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Fed up in limbo

Need some advice. I am living in limbo land and have been for just over a year. Not seen a neurologist since January. Had a few test and just been told everything is reassuring as inflammation not changed since last MRI. Phoned a few times as symptoms changed. I now have to walk with a stick sometimes. When I phoned last time they got an MS Nurse to call and have a chat a few times. (She was very helpful). I went to my GP as I just needed someone to look me over and maybe send an email to neurologist to get seen a bit quicker. She tested me for B12 (which was one of the first things I was tested for and came back fine) the tests showed my platelets are slightly high. She also referred me to ENT as I have constant buzzing in my ears and every time I swallow I feel there is something in my throat. I read that these things can be symptoms of MS but the ENT says they are not symptoms of MS. I am now being treated for heart burn and being sent to see if I need a hearing aid even though I can hear. I have also to stress less. Are they symptoms of MS? I feel like I am going mad. I just feel nobody’s listening to me and maybe it’s all in my head it’s just stress causing everything. Sorry for long post just really fed up.

Hey Helen, if you fancy a chat to go through things please feel free to message me as happy to help and support you. Rob x


Being past from pillar to post sounds super frustrating. MS Charities in the UK can be super helpful during diagnosis. For a diagnosis in the UK neurologists use the MacDonald criteria. Or is it McDonald criteria 🤷‍♀️. I am not sure 🤔. Anyway! What did the MS nurse think? I hope you can navigate the system. All the best.