Forum

New diagnosis

I was diagnosed with Rrms a few weeks ago and awaiting my MS nurse appointment eagerly. Having read a few things on here I just wanted to share how I’m feeling.

Firstly I can’t believe it even though I have tingly legs, L’hermittes (not sure I’ve spelt it right) lesions on brain and C6 and positive lumber puncture and numbness in hands and feet and complete fatigue at times! I look great in the mirror.

I am 60 and I think they may have the diagnosis wrong. My feeling is I have primary progressive as I never have “episodes “ as it is defined, I have all the above sensations daily and over time they have got worse. (3 years its been going on)

also because I’m in denial it really annoys me being so tired as I feel it’s mind over matter and I should be able to be more energetic but can’t be.

Do other people feel like this?

Hello

Welcome to the forum. I know it’s a place you’d rather not find yourself, but now you’re here, get comfortable and prepare for the long haul.

Obviously it’s possible the neurologist has made the diagnosis of the ‘wrong kind’ of MS, but a diagnosis of primary progressive MS is only usually made with either very clear signs that it is indeed progressive. Plus, supposing s/he is right and it is relapsing remitting, you can now get access to disease modifying drugs (DMDs). Which you can’t get once it’s labelled PP.

Sometimes relapses take so long to improve, and any improvements are only partial, so you think symptoms are with you forever, yet they are slowly remitting.

Fatigue in particular is one symptom that we do tend to keep regardless of the type of MS. Have a look at https://www.mstrust.org.uk/a-z/fatigue for information about fatigue and management of fatigue.

You will hopefully find that your MS nurse is someone you can be honest with about your feeling that RR is the wrong diagnosis. And it may be that s/he will be able to differentiate things for you a bit better.

Best of luck.

Sue

Thanks. I’m being prescribed Gabapentin for my tingly legs and insomnia about to start soon I hope. I have been offered DMT which I’m accepting but have delayed trying it until after Christmas as I don’t want “flu like symptoms “ on the lead up to Christmas. It gets busy here!

I think this forum will be a big help and comfort to me going forward.