I haven’t been on here for a good few months, but thought I’d just post a brief update.
Last time I posted I was in Limboland with tests for MS etc being done. These were inconclusive for MS, but I still have no explanation for my brain lesions. My Neuro discharged me with a dx of vestibular decompensation and undiagnosed neurological symptoms. He told me that there is nothing that can be done and I will definitely get worse as I get older!
I refused to accept this, and my lovely physio was furious and so pushed for a referral to a Neurotologist in London, as one of my main symptoms is balance/dizziness issues. I had loads of balance tests done, and I apparently have permanent, significant and incurable damage in one ear which is causing some of these issues. They also discovered that I have some form of widespread neuropathy (I couldn’t differentiate between a very sharp pin and a blunt instrument on many parts of my body), so this now has to be investigated further as this is not their speciality. It is, however, definitely contributing towards my balance/walking issues as my feet/legs are not sending the correct messages to my brain.
I still have many other random neurological symptoms yet to be explained (the Neurotologist was not impressed with how the Neuro I saw locally had fobbed me off, and even less impressed with how my GP had recently told me they have no idea what’s wrong with me, never will have any idea and that I just have to accept I have disabling symptoms and get on with my life as best I can!).
So, I am currently awaiting an appointment back in London for an assessment before starting some Vestibular Rehabilitation Therapy that may give me some improvement with my balance issues. I also need to see my GP about the neuropathy.
I am also supposed to having an MRI of my lower spine as this has never been done and my lower-back/leg symptoms are becoming progressively disabling.
So, I still have one foot (albiet a partially numb, stiff and useless one!) firmly in Limboland, but at least I may be getting some help with my balance.
I am still not convinced that the balance issues are causing all my symptoms, and still feel there is something neurological going on. I just need to be strong and not give up.
Sorry for the essay, and thanks to anyone who has made it through this whole post!
Love to all still in Limboland xxxxxxxxxxxx