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Not sure what I have!

Just a rant please! Had neuro symptoms for years, as well as a lot of other issues. No diagnosis, but my neurologist writes MS when requesting investigations etc. I have asymmetrical rotary nystagmus, loosing site in some outer areas. I have dysphagia, a hyper mobile bowel with hypo-motility. I have intermittent BPPV. I am 75-80-% deaf (congenital). I have frequent pins and needles and areas of "pain". Some of the pins and needles are now more like "waves" this feels like a throbbing rate than normal randomness. I am hypermobile, I have jaw problems. I have Raynaud's but if I get too hot I feel ill! I have to walk with a stick as I don't have good balance, and my foot drags (although my walking has improved through perseverance I think!!) Sorry about all this - I think I feel like this because I broke my clavicle in Sept and it still hasn't healed and I have osteopenia!! Any advice please - I still have a mortgage and I am feeling fed up!

@vickyeaston , you have my sympathy. It isn't easy when your body is playing you up and the medical profession aren't able to give us a formal diagnosis. I am assuming the your Neuro has a suspicion of MS, but this does not satisfy the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) for making a formal diagnosis. I would love to give you a diagnosis, but I don't believe you were expecting it. What I would say is that some of your symptoms do suggest MS, but these symptoms also present in various other conditions too. So, it's a cast of eliminating the probables and investigating the possibles. Regrettably, our bodies are pretty complicated and our Doctors aren't magicians. We understand all this, as we have members who have similar stories lasting over years. So, your rant is fully justified.


Diagnosis in MS frequently takes a long time frustrating people just when they are trying to manage the symptoms! After being on this forum for a while I feel fortunate that I was quickly referred to a neurologist that was a MS specialist and knew just what to do and what we could do about it...which was precious little 15 years ago! now we have many DMTs to choose from and much better information and tests. If your neuro doesn't seem to be a MS specialist perhaps they can refer you to one that is? and you should be asking for the tests/procedures for a proper diagnosis so you can get headed the right direction- I'm not sure what country you are in- I'm in the US and have found a lot of Dr Boster's videos he has on You Tube very helpful. Especially this one on diagnosis- https://www.youtube.com/watch?v=0csvVXatlFo&t=32s Good luck! I find a lot of information