Last reply 1 year ago
I'm new here. This is my story.

I vaguely remember seeing some Shift posters outside my neurologists office a few years back, but I was Googling some stuff and up popped Shift so I thought I’d sign up. So yeah, hi.

I went to see my GP with some balance issues (not unusual for me) that were accompanied by short dizzy spells in early 2014. I was sent for an MRI scan, as anything to do with the brain always results in an MRI scan for me given my previous history (had a brain tumour in 2001/2). Few months later (thanks, NHS) I had the MRI scan and then a short while after I got the results which said I had some inflamation of the brain (now I know they meant lesions). Don’t really remember what happened after that but I bounced between a couple of neurologists who weren’t particularly sure what the issue was before I fell under a lovely team of MS Nurses and a specialost neurologist.

I don’t really remember how long that particular episode of vertigo lasted, but I remember them telling me it was BPPV. Jump forward to Sept 2015 and the start of university I started experiencing some slurred speech. It felt like someone had a remote to my brain and kept pressing pause at the most inopportune times. Anyway, that lasted about 3 weeks and ironically stopped a few days before I met with my neurologist. The slurred speech was put down to tiredness and was possibly a side effect of having had a brain tumour removed almost 14 years previous. Yeah, I’m not sure I understand that either but apparently my brain isn’t normal so it could have a tendancy to experience these sort of things. It was called a radiologically isolated incident, totally two incidents including the vertigo the year before.

Fast forward to about 5 months ago and the BPPV is back with a vengeance. I found out while playing basketball when I looked over my shoulder to catch the ball, got insanely dizzy and missed a wide open layup. It was quite embarassing, really, and felt like the room was spinning. The BPPV has just been getting worse and worse and now affects even my every day walking. Then all hell broke loose.

About 4 months ago I was diagnosed with anxiety and depression. Then I got this constant annoying headache that wouldn’t go away. Then I started getting sharp stabbing pains behind my eyes that often felt like someone was pushing against them from the inside. Then the random pains all over started coming back. Then I started having severe pains in what I first though was my chest but now I feel like it’s more the area between my stomach and my chest, possibly the diaphragm area. Yesterday I felt like I got stabbed in my stomach, the pain was absolutely insane. There’s also these weird shakes/tremors that make it look like I have a strange twitch. I feel like I’ve probably missed out loads of things, but the most important thing that’s been impacting my life the most right now is my loss of cognitive functions. I can’t remember stuff that happened 20 minutes ago, I can’t keep concentration for more than 5 minutes, I can form sentences properly when I speak, and most ironically, I can’t solve mathematical problems (or any problems for that matter). I’m doing a maths degree. You can see the irony, I’m sure.

So that’s my story. Yes, this took me a long time to write, no, I probably don’t make much sense and oh, I haven’t actually been diagnosed with MS yet. What a rollercoaster!

Feel free to chime in with any similar things you have gone through, or simply just share in the irony of the situation, it’s cool.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.

1 year ago

i dont know if you had the same vertigo as i did. I am MS diagnosed, but the symptoms you described are the same as by me. I couldnt even sleep on my back, a couple of weeks i had to sleep in a sitting position. This shaking feeling began when i lyed down or stood straight, because it didnt stop i went to a neurologist who gave me a broschure with certain vestibular exercises.
by regularly performing these exercises (2-3times a day) my balance came back and my dizzines and shaking simply disappeared. I cannot promise you the same, but trying doesnt cost anything. 🙂

1 year ago

It sounds like you have been on quite the roller coaster ride, I hope you get answers soon. You have come to the right place for help, understanding and a good place to rant. Potter

1 year ago

I also hope you get some answers soon! Wether it is MS or not. It must be very frustrating for you

1 year ago

I started wobbling slightly about 5 years ago – I thought it funny at the time – I don’t now! I was tested for BPPV. Result: normal. Also had surgery on my cervical spine to stabilise two unstable vertebrae….. Still I wobbled, only more so. I felt like I was walking on someone else’s legs whose left leg wouldn’t obey. I can imagine how you feel. Not knowing is the worst. Once you have a diagnosis, you know what you’re dealing with, however daunting it might seem. Shiftms is excellent for support, to have a moan, a laugh, to share. Hang on in there. Hope you find out soon.

1 year ago

I can’t offer any practical help (other than to tell the uni NOW what the situation is, so that you don’t add to the problem and you get the allowances/adjustments to your work schedule that you’re entitled to). However, my experience is that the ‘limbo’ period (LIVING HELL) you’re going through is infinitely worse than living with MS. The words that stay with me came from my neuro at the point of diagnosis were:’ I’m not telling you that you have a terminal illness. You have a chronic condition and it’s up to you to cope with it’. With the right medical team, the right drug and the right attitude, you’ll be able to do just that. Big, big hugs. xKay

Join to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.