New here and looking for some clarity as I’m feeling a bit overwhelmed.
I’ve had a roller coaster of a journey for over a year now. It began early last year when it was discovered I had precancerous cells in my womb which I ended up having a total hysterectomy including removal of my ovaries in August, I’m 48 years old.
So I found myself in a wonderful world of surgical menopause and navigating all the symptoms of what that entails. The worst ones being constant migraine headaches day and night, spells of blurred / double vision, vertigo and dizziness which would come and go.
Then late September I began HRT under a private specialist which got rid of the migraines thankfully as it had been going on for nearly a month. Was still getting on and off vertigo and blurred vision and I also kept getting strange feelings of deja vu and experiencing false memories. Then one morning in October I had a scary spell of complete brain fog where I got so confused and couldn’t clearly remember what had happened up to two days prior which freaked me out and took a couple of hours before things came back and started to make sense again. I thought I was losing my mind!
Then a couple of weeks later at the end of October I had a suspected TIA. About 3am I woke up and my right arm and leg were so weak, I could barely move / lift them. I staggered to the toilet to pee and then struggled to lift myself up afterwards, but finally managed to get back into bed. Although I just flopped myself face down at the foot of the bed as couldn’t position myself. I noticed I was dribbling too. Then I managed to shuffle my way to the right end of the bed and went to sleep. When my partner woke me up in the morning about 8.30, I still had the same weakness, but also had slurred speech and the right side of my face felt paralysis, I kept laughing which freaked him out. I was with it mentally and knew what was going on, but just found it funny! It lasted about half an hour after waking before it got better. He took me to A&E and that was when they suspected a TIA as the symptoms had gone apart from a little weakness still in my right arm. I was given a CT scan which came back clear. They put me on a statin and aspirin and sent me home, with a follow up appointment at the TIA clinic a couple of days later.
I had an MRI brain scan (without contrast) and from that they found a lot of lesions which were “highly suspicious of MS” and was referred to a neurologist.
I saw her in December and she said my history of symptoms didn’t seem to be typical, as they haven’t lasted long enough. But I was sent for another MRI with contrast in January on my head and cervical spine and a lumbar puncture which I had done a couple of weeks ago in Feb, with a follow up appointment to see the neurologist in April.
My prior symptoms have not come back since my last episode in October. However I get a real sudden urgency to pee a few times a day and I get a persistent itch on my lower back that I’m always scratching but there’s nothing there. Very occasionally I get a sore feeling on my upper arm that feels like a graze but again there’s nothing there. In general I get incredibly tired easily both mentally and physically but the thing I’ve really noticed is how easily confused I get, lose my words / train of thought when speaking and have trouble staying focused.
I then had another severe brain fog spell earlier this week which freaked me out while I was working from home. I suddenly got confused with what I was doing and my head felt flooded with tons of random jumbled up thoughts and vague dream like memories that I couldn’t pinpoint. My memory got jumbled up too and couldn’t clearly remember what I was under investigation for at the hospital and what the timeline was, it just wasn’t making sense. It got me upset but disappeared after a couple of hours and left me with a headache, no other physical symptoms. I’m still getting easily confused and my thought process is like wading through treacle at times but not as bad as it was thankfully.
I sent an email to the consultant with an update on this and she brought my appointment forward to last Friday. She advised that my MRI didn’t show any new lesions, but my lumbar puncture shows some results that seem to relate to MS. She put my brain fog episode down to stress, even though I wasn’t feeling stressed at all, and says it sounds like i have an over active bladder so has given me Solifenacin to take but warned it could cause memory loss so I’m rather reluctant to try it!
She wants to take the approach of “watch and wait” but will arrange for an urgent MRI on my thoracic spine to see if any new lesions have appeared as she can’t fulfill the criteria for a diagnosis without them. She says everything is pointing to MS but my symptoms and their duration aren’t typical.
So what type of MS could it be if they’re not typical? I guess I’m overthinking everything and trying to work out if there’s a crossover especially with menopause adding to the mix.
My head is just spinning from everything. I’m getting paranoid at every slight twitch I feel and googling everything but it’s such a minefield. It’s like I’m a ticking time-bomb waiting for something bad to happen.
Has anyone been in a similar situation please? Thanks in advance and I’m so sorry for such a long-winded post, it’s taken me all day to write it.
