Waiting to be diagnosed

Hi I’m new to this site , and really looking to seek advice from people that have already been diagnosed with MS . I believe I have suffered from an illness for 25 years now , I apologise now for my long introduction but want to explain everything to see if anyone can give me some advice.
When the illness first started it made me dizzy and might affect me for a couple of weeks, but then without warning would stop , and I might not get the same symptom for a year or so . But unfortunately for the last 4 years ( I’m now 46 ) I’m suffering really badly with an illness , I have been through a number of tests and also was under a neurologist, I have had an MRI scan but it came back clear so my neurologist discharged me . But I really believe I may have MS , because I have all the symptoms, but I’m struggling with the hospital and my doctors to help , as I have taken myself to hospital numerous times after not been able to walk properly, but my observations and bloods always come back clear and they send me home making me think I’m wasting their time and it’s all in my head , which is so frustrating.
My symptoms at the moment are
Blurred vision
Sometimes unable to walk
Jerking & twitching
Head aches
Slurred words or forgetting what I was about to say
Pins and needles in my arms and hands
Muscle tightness in my arms and legs
Numbness of my bum legs and arms
And most recent a vibration sensation when I tilt my head forward that goes across my chest and down my arms , sometimes it’s so server I drop items from my hand when it happens.
As im totally aware I might not actually have MS and one doctor did mention FND , im really struggling to get the correct help , as it effects my daily life now and can’t work, as im self employed I can only work on the days im feeling good , which isn’t much at the moment, and because I can’t work it’s effecting my mental health massively. Is there any advice people can give me in moving forward to getting a proper diagnosis, and is it possible to still have MS even after my MRI came back clear ?

I’m not a doctor and have no expertise whatever, but I believe that the scan results of most people like me who have had MS for 20+ years are not a pretty sight. All those years, all those lesions, all that damage, all that shrinkage. But I might be wrong about that. What I can say with more confidence is that my scans are not a pretty sight!

If, after all these years, the medics don’t think you have MS, then it seems to me (and, I am sure, to you) that there is a pretty good chance that you don’t have MS. Which doesn’t mean there’s nothing the matter - obviously there is. It is interesting that FND has been mentioned. I dare say you’ve looked that up on neurosymptoms.org - an excellent website. Of course I’m not suggesting you have that - I have no idea what you have - but it’s always worth doing one’s own research on possible alternative explanations for what might be making your life so difficult. The thing I like about that site is how good it is at making the point that FND is NOT ‘all in the mind’ - well, no more all in the mind than MS or any other disease anyway.

Did your neurologist get a lumbar puncture for you?
These can help to diagnose various conditions.

Hi thank you for reply , I haven’t had a lumbar puncture yet , but have asked my doctor to see if I can have a number of different tests , but after my neurologist discharged me , I’m struggling for my doctor to help , as he keeps saying I need these tests to be done through the neurologist not him , so now I have had to go back onto the waiting list for my neurologist which I know is usually 6 to 8 months waiting time .

Thank you so for taking the time to reply, I really do appreciate your help. I’m going to give that site a look . This is why I came on this site to ask questions as my doctors never seem to talk to me , and I wasn’t sure if they could have missed something from the MRI , but after your reply it sounds like it’s very visible from an MRI if I did have MS . I’m sure I will get the answers and help I need eventually, it’s just frustrating as your probably aware that these things take ages to get sorted .

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