Last reply 2 months ago
Hello, I'm new here..

Hello everyone, as the title suggests I’m new here. Although, I’ve been lurking for some time. I got diagnosed with MS last week after a lot of barking up the wrong tree. I’m a Police Officer and in 2016 I decided to apply to transfer to firearms. The fitness test is a bit harder for this but didn’t worry me at all as I knew I could pass it – or so I thought. I discovered that I simply could not run any longer. I was in the Army some years before I was in the Police and had never struggled with running at all so off I went to my GP. Long story short, after four years doctors have investigated poss exertional compartment syndrome, various trapped nerves and spinal stenosis. MRI rued them all out. I gave up at one point when my GP told me to go away and live with this foot drop as it clearly wasn’t cancer and the NHS can’t waste money on more investigations. I got another referral to a neurologist and have had MRIs of my head and neck and in both scans there are lesions. I was supposed to have a lumber puncture but seem to have escaped that as they have given me a diagnosis without. Phew! I’m keen to get cracking on doing something about it now. I’m still very much frontline duties at work and I want to stay that way for as long as possible. They’ve stopped me driving on blues and no public order for now. I can live with these changes though. My symptoms are mild for now, left foot drop, weak left leg and an almost constant eye twitch which is very annoying. Anyway, that’s me. hello all I hope you are well 👋 👍

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pixiedragon
2 months ago

Hello @thorpee.
Welcome to the site I’ve only started posting recently too as I was the same spent years arguing with GP. At one point 1 year before I got my diagnosis I asked the doc if I had MS and getting a lovely reply of “no no no the symptoms don’t match”. Didn’t help that my starting symptoms was pins and needles so not as if she could see my issue. I have noticed a lot happen this way taking ages, a lot of wrong answers and but the test came back clear. Never good and it’s not the nicest in conditions but at least you are on the right track.
I’m guessing your first lot of mri’s were on your legs or other non ms related scans.
Other than that keep safe
Pixie


thorpee
2 months ago

@pixiedragon hello there, yes I should have said. The earlier MRI scans were of my leg and lower back and when they came back clear the neurologist discharged me. I went back to the GP and he pretty much told me to go away. Only when the weakness got worse I had to go back and insist. When the GP shrugs you off and you resort to Dr google it’s terrifying as the symptoms are so varied and common to so many other problems. I don’t know about you but when I read the letter and the diagnosis was in black and white half of me was gutted to have this but the other half was happy to finally know my enemy and determined to make things better.


pixiedragon
2 months ago

@thorpee hello again. I was asked by my neurologist why I wanted the diagnosis (was diagnosed with CIS (Clinically isolated syndrome)before) I replied I don’t want to wait any longer, if I know I can get on with my life, I could understand, I could get the help I need.
When I got the first diagnosis I was plainly told at work just tell us when u get the diagnosis, it infuriated me as I knew I had the symptoms now, lucky didn’t have to wait long, I was glad to get the final diagnosis and now work can’t bend over far enough for me. Glad that your work is more accommodating and sorry that you didn’t get the department you wanted.
Dr google has its bad and good sides, but if it wasn’t for dr google I would still be trying to get help as the doc was about to send me on another wild goose chase and probable have got a complete different outcome that is actually other of my ms symptoms.
My life lesson with all this…. try to keep laughing, it usually stops the tears.


highlander
2 months ago

@thorpee
Hi and welcome to the club.
I felt the same as you once I was given my diagnosis…. great at least I can’t be labelled as a malingerer anymore, I’ve got a name for this thing and it’s real.
Have you been assigned an MS Nurse yet!
You’ll find they are your go-to person when you have odd symptoms like eye twitching and numb hands and wotnot…
Ask to be referred to see a NEURO physio they’ll have a few exercises and tips to help with your foot drop.
Under your post above you’ll see some boxes relating to some of the things you mentioned click on them and it’ll take you to other posts made about it.
Feel free to ask anything you like we’ll try and find an answer one way or another.
Lastly and cheekily can you lot learn to pick up your own brass when you’ve finished on a range?
Or I’ll have you changed for littering!
Welcome again.


spunky
2 months ago

Hi @thorpee
I had a constant eye twitch as well and have 15 units of Botox injected under my eye every 4 months (by a neurologist) and no more twitching! I know how annoying the twitch can be and Botox was a life saver! Wishing you the best.


watsoncraig
2 months ago

Hi @thorpee
My GP just wanted to give me Happy Pills (Prozac) that was until my (nurse) wife saw the proscriptiion and said No. Complained to the practice and was given a Neuro appointment who sent me for a CAT scan which led to a more detailed MRIand 2weeks later a diagnosis of PPMS! Like you I have avoided a Lumber puncture and afte,r a long time of nothing I started Ocrevus in February.
Got a good fiend who is a Superintendent.


thorpee
2 months ago

Thanks all for you replies. It’s interesting that everyone has had similar experiences with the GP. I only got a second referral to the neurologist after a complaint too. I’m speaking to the nurses tomorrow so I’ll ask re the eye twitch, as it really is annoying. The neurologist suggested a FES for the foot drop but I’m not sure if it’s for me as, fortunately, I can go some distance before it comes on – I’ll try anything they let me though. I want to stay doing my full duties at work for as long as I can as desks really aren’t for me. @highlander Its been some years since Ive had to pick up brass or rather kick them in to the fire trench, long grass or any other out of sight out of mind place 😂


dominics
2 months ago

Pretty sure you are the first AFO on the forum!


dominics
2 months ago

@thorpee A while back I went through similar (no H+Ks involved!) With TVP. Have send you a friend request so we can PM.


thorpee
2 months ago

@dominics I’m not an AFO now, the beep test was not to be. I have been in the past but that was before any of this. I fully expect them to pull my taser ticket when they get around to thinking about it though.


itsmewithms
2 months ago

Many in this group had a long road of diagnosis. Thankfully mine was pretty short once I had a symptom serious enough to really investigate. Then the little symptoms over the years made sense. It also set me up for treatment which slowed progression. It also helps you make some life plans. I certainly tried to pack as much into my “early years” of diagnosis, pay down all debt in case I couldn’t keep working and when we built our new house we incorporated design elements to make it easier to live in if my condition worsens. Of course it is important to have a diagnosis of something like MS…


superman
2 months ago

At least now you have got a diagnosis without the dreaded lumbar puncture, whatever you do do you have to accept you have multiple sclerosis carry on and stay strong.

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