Hi everyone, I’ve been told by the GP I have symptoms of MS and been referred to see a neurologist but am still waiting for an appointment after two months. I’m feeling extremely isolated. I live alone, and have tried reaching out to a few friends about it (not my oldest, closest friends - I don’t know how to tell them especially as I haven’t had an actual diagnosis yet) and have been confused and depressed by peoples reactions. I have a feeling I am about to find out who my real friends are. I’ve been trying to hide my symptoms from people mostly. I’m not sure what I should be doing in the meantime - I read it’s good to exercise. I play the accordion and have been worried to play it in case the weight and exertion could do damage?
At the moment I have burning thighs, icy cold water sensation trickling from my knees downwards, and unreliable legs (on and off). I lose my balance a lot. I drop things a lot (or throw them across the room!) find some things difficult to hold. Keep thinking things are further away or closer than they are. All around my rib cage is sore and feels like I can’t support my upper body. Like I’ve been beaten up. I keep walking into things. Lower back pain and forgetting words, what I’ve just done or said. Also the embarrassment of toilet problems…and sudden maddening itching…People are taking it personally that I’ve momentarily forgotten their name or what they’ve told me, or their birthday. I forget things I really care about, things I really want to remember and it causes me a lot of confusion. greyouts, odd visual problems and sensations, headaches, and a sudden decline in vision where I was no longer able to read small writing such as on food packaging. Also has anyone had a thing where you can’t breathe and feel your clothes are tight round your neck - but they aren’t, and you feel theres a load of flesh grown onto your throat so you cant breathe?
Yesterday I dropped a lit cigarette on myself and didn’t feel that I’d dropped it. When I felt my thigh burning I thought it was just a phantom burning like usual and so didn’t check straight away . Luckily it only went through two layers of clothing and didn’t do any damage.
I’ve been having strange symptoms for ten years since an autoimmune system disease wiped me out and I had to walk with a stick for six weeks (it was a kidney disease, docs didn’t know why I had walking problems) since then it’s been fatigue, depression, massive weight gain, diabetes, high blood pressure (4 tablets a day) then swallowing and appetite problems resulting in massive weight loss ( 8 1/2 stone ) after which the diabetes has apparently disappeared, mystery illnesses, which then disappear leaving me fit as a fiddle for a while till old symptoms come back or new ones appear.
I am a musical performer and I worry this will stop me performing. I have already cut down a lot on what I do.
Does anyone have any advice how to get through this? No one I know in real life will have any idea how I’m feeling.
My best friends at the moment are my cat, tea, candlelit bubble baths and mr. electric blanky.