Last reply 2 years ago
MS diagnosis.

Hi all, new to here but could really use somega advice from people who are experienced!

Have suffered from pins and needles/tjngling/numbness on and off for years but it was never severe enough to cause me worry (daft I know). I lost the vision in my right eye Christmas day ’16 and after weeks got diagnosed with optic neuritis- as this began, tingling and numbness has got worse. If I walk for any more than a couple of minutes my entire body will tingle for an hour or so, lhermittes sign has returned and hands/feet/arms will go numb for half an hour at a time.
I had MRI 2 weeks ago and GP gave me a brief explanation of the results saying there have been some ‘changes in the brain’ which could be suspect of MS and if he had to make a diagnosis from my other symptoms and the scan results he would draw that conclusion. The neurologist want to see me for further tests, (which I don’t know) but that won’t be for up to 8 weeks. I’m going out of my mind not knowing for sure.
Has anyone else had any similar experiences or light to shed on the matter!? I don’t want to be told I have MS but if that’s the case I just want to know.
Also, I have to pee every 5 minutes even if I haven’t had a drink, could this be related?

Thanks in advance.

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2 years ago

Your symptoms do sound familiar to ms but as @stumbler will tell you it could be so many other things that’s causing them.
It’s hard to say just relax and try and be patient when you are worrying about this. Not to put your GP down but they’re not a neurologist honey and they don’t have the day to day and fundemental experience and knowledge to say that they would pin it on you having ms . That’s your neuros job and he has to do the other tests before he can know for sure what’s causing your symptoms. Try your best to relax, keep note of any new symptoms you may have and I wish you all the best of luck on your upcoming tests . Let us know how you get on. Xx

2 years ago

It isn’t unusual for it to take time – certainly did for me. It is really tough but try not to worry too much if you can because if (and @feeblefee is right, it could be something else), if it is MS, the stress will make you feel worse. Take care x

2 years ago

Hi there, it’s worrying when the potential of MS is raised but the GP doesn’t have the knowledge that a neurologist has so can’t really say what’s going on. The GP could prescribe something for the sensory symptoms you’re having if they are getting worse. Something like amytryptiline or duloxetine or gabapentin. These come with their own side effects but one of them might work for you. It can be a long road to diagnosis and your stuck in limbo land until then which is very frustrating. Can you ring the neurologist secretary or appointment team at the hospital to let them know you’d take a cancellation if it came up? Might get you in quicker if you can do that.

Make sure you keep a diary, as mentioned above, and include your previous episodes. If everything is written down then you won’t forget anything.

I had two Mei scans and a lumbar puncture before my diagnosis. The criteria for diagnosis are called the McDonald criteria which can be found on google. They just show it’s not a straightforward process unfortunately.

Finally ref pee – it could be because you’re not emptying your bladder fully even though you think you are. I have this symptom and sometimes can’t feel properly to tell whether I’m really done! I stay sitting down, relax for a few minutes and try again. Sometimes I go again sometimes not. Give it a try!

I know it’s hard to wait but you should hopefully get some answers soon. Take care and keep as calm as you can- I don’t mean to sound trite because I really do know how hard it is to wait. Hopefully you get a cancellation….

2 years ago

Your further tests should probably be non-invasive. I had a lumber puncture performed about a decade ago, but I’ve heard that they no longer need to do this? But if they do, it’s not really a big deal, they numb the part of your back that they put the needle into – it’s not like being stabbed, or anything! Please note, it’s NOT the end of the world if you do have MS. I felt like that when I was diagnosed about a decade ago, spent a few months waiting for the other shoe to drop….. which it didn’t……. and life just continued as before…..

I had tingling and numbness for DECADES (early teens) before diagnosis in my thirties after a major attack – which included blindness in one eye. The point is, if you got the numbness/tingling sensation, and then it went away, of course you’d ignore it. In my case, thinking back, I probably assumed every experienced those sensations.

Can’t stay to chat, I’ve got a spin class then a yoga session to go to. 😉

And if you want to imagine what that would look like….. imagine Rab C Nesbit in a gym kit, and you’re close enough

PS…… to all MS sufferers. If you can, take up yoga. Don’t think ‘hippy’, think intensive psysiotherapy. Might hurt at time, but benefits last for days, weeks…. got rid of a lot of aches and pains with this, it’s well worth a go!

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