Newly diagnosed with ms

Hi everyone, just seen my nuero this week and after a ten year battle to find out what was wrong, got an ms diagnosis. The funny thing is I was expecting it, and after years of being told it is just fibro I was hoping something would show that would lead a definite diagnosis I am devastated. I know this makes no sense at all, but I fel like I am in shock. Because I was trying to take so much on I did not ask enough questions, one which I really wanted to ask was about my legs. Maybe someone here could help. For the last couple of months my legs have felt very heavy, particularly in the afternoon and evening. They are not painful just I feel it is an effort to move, if anyone could let me know what this is I would be grateful. Thanks, Ann

Hi Ann & welcome.

My neuro rehabilition consultant had referred me to orthopeadics (sp?) and has also referred me to look at FES (Functional electrical stimulation I think) as I suffer from foot-drop and my right leg gets heavier as the day goes on.

Take your time learning to live with it, I’m not sure then expecting it and then being told must still be tough. I’m a likely PPMS’er and was diagnosed last year, my diagnosis was a complete shock, I just knew MS was a bad one but had no idea what it really meant! Oh, and it’s taken a year to get the tearful days down to about every 6 weeks :wink:

You’ll find plenty of support here if you need it tho

Sonia x

Hello Ann

Sorry to hear about your diagnosis. I can understand why you feel shocked, even if you were expecting it…all of a sudden after struggling for ten years, it’s real and final.

Write down all the things you wish to ask, then you can speak to your gp or MS nurse about what’s on your mind.

Regarding the heavy feeling in your legs Ann. It’s not something I’ve experienced myself…unless you mean heavy in the sense of like weakness when you feel tired…that I do experience.

Hopefully someone else will come along with more ideas.

Take care xx

Hi Sonia, thanks for your reply. I am a likely PPMS’er too and that was a real shock. I hoped I would get my diagnosis get treatment and start too feel a bit better. The nuero is sending me for loads of tests in the next couple of weeks but he said that it is likely PPMS’ and we will talk more on my next vist. Does that mean no treAtment at all and I will just steadily decline. Excuse my typing numb right hand. Thanks, Ann

Hi Ann,

come visit the PPMS section, we’re a friendly bunch and it’s been a lifeline for me, that’s for sure!

Yes, it’s a general decline but I think we’ve all discussed the random things that go away (for no reason) and there’s no set speed of decline, some of us seem to progress faster than others. I have a theory that I’ve maybe had mild relapses for years and maybe I have RRMS & SPMS… but who knows, I can certainly recall having a problem with flip-flops (yes, seriously!) going back over 10 years (maybe 15 even?) and I can kick the right one ahead of me with absolutely no knowledge of how it happened! and there’s the embarrassment factor of the speedy skidding flip-flop and me screeching at hitting the tarmac, gravel etc. barefoot then having to try to catch up with the flip-flop with only one to sort of hop on

Anyway, I’m not trying to make light of it but I hope I make you smile at least

Oops, I’d forget my head!

Meds - no there’s no “treatment” as such but plenty to cope with any side effects. I take:

  • Amitriptyline at night to help me sleep
  • Gabapentin for neuro pain (I’ll look for the link when I have a chance, neuro pain is an odd one, I didn’t start taking them til a few weeks ago)
  • Baclofen/tizanidine/dantrium for spasticity - in other words, I’ve had a few problems with side effects so I’m actually taking Nabilone (long story and Baclofen is usually the first offered

There’s also loads of others and this site is pretty good for that, the only thing I’d personally recommend is LDN (Low Dose Naltrexone) but you’ll probably want a little time before looking at alternatives!

Take care

Sonia x

Thank you Blossom and Sonia for your kind replies. Sonia you did make me smile and I did not think ithat was possible today. I will come and vist the PPMS section. Regards, Ann