More limbo dancing!!!

Wow Its been a very long time since I last posted because everything seemed to calm down and all thoughts of MS were put firmly to the back of my mind. Little bit of history first, basically in 2008 I went from having normal hearing to going profoundly deaf, this happened over the course of a year. I also had major balance problems and nystagmus, MS was mentioned to the point that a neuro and opthomologist was brought to see me and a lumbar punture was mentioned but not done. Anyway in the end the deafness was put down to some random problem with my immune system, I was lucky enough to get a cochlear implant and have basically tried to get on with my life. But, fast forward to now, Im having major headaches, which im now on beta blockers for, I keep ‘seeing’ shiny zigzags, this started in my peripheral vision but has now moved and when it happens it is straight in front of me. I know it sounds like a migraine aura but ive never had them before or during a headache. Ive also been getting pins and needles on my scalp, but only half my scalp, but lately Ive had them on the right side of my face! As well as that, i feel like cold water is dripping on my arms, to the point where the first time it happened I called my husband as I thought there was water dripping from the ceiling. Then on Saturday my vision went blurry, just for 2 minutes, but it really frightened me, my Gp is taking no chances and has referred me back to both opthamology + neurology. I asked him straight out if this could possibly be MS and he said replied that he didnt want to make me anxious but that it was a real possibility. Im trying to keep a really open mind, but being deaf isnt much fun and I could seriously be doing without anymore drama. Any advice, thoughts, all very much appreciated. Gogirl X

Hi Gogirl x So sorry you are going through all this! All you can do now is go with the flow & wait for your appointments and the barrage of tests! keep an eye on things & go to your GP as and when you need to - don’t take risks xxjenxx

I think that, by keeping an open mind and doing the sensible thing by getting your problems investigated, you are doing about all you can do. As kizzydane says, just try to go with the flow. Let’s hopefor no more dramas, as you say. The hearing loss must have been an awful shock - I know that even relatively mild hearing problems are very hard indeed to deal with. People don’t realise.

You know you can always come here for support when your patience starts wearing thin. Being in limboland can make a person feel as if he or she is in a bubble and cut off from the world - a feeling I am sure you are all too familiar with, on account of the deafness. Fingers crossed here that all will be well for you.

Good luck.



Hi from me aswell.

Saying try not to worry is a waste of time I know, because once the words are spoken the mind goes into overdrive.

As Jen says at least your gp is proactive in referring you and you now will have what at time seems an eternity of waiting for all the tests to be done.

Limbo is an emotional rollercoaster and after all your hearing issues that came out of the blue I guess you may be feeling here we go again.

You have come to the right place to help you through though as the support is ongoing and people take running water and half the body doing strange things as the norm.

Take care.


Hi everyone Thanks for your replies, yes in my saner moments, I think yep, just let the NHS machine roll at its own pace and essentially no matter whats gonna happen, I cant change no matter how much I stress and worry!! But sometimes I can feel the panic rising and I think back to what one of my ENT consultants said almost 3 years ago, he was convinced the hearing loss was part of something bigger which would only become clear in time. Alison, the deafness is horrendous, its just so isolating and totally takes away your confidence. The cochlear implant has been a great help, but its almost a double edged sword, cos family and friends think Im ‘cured’ and they no longer need to speak up or look at me when they talk! Not their fault tho, I wud’ve been the same before it happened to me, cos you just dont realise! Thanks again for the reassurance. Gogirl X