Forum

Are they still looking for MS? Or something else?

Hi.

I have been experiencing various symptoms for the past two and a bit years. It started with dizziness, vertigo, tinnitus and hearing loss (initially diagnosed as Meniere’s disease, then undiagnosed again because the hearing loss didn’t fluctuate). I had an MRI at this point, to rule out acoustic neuroma. This was then joined by double vision and a ptosis (both due to weak eye muscles in one eye, I was told). Since this time I have also experienced a lot of fatigue, extreme at times. At my worst I was collapsing into bed in the afternoon, now I can usually manage until 8pm but when the exhaustion hits it’s like walking into a wall - all of a sudden I go from normal to exhausted, rather than a gradual decline to sleepiness. I sleep for 12-14 hours, and I’m still knackered when I get up.

In January I started to experience pins and needles in my feet and hands, and also my face. These started as just tingling, then progressed to prickling. I went to my Doctor at this point, and he referred me for another MRI. Then last week when I was woken in the morning, I had a bit of a “funny turn”. I was extremely weak - not able to grip with my hands, not able to stand or walk un-aided and slurring my speech. My husband took me to hospital (understandably worried!) and I was there for two days. During this time three different Doctors mentioned that they were looking for MS (they also did a CT scan to rule out a stroke). I was told I was going to have a lumbar puncture - two separate doctors explained the procedure, and I signed the consent form, then they changed their minds and said they’d do an MRI of my spine instead. I started to feel better on the second day, and was able to walk again (albeit unsteadily at first) and the neurologist who was looking for MS said he’d do an MRI of my head, and if that was normal that he’d let me go and call me back for another MRI of my neck. The hospital was suffering from an outbreak of Noro virus, and he thought it was better that I went home and came back, rather than staying and becoming more ill!

Having been excited at the prospect of going home (the hospital had a “no visitors” policy, due to the virus) I didn’t listen properly to what the neurologist said. He said that the MRI looked normal, but I rang the hospital and they have me down to come back for an MRI of my neck. Are they still looking for MS? Or if not, what else might they be looking for?

Sadly the pins and needles are still here with a vengeance. In fact, they have got so bad that my feet are aching in bed and it’s affecting my sleep. Since I need 12-14 hours a night that’s no joke! I know it’s said that many other things mimic MS, but I’m not actually sure what those things are, or how they’re diagnosed. I’ve had numerous blood tests, I’m not anaemic nor do I have a B12 deficiency (I’m also not pregnant!)

When I get my appointment through I can ask the neurologist (and will), but the hospital said they’d write within a month, so any ideas would be really helpful in the mean time.

Thanks!

Oh dear, you have had a scary time hun!

I think your neuros will be looking for MS, amongst other things.I was tested for a long time…years and was mis-diagnosed with PPMS, but it turned out to be something else, with similar symptoms.

I know how easy it is to latch onto things, but hang in there and let the docs do their job.

luv Pollx

3 Likes

Thanks for the reply :slight_smile:

I will keep my fingers crossed that they do write back in the next two or three weeks. When I was referred for the first MRI back in 2013 I was waiting and waiting for the letter - when I couldn’t stand it any more I rang up the hospital and found out that the wait was five months! At that point I begged my GP to refer me privately, and he did some magic which got me seen (on the NHS) in a couple of weeks.

It’s horrendous reading about the time it takes people to get a diagnosis. I feel so inadequate at the moment! I spent the first forty or so years of my life as healthy as a horse, and the past couple of years have felt like I’ve no life left. I know I shouldn’t complain, and that there are many other people with far worse problems than mine. I am lucky that I have a husband who cares for me - does the shopping and the cooking, drives me around and does pretty much everything around the place. Then I repay him by going to bed at 8pm, and not waking up until he’s been up a couple of hours already.

I feel like I’m letting him down by being so rubbish, and bizarrely it would feel a lot better to have some kind of a diagnosis. On one hand because at least I’d feel like I’ve got an excuse, and of course also because it might then be possible to get some medication to help.

Thanks for listening, it’s good to be able to talk about it. I’m rubbish at sharing my feelings in general, so apart from telling my supervisor that I’d been in hospital for a couple of days (I’m working from home) and swearing him to secrecy, I’ve not really let on to anyone how bad things are. I just decline offers to do things in the evening and leave it at that.

Sorry, that sounds like a right old moan!

1 Like

Not a moan, just someone who is fed up.

I’m often in bed before my eldest. His bedtime is 9, and I’m often so wiped out I’ll have to go to bed at 8:30. He finds it very funny. My hubby gets a chance to watch TV without me, so lots of scary films and football for him. Not sure if that really makes up for the lack of a sex life though!

I went to my GP a couple of years ago, and asked to be checked for anaemia, as I couldn’t figure out why I was always so tired, and why I was absolutely exhausted by 8 in the evening, to the point of no longer being able to talk. Blood tests came back OK, and he told me that I was in denial and was actually depressed. Don’t see him anymore!

Can’t answer your question though, about what they are looking for. I was told my symptoms could fit any one of 400 different conditions, some central, and some peripheral. On top of that lots of people never get a diagnosis, or are told that it’s a functional issue. I too am desperate for a diagnosis, just so that I can prove I’m not making it all up. (My mother inlaw thinks I just have sciatica, and that I’m being a drama queen about it!).

We just have to play the waiting game the best we can.

Take care

Paula

1 Like

Thanks Paula, I know just how you feel about wanting a diagnosis so that you know you’re not making it up! I am lucky, in that those close to me and my Doctors do actually believe that there is something wrong, albeit they aren’t yet sure what. It still doesn’t stop me wanting a “label”!

I’m taking comfort from Crazy Chick’s comment that MS will make itself known eventually.

Are you undergoing any further tests to help them along towards a diagnosis?

1 Like

Waiting on my referral to neurophysiologist - not really sure what that means, but I think they’ll do the nerve conduction tests to see if it’s a peripheral problem or not. Also waiting on neuro to let me know what the incidental findings on my spine MRI are. Brain was clear, but he needs to discuss the spine findings at a multidisciplinary meeting, which I’m assuming means that it’s shown up a non-neurological issue. I’d really hurt my back the morning of the MRI, so I’m hoping it’s just that.

crazy chick is right. If it’s MS I have it will show up eventually, but right now I’m happy to take MS off the table, and focus on getting my body fit again!

1 Like

Fingers crossed that the referral comes through quickly for you, and that they find out what’s causing your symptoms so that you can find out what needs to be done so you can do just that.

xx