Not sure if I'm being diagnosed!...

New diagnosis and before diagnosis
1

I’m more than a little confused. Please forgive me if I seem ignorant, I have little knowledge on MS.

I was in hospital in December due to facial weakness. I woke up one morning and noticed that only half of my tongue was numb. Completely numb to touch, taste and hot/cold. After about a week it got worse and my eye drooped as did my mouth. After lots and lots of blood tests, neuro examinations and an MRI it was found that I had a 2nd bout of Bells Palsy (1st at 9 years old), a blood vessel pushing on a nerve and a possible Chiari 1 Malformation. They also tested for Lyme, but I haven’t heard anything back so I was told to assume I’m in the clear for that. They said they were going to do a lumbar puncture, but because they found the blood vessel on my MRI they would take it that it was that causing my symptoms and not do any further testing.

I was told that other than those things everything looked fine. Well earlier today I had a call from an MS specialist wanting to book me in for next week. It wasn’t mentioned to me during my hospital stay that MS was a possibility. I had no idea what she was calling for and asked if she had the right person. She said she had received a referral from my Neuro.

So my two questions are… Is MS something they ‘routinely’ screen for? My mum seems to think they just rule it out where as my other half (whose aunt had MS) thinks they have probably found something on my MRI or blood results after taking a second look…

After my own research of my symptoms (Dr Google!) MS kept popping up over and over again, but because it wasn’t mentioned I just wrote it off. But now I’m wondering if they have concerns and just didn’t tell me…

My symptoms include - The facial weakness, my eyesight has gotten progressively worse in a short period of time, fatigue, on going neck pain that radiates down my spine, tingling in my hands and toes, muscle twitches/spasms, recent depression and extreme anxiety and I had slight increase knee reflexes and one of my arms had a decreased reflex…

Any ideas? Thanks - X

2

I should add that I’m a 23 year old female if that makes any difference - X

3

Hi,

Nobody here would, or should, try to diagnose your problem from your symptoms.

You’ll be aware that the nervous system is horrendously complicated and so diseases in neurology take time to diagnose and a lot of similar conditions have to be eliminated before a final diagnosis can be made.

I wouldn’t want a neurologist making a snap decision based on just a few signs. I hope you don’t either.

It’s not pleasant being in this state of limbo while you’re waiting but try not to let your imagination (or Dr Google) dominate your life.

Best wishes,

John

4

As John says no one on here should diagnose. Until your Neurologist says those lovely 3 words ‘you have MS’ you are NOT diagnosed. I appreciate how damn frustrating it is; knowing something is wrong with your body but no learned person can or will give it a name.

I was diagnosed the same age as you; I’m now 67; and led a brilliant; full life. For you youngsters the answers not far away.

See A-Z of MS | MS Trust

Good luck