Some of you may have read my recent post saying that I had finally been diagnosed on Tuesday with permanent vestibular decompensation and told I did not have MS.
At this time, my Neuro had the results of all my recent tests, except those from the balance tests he sent me for, which seemed to have gone missing. Nevertheless, he went ahead and gave me the diagnosis without these results, based on everything else.
I had a follow-up at the balance clinic today, and it turns out that something showed up on their tests that ‘rang alarm bells’ and suggests CNS issues, for instance…yes, you’ve guessed it - MS. He also mentioned a tumour, but when I said I’d had a brain MRI he seemed to be more inclined to think along the lines of MS, especially as I do have multiple lesions, albeit, according to my Neurologist, non-specific ones. He also seemed very concerned when I explained about something my physio had noticed with one of my eyes on certain movements, and said this was also indicative of CNS issues.
So, I am now firmly back in Limboland after just over 48 hours of, what I thought as, a firm diagnosis!
The balance clinic have sent a copy of my test results to the Neuro today, and have put a note in with it expressing their concerns at their findings.
Oh well, it was good while it lasted!
It seems you may be stuck with me a little longer after all!! xx
Hi I am interested in the balance clinic findings. I am going for a gait assessment at a gait analysis laboratory, I wonder if this is the same thing. They are going to try and work out what is causing me to fall and stumble. Can I ask what the balance clinic did? Lou x
Hey pupledot, its weird how for so many of us this is the way it goes, get a dx for something, and then not, on to next person who cant agree. Its a merry go round (tho not merry me thinks), hang in there hun, each opinion will eventually join up into something. its amazing how neuro symptoms are so hard to dx!
Sorry you back in limbo but hope this time it leads somewhere. I was also dx with a vestibular disorder which is now apparently not the case, FRUSTRATING or what ???
Bah!! What a pain in the derrière ! I’m gutted as I thought you were all sorted : s ( insert swear word here). Right, well, welcome back chuck, even though I’m annoyed for you x. Xxxxxxx
I seem to collect possible diagnosis’/theries too. I am about to see 3rd neuro in 3 years. I just hope I get him to agree on one of the other theories rather than giving me another one to add to my collection!
Thanks everyone for welcoming me back into Limboland!!
Lolou10 - my Neuro referred me to the balance clinic for tests to try and pinpoint the origin of my balance problems. They did not do any gait assessment, so I’m afraid I can’t help you there. They are following me up as they have given me some exercises to do to try and re-train my brain, and also have some new hi-tech machines there that may help me with some more accurate answers…but nobody there is trained how to use them yet so I have to wait!
Bunnythecat - I know exactly what you mean. They guy I saw yesterday said this is a common scenario with neurological symptoms…you end up with the poor, confused patient in the middle, surrounded by a whole host of different specialists etc, who are all giving different opinions and contradicting themselves.
I feel totally drained, confused and frustrated at the moment, as I know many of you are on here.
Love and hugs to all my fellow Limboland residents xxx