I’m new here so not sure if im posting in the right place.
This is rather long and as I have a new neurologist appt in a couple of weeks, im writing this not only for your opinions but also for me to refer to as i know I’ll forget it all in the appt.
Approx 7/8 years ago I was told I had fibromyalgia with my symptoms of extreme fatigue, brain fog, pain, sensitive to noise and numb fingertips. However the rheumatologist wrote to my GP as he said it seemed to be more nerve related. I had a nerve conduction test to rule out carpel tunnel. Saw a neurologist who was quite possibly the rudest medical person i have ever met. He rolled his eyes at the nurse when i said i didnt work anymore due to my health issues (i used to work in compliance dealing with sensitive information) He said as i wasnt slurring my words it wasnt anything neurological and that it must be carpel tunnel causing my numb fingertips. Had yet another nerve conduction test.
Just got on with life winging it day to day as neurologist discharged me and the rheumatologist moved to a different area and wasnt replaced.
During the first lockdown i woke up one day and had the most awful pain in my left eye and couldnt see out of it. 111 said a&e and they sent me to the eye clinic. I was referred to my local ophthalmologist and he said my optic nerves were behaving suspiciously. On the 3rd appt, he referred me for a brain mri. The the results are attached.
My GP said he didn’t really understand the results and got me to do a 2 week blood pressure reading at home. All normal. Was left to it. A few months later i had episodes of feeling that my skin was crawling with tiny insects, i couldnt string a sentence together, regular vertigo and was having bladder issues. I asked my GP for a new neuro appt and they agreed. I was on the waiting list for about 16 months and saw a neurologist who ordered a new Mri. The only results i have of that one is: some bright areas, consistent with impaired blood supply.
I am due to see my neurologist in a couple of weeks in his M.S clinic. Does this mean i have M.S??? When i googled (i know) the wording of the 2nd mri, ‘impairment’ was not something that was mentioned on patients with M.S.
If anyone has managed to read this far, well done!
Apologies - I know this isn’t going to help much but I thinks it’s best to wait until you can get further info and opinions from your neurologist. I doubt if anyone on this site has the knowledge- expertise to answer your questions ( certainly not me).
One thing I do know from experience is that , as you have found, some consultants are a bit ‘challenged) in the customer relations/ bedside manners department.
I’m sorry you’ve had a rather tortuous journey to even get this far, and totally understand your concerns. It was 15 years in between first symptoms and getting official diagnosis in my case, so I get how frustrating the whole process can be. Unfortunately one has to have the patience of a saint when dealing with MS diagnoses.
As Hank_Dogs has already said, no one here is qualified to interpret or diagnose, that is best left to your Neurology appointment. However, I would recommend making a written list of bullet point questions of anything specific you would like answers to which you can take with you and refer to so that you don’t forget anything important; and/or take someone else with you to be your second pair of ears and ask relevant questions.
As for the Neurologist, yes unfortunately some of them don’t have any bedside manners. If he is rude again, perhaps ask him if he was born rude or does he have to work at it…! (Slightly tongue in cheek here); but there is no excuse for rudeness to patients.
Best of luck.
Echo what everyone else has said. Similar with me waited 12 years for a diagnosis and found all but 1 consult dismissive so far. But I suggest to go in with an open mind and maybe with someone. I have autism so if I go on my own I can’t explain what is happening well to someone I don’t know
I favour the old line from Only Fools and Horses. ‘Del boy’ says to a rude person on supermarket checkout ‘ Did you get your money back?’ She says ‘what’ to which he says ‘did you get your money back from the charm school because it obviously didn’t work’ and then walks off.
Wish I had the nerve and confidence!
Thank you all so much for taking the time to reply to me.
Thankfully, it is a different neurologist to the previous one, but the anxiety is there due to past experience.
I am writing a couple of questions to take with me. My issue is, because I don’t actually know whether he will lean towards a MS diagnosis or something else, I won’t be quick enough to ask the right question if he diagnoses something else. I think I am just overthinking it though, and need to calm and just get on with it next week.
I hope you all are doing well.