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Don't know what to think!

Hello,

Over the last couple of weeks I've looked at this Forum alot, and you all seem friendly!

The story so far:

  • 3 years ago my face (left side) went numb. I was treated for Bells Palsey but it persisted. It comes and goes, maybe numb for a day or a week and then it will go for a week/month and then its back. Sometimes it tingles, feels like something is crawling across my face. I had an MRI and LP. All clear 3 years ago. This numbness has persisted and has spread to the whole of the left side of my face. Now my tongue tingles (left side). When my face is numb I feel rotten like I'm coming down with something. During this time I was bounced between EnT and Neurology.
  • My right foot went dead about 2 years ago. Put this down to back problems.
  • My hands tingled - investigated for carple tunnel. Found nothing.
  • 6 weeks ago I develpoed Optic Neuritis. Saw a neuro quickly (afterall, I had been to neurology several times before). I was put on a 5 day course of IV steroids. Thankfully my eyesight is returning. A thoroughly awful experience.

So now I'm waiting for MRI scan with contrast and probably a LP.

My question is, why didn't anything show up 3 years ago?, Could my numb face be RRMS ??? wouldnt it have got much worse?? I'm 44 by the way

What else could it be?

Hello, and welcome to the site happy2

 

There are actually quite a lot of things that can cause your older symptoms, but the optic neuritis (ON) does rather narrow the field. ON can occur on its own, but a lot of people with ON do get or already have MS. There are other conditions it can occur in too though (e.g. AMN and NMO).

 

If your ON is a sign of MS, then yes, your numb face probably was your first attack. Why didn't it show up on the MRI scan? There are several possible reasons. First of all, NHS MRI scans are usually pretty rubbish - they only show up larger lesions well. Secondly, Bell's Palsy is caused by damage to one of the cranial nerves (can't remember which one off the top of my head, sorry). The cranial nerves run between the brain stem and wherever they are responsible for, and they aren't very big. What's worse, standard MRI protocols are not very good at picking up lesions in the brain stem. So, small area of damage + possibly in an area that's hard to scan = difficult to see damage to a cranial nerve. Add the rubbish NHS scans and it gets even harder. Thirdly, some people seem to develop lesions slower than others and some have a better ability to repair / limit damage so their lesions can be smaller. It's not uncommon for people who have clear MRI scans to later be diagnosed with MS, when there are visible lesions. About 10% of people with definite MS have clear brain scans (although most of these will develop visible lesions later on).

 

Wouldn't it have got much worse? Not necessarily. MS is massively variable so within our ranks we have people who sadly have to be cared for 24/7 and are restricted to their bed, but there are also lots of people walking about quite happily out there without even knowing they have MS because it is so mild. Of course, the majority of us lie somewhere in between these two extremes. Then you've got the fact that every symptom we get seems to behave differently too! So some symptoms come and go, some stay and don't get worse, some stay and progress. Plus, they might be anything from very mild to very severe.

 

I hope this helps!

 

Let's hope the neuro can get to the bottom of it this time.

 

Please let us know how you get on!

 

Karen x

Karen

 

Thanks for your reply, really appreciated. The whole thing with my face has been really frustrating. Maybe i haven't explained it well enough on my 2 or 3 neuro appt's. My face feels like I've been to the dentist, it used to be localised around my cheek bone, but now its the whole of my left cheek, top lip, bottom lip, inside my mouth and tongue. When its numb, I feel rotten (tired, like I've hit a brick wall). About 6 months before these things started with my face Ihad surgery on my spine (lower).  Once again, years and years of chronic back pain (fell off a horse when I was 16) put up with it until I couldnt any longer. Transpired i needed urgent surgery. I'd seen the consultant the week before I ended up in A&E who told me to stop maoning!!!!! Looking back, I dont think I convey how bad things are, and then doctors dont take it very seriously. I wonder if this is the case with my face. I've been off work for a few weeks now (since the ON started) and I've had time to think really. When my face isnt numb I feel great - work full time, 2 kids and a husband, lifes great. Then my face starts, and I feel awful, can't think straight, tired and lifes not so great!!

 

I've been rearching alot on the internet, not sure its doing me much good really, full of weird and wonderful stories, which confuse and scare me! One  thing I have looked at is the between MS and spinal injury. When I fell off the horse I actually broke my back (full gallop and I flew off!with a big bump). However, I didnt know at the time (it happened a week before my exams), spent the week in bed and then got on with things. My poor mum is mortified now. So this injury was untreated and I literally had 20 years of chronic back pain, exacerbated with 2 pregnancies. the problems with my face started 6 months after the surgery to remove the disc pressing on my spine. So I wonder......?

 

Well, I'm going to stop trawling the internet and stick to this site instead. Thanks again for your reply.

 

Sue

I would have thought that if the spinal surgery was going to cause sensory problems in your face, it would have done it straightaway. I could be wrong of course! Perhaps something "shifted"? Saying that, I'm sure they will see if anything has changed on your MRI.

 

It's usually best to give up the search for "why?" when you're looking at MS because no one actually knows the answer and you can literally drive yourself nuts, especially with some of the crackpot ideas on the internet! The best thing in my opinion is just to accept that, sometimes, life sucks; and on this occasion it's sucked for you :-(  You didn't do anything wrong. No one did. It just happened. Some strange quirk of genetics, environment, vitamin D3 and Epstein Barr virus maybe, that no one could have predicted.

 

The facts that your face problems coincide with fatigue and that they come and go are important - make sure you tell the consultant. Your face numbness description sounds fine to me - let's hope that this time they take you seriously, and can put everything together to get you a diagnosis. 

 

Karen x

Karen,

 

Thanks for the reply. Just one more question: I've had a terrible taste in my mouth since yesterday (it happened 3 weeks ago and lasted for about 5 days - to be honest I put it down to the steroids). Well, its back. Utterly vile. metallic. My tongue is tingling and my bottom lip is numb. I feel the numbness around my mouth has been 'coming on' for about a week. Have you any experience of this?

 

Thanks

 

Sue

I've had something similar - it turned out to be a reaction to amitriptyline (which I had to come off).

If you aren't on any meds, then I'm afraid I don't know, but you should certainly get it checked out with your GP.

Karen x