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.