And the winner is (drumroll) Primary Progressive Multiple Sclerosis!
Definitely not Stress, Anxiety, Seeking Attention or any other variation of Psychogenic that I have had thrown at me over the last 9 years.
I’ve taken a lot of deep breaths and counted backwards from 10 way too many times, and finally - thanks to 4 new lesions showing up in my spinal cord - the Neuro had to eat humble pie and agree that yes, I do indeed have MS.
Illegitimi non carborundum! Welcome aboard - I suppose…
Finally your lesions have shown themselves, so you have some certainty now. Maybe they can line up some DMT’s for you now. By comparison, my lesions have been very coy of late, so I’m NEIDA = No meds 
Graeme
Dx is a bitter cup, but I hope that being vindicated sweetens the brew a little bit. The strain of being at odds with the experts and yet knowing in your heart that there is something ‘real’ amiss must have been such a drain on your resources. And for so long! I am glad that you have your dx, but just wish that the news was nicer news.
Hi I just wondered if you had 9 years of clear mri’s/tests before the lesions were found? I currently have many symptoms but all tests so far have come back normal 
Thea xx
Hi Tap1234
My first brain scans (2013/2014) showed 3 small lesions, which did not correspond with the symptoms I was having and were dismissed as ‘normal’ and unrelated. The first spinal MRI was clear. My subsequent MRIs showed no change until the latest at the end of last year which showed no change in the 3 brain lesions and 4 lesions on the spinal MRI. Between 2013 and last year my lumbar puncture came back as positive for oligoclonal banding in the csf; my visually evoked potential tests showed signs of previous optic neuritis, but there are no lesions on my optic nerves; the nerve conduction/evoked potential tests came back as normal.
try 31 years…I kid you not… I was treated like poop by the NHS … like it was in my head. I disengaged after about 8 years because my mental health couldnt take anymore. I decided to manage my up and down symptoms over the years myself… brain health=eat well, sleep well, exercise, rest . Manage stress by getting counselling to manage how I managed stress plus remove stress from my life that I could.
31 years on from 23 I relapsed badly 2 months ago. Such that I was taken to A and E and the consultant ( even though I could not walk without being flanked either side ) sent me home because and I quote " you are not dying"
My GP has now referred me to a neurologist and I have a 12 month wait. I have also been referred to pain clinic and phsyiotherapy.
I had a GP say to me they were not comfortable giving me baclofen because they were not a neurologist… They should try being me! Thankfully another doctor timed my dose by 4 - I’m now on 60mg of baclofen which is preventing pain = 9/10 level and pain killers
I have carers. We have been told to juggle the meds to work out what is best for us. We are literally doing what a neurologist should be sorting for us. It is a complete joke.
So when people jump the queue by paying for an MRI ( forgive me if you did but I am going to be honest ) I think it is a cheek. In the 2 months I have lost my ability to walk normally at all. I have to use my powerchair to go outside and am so bad that even through my antispasmodics I am still spasming.
I also have wet myself/am struggling to swallow which means I wake at night unable to breath/have full body spasms which take me to the floor/pins and needles and sensations for me are just part of normal life/tinnitus rumbles most of the time but always at night etc.
Yet I can not see a neurologist.
So I really related to your post and the way you were treated and the bitter sweet of the diagnosis. When they diagnose me I am going to go to my doctors… and remind him what I said to him which was…
When they find out what is wrong with me you will apologise.
And then I will consider suing him and the NHS. Not because they couldn’t work out what was wrong with me but because they told me… to my face… it was in my head… which caused me years of anguish
I wish you all the very best as you work out your way forward.
and thank you for your honesty in this post. It is helpful…
I didn’t jump any queue; in fact the MS Specialist believes I have had MS since I was a teenager, I just put the various random symptoms over the years down to other things - studying too hard, too many late nights, being clumsy etc.
It was only after a routine weirdness (thought I had a trapped nerve in my shoulder) became very weird and the sensation spread from my left hand, up my arm and to the rest of the left side of my body, that the MS diagnosis journey began. I consider myself very fortunate that my GP at the time was switched on and wanted to get to the bottom of whatever was causing my symptoms. Even with that it was several months before I saw a neurologist and it took 9 years almost to the day of my first neurology appointment to be diagnosed.