loacal GP probably once a month with increasing symptoms i was sent to Rheumatology who Diagnosed me with Ankylosing Spondylitis(2017). All this time having numerous flareups of weakness and numbness in my extremities, tingling sensations etc.
2018 i had the typical Hug which i spoke to my nurse about in a routine bloodtest, she was worried and said the rheumatologist might be able to help, they put this down to the AS as the ribcage can have trouble expanding. This hug was the first of many. Later that year i started to go blind in my left eye for minutes at a time, i was chucked on a high dose of prednisolone which inadvertently game me steroidal psychosis but overall improved my eyesight and symptoms. Due to the side effects however and the opthamologist having no answers i was taken off and left to struggle for a further few months. In a specsavers appointment Jan 2019 i explained these symptoms to the optician who shruggingly said “oh thats just Optic Neuritis due to your MS”, me, in shock horror said “but i dont have MS” and thats all that was said. The symptoms subsided for about 5 months. In August 2019 i had a fall, which caused a dislocated shoulder which started a whole new flare up. The gift i recieved was foot drop. Below my knee felt like it was on fire half the time and freezing the next with tingling constantly. Tripping all over the place i went back to the GP who tested and said i had no reflexes and sent me home nothing further was done and after 14 weeks i had some movement in the foot again and another 2 months after that i was walking unaided again. All the while having the things from previous flares returning with a vengeance. All the normal things returned on flare ups (except footdrop) until 3 weeks ago.
Painting my sitting room i started to come over all light headed, my HR was 130 and i was panting. I had a terrible pain across my chest so went upstairs to lie down. As i reached the top of the stairs my vision went to frosted glass so i stumbled into the bedroom and led down till they subsided and passed out. I woke up 3 hours later, chest pain subsided and vision altogether normal but a little blurry and again, footdrop. Ive now been unable to do anyrhing around the house for 3 weeks, exhausted, light heeaded and chest pounting upon any exertion. I had a trip to OOH on the 3rd day who wanted me to be in GPAU ward as they suspected ‘MS Flare’ but there were no beds so i chose to go home.
This is the 4th time ive heard MS from medical proffesionals and i have no idea what i should be doing to either rule it out or get the help i need.
I have an urgent Neurology appointment in a week but i have trouble explaining myself to people due to autism. My memory and specificity aren’t the best and my healths quite complicated.
Any pre-appointment help would be greatly appreciated, thanks
My goodness – what a torrid time you have had – I am really sorry. I hope that you have a useful consultation.