Hi, I'm new here. Maybe some of you guys have advice for me regarding NHS waiting times?

I’m Liam, I turned 30 a few days ago. This might be quite long so feel free to skip to the last paragraph if you don’t want to read about my symptoms hahaha.

I have been noticing for a few years now that my gait has been a bit off but I had been putting it down to weak core/stabilising muscles as my posture has never been great, in fact, it has always been terrible. I have hypermobility too which has always contributed to an awkwardness about my movements, ever since I was a kid. For around 3 years now, I will go through a couple of weeks every now and then where my bladder control is poor. I would go from not needing to urinate to about to wet myself instantly. Then it would just stop happening. I put this down to too much caffeine. The toes on my right foot would also go numb and a bit painful very occasionally too but it would always happen when I was sitting at my desk at home for long stretches, so I’d put it down to some kind of circulation problem or something.

Around 3 months ago I started experiencing some worrying symptoms that prompted me to see my doctor. The first thing I noticed was both of my hands hands went completely numb for about 20 minutes and were stinging like crazy. Then I started noticing that my vision was going blurry every now and then. Occasional numbness and blurriness persisted for about 3 days, then on the 4th day I woke up feeling incredibly weak and fatigued and my balance felt off. This fatigue was accompanied by all different parts of my body going numb or tingly; hands, feet, legs, parts of my face. My head would sometimes feel like it was expanding like a balloon or something. I was also getting these little biting pains across my body that would come in bursts, as if I had a scorpion in my trousers ahaha. I would also getting little stinging pains in my left eye, similar in nature to the ones on the rest of my body. There was one night in particular when I was trying to sleep where I was seeing all sorts of lights when my eyes were closed, patterns, circles, flashes. It was crazy. These symptoms persisted for about 3 days before tapering off and I then felt fine for a month, albeit still with the gait issues that I’ve had for a few years.

After a month of being fine, I had another little ‘flare up’ where I experienced the fatigue for a few days again but it was less severe than the first instance of it. Again, this was accompanied by all the weird sensory things. It only lasted around 4 days before I felt mostly normal again.
Since then I’ve been mostly okay, very occassionally I will experience numbness or the little biting pains, or weakness in my upper arms. My bladder has been fine ever since the first flare up as well, the gait issues are the only thing that is persistent and troublesome. Having said that, it isn’t so bad at the moment, I have a physical job where I do at least 20k steps, sometimes up to 30k steps per day, as well as cycling 20 minutes to and from work. And I don’t struggle with it. I do think I have drop foot though, as the distinctive marks marks on the front of my left shoe would confirm!

During all of this I’ve had a bunch of blood tests done, STD tests, I’ve had an MRI (without contrast unfortunately) of my head, neck and spine, all of which came back clear. I did specifically request a Lyme disease test as I received around 12 tick bites about 5 years ago that I didn’t get checked out, as at the time I believed that you have to get the rash from a bite in order to have Lyme. I now know this to be false. The lyme test hasn’t come back yet for some reason, so fingers crossed it is that, although to be honest with you, I’m quite convinced I have MS.

If I do have it, I’ve been thinking it is more likely to be PPMS due to the progressive nature of my walking issues, they’re definitely worse than they were a few years ago, as well as the occasional bladder issues. From what I’ve read these seem to be typical first symptoms of PPMS that often go unnoticed. There were days during those fatigue flare ups where I really got a glimpse of what it would feel like to be disabled and it was pretty terrifying, especially as a relatively young and active guy.

It’s confusing though because other than the gait issues, there does seem to be pretty obvious periods of remission, its just they only last for about a month. Which doesn’t seem to reflect what I’ve read about RRMS.

All I’m waiting on now to carry on with the investigation is the Lyme test results and to actually see a neurologist. The problem is, it seems like waiting times on the NHS are astronomically long. I haven’t received any word from the NHS at all about how long I have to wait or anything but from what I’ve read, I could be looking at a year or more. I don’t really want to wait until I’m disabled before someone will see me. I’m considering going private although I can’t really afford it, what would you guys suggest?

Hey, I’m in the same boat. I was referred 39 weeks ago, had my appointment rescheduled 6 times and now it’s been cancelled totally awaiting a new appointment. I’ve had a tough few weeks recently and looked at going private with an initial consultation at £300 and with scans etc would be near £1000 which I currently can’t afford. So at a loose end of what to do next?

Fingers crossed your symptoms do not worsen for you.

Find out what the waiting times are anyway. If, as is very likely, they’re awful, then do consider asking your GP to do a private referral if you can. You can do your homework to find out where your local NHS neurologist practices privately (if he/she does) and your GP should know the local scene and is worth talking to about who you should be trying to see.

By the way, please go see an optometrist if you haven’t recently been examined. I think that would be a really good idea to do as soon as you can. If you phone up to make an appt and tell them about those flashes and circles, they will probably fit you in pretty quickly to check all is well in there.

I am sorry that you are having such a worrying time.

Yes the Ophthalmologist, is a good person to see: when I had total vision loss in my right eye, due to optic neuritis and suspecting the cause to be multiple sclerosis, he wrote the referral letter for the attention of a neurologist.

On a different occasion, I was impressed the Ophthalmologist could even determine I suffered brain injury after a hemorrhagic stroke, just by observing my eye movements.

That is good to hear. A High St optometrist is can be a quick and easy place to start, though, and referral to a hospital ophthalmologist can be triggered from there if needed.