Hi, I’d really appreciate any thoughts, experience and comments regard the below. I’ll try and keep it brief, but ive got quite a complicated medical history
20 years ago I was diagnosed with a benign brain tumour which was removed. Life was difficult for
several years after the op with dizziness, balance, tinnitus and facial
paralysis.
After about 5 years I turned a corner, did lots of exercise, especially cycling which helped with balance. I cycled 1000 miles in a week as a challenge and cycled everyday to and from work. If I had a big cycling day, I did have restless legs and the feeling of my skin crawling, but just put it down to pushing myself physically
In 2017 a car driver drove into the back of me as I cycled home, he hit me at 50mph and I broke lots of bones. I was back on the bike 5 months later.
In 2019, another driver drove into me as I travelled home from work. They hit me from the side and I suffered really bad whiplash and what I thought was concussion, however I didn’t get any help from GP and they said it was probably not concussion and they
kept saying it was due to my previous brain tumour operation which ENT daid it wasn’t.
Since 2019 I have really struggled, i dont cycle anymore. Fatigue has been so bad, there are few days where I dont have a nap, some morning i go back to sleep after breakfast as I’m so tired.
I wake each morning with a numb tip of tongue, dry mouth/sore throat.
I often wake with numb hands and arms.
I suffer from regular headaches.
I have sstruggle with cognitive issues since 2019, i can totally forget what i was going to say 10 seconds previously.
I have vision issues, some days everything is blurry, other days things are much better. I have found glasses have helped slightly on the blurry days, but not always.
Most nights, when closing my eyes in bed I see flashing bright spots/lights.
My sleep is really disrupted and I usually sleep for a few hours at night then wake for a few hours.
I also get leg trembles if I hold them in a certain position and the restless leg and crawling feeling is much more frequent than years ago. It is worse if I am too hot in bed.
I also get trembly fingers from time to time, but this is less visible.
When doing DIY, my hand can lock up and I can get really bad muscle burn if doing a repetitive action (sanding down a larger area)
My balance is really bad again and if I dont watch where I’m going I often bump into things or if I’m gardening or squatting I often lose my balance and fall over.
Now, this is my issue. With my history of a brain tumour and a really bad bike accident it feels like its possible that some are my issues are due to trauma. However, things got so bad after the second accident and have never fully improved. I do go through spells where things are a little better, then I have a relapse and everything feels like I was in 2019 etc.
A couple more things to add. I have Ulcerative Colitis (i told you my medical history was bad) and
when in a flair up i take oral steroids. When on these, quite a few of my other
symptoms reduce, which I read would be the case with MS.
Finally, because of
the brain tumour, i have had many brain MRIs with contrast and they have never highlighted any MS legions which makes me think all of my symptoms cant be MS?, however, should it have been detected or would they have looked for it rather than looking in the area the tumour was removed.
I’ve explained all my symptoms to the GP and my ENT specialist and they have never mentioned MS (and I havent mentioned it to them as I dont want to be one of those people who
self diagnose), however if I Google each of my symptoms, MS always seems to come up as a possible cause.
I finally quit work in 2024 as i felt unable to function and took a redundancy programme and I am currently living off my savings. I’m starting to get a bit worried that my savings will run out and I’ll be no closer to understanding why I feel so ill most of the time, and I’ll not be able to start another job.
If you have stayed with me right to the end, then I really appreciate it, any thoughts or comments would be appreciated from real people with MS and any guidance and thoughts
would be great to help me decide if I should mention MS as a possible cause or if your experince can rule it out (especially because I’ve had lots of MRIs over the years)
