My Avonex experience so far.....

Hello all - recently diagnosed so new the forum. Here is my tale…

  • About 2 years ago I was referred to an opthamologist by my optician as I had slighly dull vision in my left eye (which I now know was due to optic neuritis)
  • Opthamologist referred me to a neurologist and for an MRI
  • Neurologist reviewed my MRI and told me I had lesions on my brain and may have MS - quite a shock given I thought we were just investigating a small probelm with my vision!
  • Has a couple of follow up appointments with the neurologist and put off getting another MRI to see if I had clinically definite MS as I couldn’t see any benefit in knowing either way. However after reading about possible symptoms I realised that the tendency I had to catch the toe of my left foot on the ground when tired sounded a bit like foot drop. As I thought this seemed like I had MS rather than clinically isolated syndrome I decided to have the MRI so I could get treatement if the news was bad.

It was…

  • started avonex 3 weeks ago. After the first injection on Friday I had the expected flu-like symptoms and a bad nights sleep but other than that I was fine the rest of the weekend. In the period leading up to this I had been generally feeling pretty good and content with my lot - I had ms but it was nothing major and wasn’t affecting my life.
  • Just before I headed to meet the ms nurse for my second injection I noticed a brief but intense feeling in my left arm - like the uncomfortablen feeling when a limb wakes up after falling asleep - thought nothing of it as I thought I had been sitting still then moved too quickly or something.
  • Had my second injection and the fluey symptoms were much reduced although I felt much more wiped out the rest of the weekend. More worrying was the fact that I kept getting that numb tension in my arm and hand all week - so many times that I can’t keep count. Spoke to an ms nurse who didn’t seem too concerned about it…
  • Third injection. Minimal flu symptoms other than a bit of a sore head and not as tired as the last week. The weird feeling in arm has continued and I’ve noticed that when it happens my fingers want to curl into a sort of claw - I can resist it and straighten it out but if I try and relax thats what it does. Can’t see any pattern to when it happens - I can be sitting still, driving or playing football
  • I’m also quite sure that I’m experiencing optic neuritis in my right eye. My vision is dulled and the eye is sore.

So, I’ve gone from having a couple of minor symptoms that had little effect on me and that needed 2 MRIs to diagnose MS, to starting treatment and feeling like shit with much more noticeable and affecting symptoms that I had before and that I can’t forget about (NB I’m well aware that I am better off than most people btw).

Has anyone had a similar experience or have any advice?

Just giving this a bump case people don’t go back through the pages and have any thoughts.

The MS nurse and neuro think I’m having a relapse - 1st ever relapse right after starting treatment doesn’t inspire much confidence. Anyway, I’ve been prescribed a course of steroids which seem to have helped the vision a bit. Had an awful day with my arm and hand yesterday where I couldn’t even hold a fork and the “attacks” were several times per hour. Seems like each time I take an injection the frequency of the attacks increases so am not very enamoured with the old avonex :frowning: