Three Years Later .....

I’m back!

More than three years have passed since I first got symptoms that were ‘unexplained’. I get better for a while (months) and then seem to get bad again with similar symptoms each time. I’ve had a ct scan first which showed a cyst on my brain which I was told was fine and been there for years - two years later I had an mri which showed no cyst but did show virchow robins which I was told not to worry about.

Several appointments later, lots of being given the run around etc and I get to see the neuro again (different one this time) who said I didn’t have ms as nothing showed on the mri scan - he sent me for another one as six months had passed at this point and included contrast - again, I was told this was all clear. This time I really dug my heals in and told him that the fatigue and vertigo I was constantly suffering along with dizzyness was not normal and wasn’t getting better so got a referal to ENT for vertigo tests.

ENT sent me for balance function tests that have made me have dizzyness with vertigo attacks all day everyday (before I would have good days and bad but not everyday). I was told that I was on the borderline of having ‘significant’ differences between how my left and right side reacted to the hot AND cold water being poured in my ears.

After almost a week I had to go back to my GP as I wasn’t getting better and he started me on betahistine which have eased the dizzyness but caused tinnitus to get worse. I have episodes where I now wobble (as if I am dancing on the spot!!!) and shake, which feels like it’s my whole body. My legs go like jelly and feel like I have just run a marathon!

Do you think they were looking for the lesions in the wrong place? Could the balance with wobbles etc be an indication that they should have looking on my spine? I can’t stand being so knackered all the time, and the vertigo is seriously affecting my life now - sorry to be so long winded but this just seems to be going on and on and I’m getting no closer to knowing what is wrong. I know it can take a long time but I just feel like the neuro wanted to get rid of me as I had no lesions - I found out that he discharged me to ENT too which means a long wait getting referred back.

Thank you so much for taking the time to read all this and any help/advice would be seriously appriciated.


Hi Dolly,

Just quickly, 'cos my groceries are about to arrive!

In short, no, vertigo (sensation of dizziness) would not be caused by a spinal lesion. Physical problems with balance might be - e.g. if you have a weak leg, or difficulty coordinating the muscles for walking.

But if you actually feel dizzy, in your head, it can’t be coming upwards from the spine. If you can feel it in your head, it’s coming from your head, but could be either a brain thing or an inner ear thing (hence the ENT referral).


Hi Tina, thanks for your reply :slight_smile:

I did put in there that I … “I have episodes where I now wobble (as if I am dancing on the spot!!!) and shake, which feels like it’s my whole body. My legs go like jelly and feel like I have just run a marathon!”

I have had these before but they eased off about a year ago - they are back now with a vengence and make me look like I’m drunk! At 8am in the local shop it’s not a good look to have! lol Combine the wobbles with balance issues and you really do give people something to talk about :slight_smile:

The people who did the balance function test said that they felt this was more neuro even with their results - there was a significant difference but what was actually causing it wasn’t known.

It’s just really starting to get me down, really down. I totally understand that getting a dx will suddenly make everything better but KNOWING what’s wrong and why should at least give some peace of mind?

Hi Dolly, i have EXACT same thing, constant dizzyness/vertigi and the feeling that the fground beneath me is moving/vibrating/bouncing and my legs are weak and wobbly. I feel a shake/tremor running right through my body. i fall over frequently and even when sitting down I feel like i’m goint to topple sideways. i feel like i’m living my life on a bouncy castle (sometimes a roller coaster). having read the many posts on this forum and lots of othe MS info this seems to be a comon symptom for MS. But also there are a lot of other neuro conditions that have similar symptoms, I guess that’s why so many of us are in limbo for so long. i really empathise though, that symptom is one of the worst ones for me and really disrupts my life. i had to leave work early today because of it and nearly fell over on the way home because the ground felt so unsteady. Hope ypu get some help soon xx