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Just saw neuro

Hi, I am new here and saw my neuro for the first time today after GP eventually referred me. It is a long story so I won’t bore you with all the details but in a nutshell, was diagnosed with ME 16 years ago (pain, fatigue, loss of hand sensation and control) this lasted abut two years then disappeared. Then about 7 years ago started having problems with bladder retention, hip pain and hand pain. Basically I ignored it thinking it would go away. Then I developed tinnitus and vertigo which was diagnosed as Menieres but not treated. Two years ago I moved and new GP referred me to ENT as vertigo worsening, they discovered I am moderately deaf now in left ear and required hearing aid, and also balance testing showed balance problems in right ear. ENT specialist said he was not sure why balance was ok in left and not in right when Menieres in left ear. Problems with hands,hips and bladder worsened, accompanied by pain behind my eyeballs, seem to all be bad at the same time ( as well as worsening of vertigo and deafness) them improve for short periods almost going away, then returning again. I also started getting severe foot spasms which wake me with the pain. Neuro today did the usual tests and I have very brisk reflexes all over, with clonus in feet. Right foot reflex also makes left foot reflex move. Have now been told need MRI of neck, blood tests and nerve conduction tests. He appeared pretty convinced it is MS but said that because the neuro tests he did were not conclusive he is going to have to start from scratch. he was a bit shocked that I had never had any tests other than bloods when I was first diagnosed with ME. So thats the short version. I have absolutely no idea how I am going to explain the while thing to my husband later. I am very scared and also really frustrated as I feel that up to now no one has actually really wanted to find out what is going on. There is no one I can really talk to about it all as I don’t want to uset my family and all my closest friends live the other end of the country thus why I am here in the forum. Thanks for reading this. Any advice would be very gratefully accepted. Hugs x

You 'll be alright Hun. It’s getting through the whole process of getting a diagnosis. For some it’s quick, for others it’s a long process( like mine). This forum is brilliant. It’s has helped me so much. There are lots of people here who are really informed and know what’s what. When I first came on herei was lucky enough to have someone take me under their wing till I got used to it. The good thing is you can talk about anything, from relapses of symptoms to bad days and bad moods and everyone understands :slight_smile: I hope you find this site as good. Don’t forget, the helpline is great too for a moan and a listening ear if you need to talk to someone. Welcome to the site, and I’m sure someone who’s more informed than me will see your post and get in touch. Xx

Thanks Beverly. My husband was OK, although a bit shocked. I think it will take a while for it all to sink in to be honest and, obviously, I still have a long way to go in regards to further tests and final confirmation. I hadn’t even thought about the helpline so thank you for mentioning that. Hope you are Ok at the moment. Hugs x