9 years & still not convinced

[goonerpete]

I was diagnosed in 2006 with RRMS, in 2011 the type of MS I had was changed to PRMS.

​I think I have only had 1 or 2 relapses in that time. After the first relapse, I was put on Rebif. I lasted with that for 2 years, until I decided that it was doing me more harm than good. 3 injections every week and I was still having the flu like symptoms at least once a week

In 2010 I changed Neuro’s after the original one retired. My new doc referred me to Kings to see the Neuro that he had trained by, because after another MRI he decided that my PRMS was being treated well by the Neuro at Kings. I had a couple of doses of Mitozantrone, but had to stop that due to the fact that I had some more Kidney stones that needed removing. So since then I have been drug free, except for a couple of Mitoxantrone I take before bed, to stop the pain in my legs that were keeping me awake. The fact that they send me to sleep within 5 minutes, help as well

Last night before I slept, I was thinking about my MS (as always) thinking how lucky I was.

I dont suffer from fatigue anymore, and haven’t done for a few years now. Not since I was put on Thyroxine for an under active thyroid, nor do I suffer from cramps. I had ED which was the longest 18 months of my life, but then I got back the use. The only thing that has got worse over the years, is my walking. I have been using a stick since about 2010 and this year I even bought myself a wheelchair (which I have always dreaded using) although as yet, I haven’t used. this came about after a sunny week off work for both my wife and myself. I suggested we have a walk along the prom, as I am now 50yrs old that’s what people of a certain age, seem to do in Eastbourne. After 2 coffee stops and a few stops to smoke, I could go no further, and had only done about a mile in 2 hours.

So, am I just a man with a bad leg, or am I someone with MS who is just lucky.

I hope there are others that feel like I do, and only have 1 or 2 symptoms, or am I the only person with MS who feels luckyish

[Anitra]

Hi Pete,

Perhaps you’re under the impression most people with MS are more severely disabled?

It’s always good - but not always easy - to count your blessings for what you CAN still do, instead of dwelling on things you can’t. So I admire your positive take on things.

However, in my opinion, it’s not that “lucky” to need an hour to walk a mile (with rests) at just 50, or to have felt the need to buy a wheelchair (even if you haven’t used it yet).

So I think your story is a fairly middling one of life with MS. After a number of years, you now have trouble walking. It’s not at the extremes of bad luck, but it’s not a case of being “unaffected”, either. Keep looking on the bright side, and if it helps to think of yourself as just “a man with a bad leg”, rather than dwelling on the causes, I don’t think there’s anything terribly wrong with that. Unfortunately, I don’t think it means you haven’t really got MS, and I’m not sure you’ve got off quite as lightly as you think - but it’s true there’s always someone worse off, so if your way of looking at things works for you, where’s the problem?

As long as you’re not tormenting yourself with thoughts you’ve been wrongly diagnosed all these years. Stranger things have happened, but it doesn’t strike me as very likely.

Tina

x

[Janhhh]

I think it’s more likely to be a state of mind, the cup being half full rather than half empty. You have obviously got worse in that time as you walking seems to be affected otherwise why would you buy a wheelchair. I have had various symptoms for 23 ish years now but have only used a wheelchair this this past 18 months and then only on big expeditions. Other times I use a stick. In all that time I only ever had three significant relapses which resulted in me taking sick leave. Lots of people manage quite well for years leading a “normal” life. I am now classed as SP I don’t get about as much as I’d like but I deal with things as and when they arrive.

It works for me.

Jan x