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Advice

Hello,

This is my first post… don’t really know where to start. Started have issues with shaking and tiredness in March this year. Was referred to neurologist (who i get a good feeling about… very helpful and thorough). They found some lesions but wasn’t sure if it related to an old rugby injury. Currently waiting for results of lp and more MRI’s. Finding myself in limbo at the moment.

I started on gabapentin which i feel has helped with the painful joints and taken the edge of the shaking, but I feel its giving me a mental fog… is this normal ? Or could it be the MS ?

I have definitely noticed thing getting worse since March. I am struggling with work, walking an distance, light exercise makes me feel rough. I know its dangerous but I am putting 2 & 2 together and thinking i have progressive MS. I would value anyones thoughts if they agree ?

I know i am jumping the gun a bit as i haven’t had a formal diagnosis.

Ben

hi ben

hold your horses, wait for a diagnosis before you start assuming that you got the worse flavour.

a very high percentage are diagnosed with rrms.

there are other possible diagnoses.

let’s hope it is something simple like a vitamin deficiency.

wishing you well and hoping for a good outcome

xx

thanks Catwoman,

I assumed progressive as its got worse since march… i assumed it couldn’t be relapsing.

Do you have any experience with gabapentin ?

Ben

Hi Ben

As Carole said, don’t jump to a diagnosis before the neurologist has confirmed it’s MS. Even then don’t immediately assume it’s PPMS. That isn’t generally diagnosed initially as it’s not known for definite whether you’ll get remission for months and months. 85% of people are diagnosed with RRMS.

By the way, I don’t entirely agree with Carole that PPMS is always the ‘worst’ kind of MS. Apart from the fact that there are no disease modifying drugs available for PPMS (which is the most unfair thing about it), sometimes people with progressive MS are very slow in their progression. Meanwhile, some people with the RR/SP pattern of MS are very badly disabled from it. Of course, there are people with PPMS whose disease has a rapid progression pattern, they could be said to have the ‘worst’ of a bad bunch. But there are also people whose PPMS is incredibly slow moving, even without any DMDs.

So if you are diagnosed with MS, the chances are that the neurologist would make the initial diagnosis of RRMS and hopefully, quickly get you started on a DMD. And it may be that you will gradually over the next months improve from your current symptoms, so that would be the correct diagnosis.

But, don’t even count on it being MS at this stage.

Sue

Thank Sue, that’s helpful. I didnt know that about RRMS.

Have you got any experience with gabapentin ?

thanks

Ben

Hi Ben

Yes, I have taken Gabapentin, but it was a few years ago, so I don’t remember exactly what the effects were for me. As far as I remember, it wasn’t terribly successful at treating the types of pain I took it for. But I know that many people do take it very successfully for their pain.

If you find that the drug doesn’t do what you want it to, or have side effects from it that are unliveable with, there are many other drugs you could switch to, it just depends on what you need the drug to do.

Sue