Help! I'm fed up with no results

Hey everyone, im at my wits end now, I was told back in January when I was admitted to hospital it looks like it’s ms after a mri a doctor rang and said it looks to be ms but you need to see the specialist, saw the specialist a month later for him to say he doesn’t want to diagnose anything yet as the legions are to small. Sent for EPS and another MRI, heard nothing for weeks, so I chased it up this morning and a letter was sent to my go and the specialist put me on a clinical 6 month appointment! Now after my first attack in Jan ( loss of vision and balance) I’ve gained some super powers, I drop things randomly, my hands just let go, i can spasm my muscles even when I don’t try and I’m great and being fatigued and sleepy by 10am. To find our today I have to wait till August and in the meantime carry on as normal?! How??!! Why do they need to wait for another attack??? Why does it need to worsen before anything will be done?? Thanks for reading my rant and if anyone has any tips on how I can get anyone to take me seriously would be greatly appreciated.

I really feel for you Kylla. My main worry when I had my appointment with my neurologist was he would not take me seriously. But he was fantastic and arranged for mri etc. It really seems like pot luck if you get treated well. But if it was me I wouldn’t let things drag on for six months. I would be back to my GP and letting him know how bad things are. Good luck in the future.

Sdid they give you an ms nurse? If so call her and she should bring it forwards if your symptoms are worsening. Otherwise, as guzlover says go via GP.

Hi Kylla, is this all with the NHS? My daughter got shoved from pillar to post for a different reason, not MS, on the NHS and I got really fed up with the lack of concern or urgency in her case so I emailed PALS directly with my complaint. My daughter was seen the following week and had her issues dealt with and resolved. It’s amazing what an impending threat/complaint can achieve! Hope you find your answers x

Hi ria yes that’s my next step, pals. I’ve also been back to my gp and she says they are going to push it forward, I will believe this when it happens. I haven’t been given an ms nurse no st as the neurologist didn’t want to diagnose me with ms just yet apparently until he got my results from second mri, as my legions haven’t got any worse it’s standard see me in 6 months jobby. It’s horrendous I suppose you just expect doctors to know what to do. My docs words was, we don’t know much about ms so I can’t really help you! I was thought what?!!! My faith in the NHS has quickly deteriorated.

It really is bad for them to say they don’t know much and just wait and see. Just doesn’t seem right. I think there is some research on here saying that even if it’s technically a clinically isolated syndrome at the and they won’t confirm ms that you can still take the DMDs? I really hope they don’t leave you hanging around for answers too long x

I get what you are going through chuck!

But the neuro is being cautious. He must feel he hasnt got enough evidence to prove MS fully.

It is often like this for many people. But I do think he is being cautious for a reason, so please dont jump into despair.

I`ve had neuro problems for going on 20 years and I still dont have a definite diagnosis!

Originally I presented as very typical PPMS, which progressed rapidly. I was needing a wheelchair part time within a couple of years.

I was diagnosed with PPMS for some years, then it was changed to HSP…but there is no proof of that either!

Hang in there, yeh?