Hi all,
i have a working diagnosis of MS. I recently went to see my neurologist to get the results of a head and neck MRI. Both were clear which was quite a relief, however my neurologist was awful. He said three times during my consultation that I should get a second opinion as unless there is something on the MRI he wasn’t particularly interested! He also said that as a lot of my symptoms are sensory it wasn’t “his” sort of neurology and although he could do other tests and investigations that wasn’t his thing. He just told me to live my life (i wish!!) and go back in November to see how I am. He said that my tingling, numbness, buzzing and tremor weren’t consistent with MS.
I realise if there is nothing on an MRI MS cant be diagnosed and expected it to be honest, as two people I know didn’t show lesions until their third MRI - but his lack of compassion, sarcasm and lack of interest in investigating what the hell is wrong with me was awful. As i walked out he said “there are thousands of people like you walking around undiagnosed”.
I am currently in Spain on holiday and have an appointment with my GP when I get back, so will ask him if he thinks another referral would be best - he said if my scan was clear the neurologist would send me for Lp and Ev’s!! I have also decided to ask him to test for RA, Lymes and anything else he can think of - even if its just to exclude them!
i just wanted to rant really as being here in a lovely villa is relaxing and helping me chill but giving me lots of time to think! Any thoughts or advice would be great.
Thanks. Carrie x
Hello
Who said you have a working diagnosis of Ms ? As your neck and brain are clear , I am not surprised that you have been sent away . I really think you need to live your life and to be honest , you will have to wait a period of time anyway before an mri would show anything . If you still have symptoms in a few months I would get referred again by a gp.
I don’t think you have ms , and if you don’t then you can search and search and not find the answers you want .
I don’t think the neuro should have been sarcastic /rude but they do see a lot of people who insist they have certain disorders , and it must be trying at times ( mind you they get paid well )
i think you should enjoy your hol , it’s raining here :(. Anyway , whatever happens things will be okay so try not to worry yourself ( been there , done it)
kat x
Hi Kat,
My neurologist said i have a working diagnosis of MS and that there was something very wrong with my central nervous system on my first appt with him following a neurological exam - i guess thats where i might be a bit confused. I dont need to be re-referred as he has not discharged me and i have a follow up appointment in November.
I have never insisted I have MS, nor do i want it. I am thrilled that someone apart from me thinks i dont have it (could you let me know your reasonings for information for my GP visit?) but i have something wrong with me, hence why i am sat in an air conditioned room in our villa rather than outside by the pool with my family.
That was part of the point of my post - i would rather it was something else that perhaps mimics MS that my GP can help diagnose.
I desperately want to live my life but that life is a shadow of what it was a year ago. Things wont be ok ever again if I stay physically like this. Still, I’ll do my best.
Thanks
Carrie
Oh sorry Carrie, I see! Hmmm then yeah I can see what you mean. I thought you didn’t have ms based on the clear scans, also the symptoms are sensory so I guess could be something else…hopefully not ms! But the neuro exam suggests something is up so you are right, I don’t think the way he left you is okay to be honest. I think you should tell your gp that he said you have something very wrong and perhaps get a sooner app or to someone else ,a second opinion is needed,These worries are not nice at all. I have seen a private neuro , it is worth it maybe take a copy of the letter explaining the neurological deficits and that you have clear scans. They may put your mind at rest, I think you need to know what could be. Havn’t helped at all really. Sorry for the confusion!Hope you get answers soon!