so o thought i was having a relapse…..

Everyday living
1

So Ive been in a new job for the last six months, it involves a long commute - 1 hr 20 mins each way, is really stressful and the hours are really long - 10 jours a day bolted to a desk/terminal. Needless to say in these conditions I am not performing very well. They ratcheted up the pressure at the end of my 6 month probation, giving me daily negative feedback about performance and then called a meting with HR etc and told me they were extending my probation by four months, adding that they dont normally do this and that I shld be gratfeul.

That was four weeks ago. Last Friday night my right leg buckled under me on the way up the stairs and the all too familiar impossible to lift your leg/foot feeling was back.

Now, I was diagnosed five years ago, have been on copaxone ever since and havent had a single relapse in all that time. My first attack - ie pre MS diagnosis - was a big spinal cord lesion that paralysed my right leg. the second was a third nerve palsy that made me almost comically cross-eyed like the old bloke off the Laurel and Hardy films.

The feeling or lack thereof I got last friday was just like when I got out of hospital after the first attack, and before I started rehab. I regained 100 percent of the feeling, strength and motion of my right leg and right eye btw.

So this week I took some time off work to recover, have an MRI and see my neuro. He didnt put me on steroids and was pretty possitive even though my leg was getting worse. The MRI came back today and its amazing news, the 40 or so little lesions in my brain have almost all gone!! the big one on my spine is reduced in size by more than 40 percent, and all the others are in his words “fading” I am over the moon.

BUT

so he says the stress of my new job caused a “phantom” exacerbation and that I have to change my sittuation drastically or it will get worse and worse. Its such a bummer to be told hey, your MS is getting better, which is really unusual, except you are f**ing it up with your job.

My employer doesnt know I have MS. I now have to tell them as I have sick notes from this week. There are some things I can do to improve my sittuation, working from an office much nearer my home that is away from my team, which will enable me to rest/exercise more is the main one. But I am not sure how they will react to the news while I am on probation.

Any advice? sorry I know its a bit rambly ond long and I should be really grateful that I am doing so well. But at the same time I havent been worse in 5 years. Does that make sense to anyone?

2

That’s amazing that the Copaxone has reduced your lesions. Brilliant. I suppose that all the stress has caused the inflamation?

I can relate to all the stress from work and the commute. I worked for Toyota and it was one of the most stressful jobs that I have ever had. My commute was 1hr 30, I had to take two trains and a taxi. I had one minute to change trains, so I had to run between platforms. It was horrible. I was completely stressed out even before I sat at my desk. This was three years ago. I was diagnosed two years ago. I have just tried Copaxone but have come off it as it made me depressed. It definitely helped me physical so I am trying it every other day now.

You have to tell them. You have rights. I agree with your neurologist, be kinder to yourself. I know it is really difficult but your health is the most important thing that you have. If they are not reasonable, get another job. I’m going to try to go back to work in September. I am dreading it. I am going to try part-time first.

Good luck.

Adrian

3

I was going to say something similar. Your health is priority not a job like that. Being diagnosed with MS has made me rethink about things and what is important in my life. xx

4

Hello :slight_smile: I’ve heard stress can aggravate MS. If I get stressed I get twitchy and brain ‘warch’ ( as I call it). I had to stop work as I’m just not physically capable. The stress also got too much, I had a heart attack, surgery, then I knew that was it for me…end work for now. My point is ( get there in the end lol) you’ve got to reduce your stress. It must be making you pretty miserable too. Maybe a career change? Not sure if that’s a possibility? I was really pleased to hear the lesions are clearing. That’s amazing and must have felt wonderful to know. Take care bevx

5

thanks everybody its so good to know there are so many caring people out there that you dont even know. Lots of love to all and I hope everyone has a good day tomorrow.

and yes the job is f***ing miserable, I have 20 years experience all over the world and they treat me like an intern. The sittuation has made me ill, I shld just leave.

(yes Ihave just got in from the pub :slight_smile: )

6

Amazing news re lesion load! I’m chuffed for you. You must feel on top of the world from that desite your job.

7

Great news regarding leisons Not so much with your job. Do what is right for you. Know it’s hard I’m just dx 6 months ago. A year since first relapse x

8

thanks everyone, in more good news, with MS I only have to drink a pint and a half of lager and it feels like 6 or 7 :slight_smile:

9

Hi. I am new to this. I was diagnosed 4 weeks ago. My worst symptom was vertigo which I couldn’t sit stand or walk even when sleeping it would wake me up. I was given gabapentin for this and to treat the nerve pain in my neck arm legs and feet. I have had this increased to 300mg 3 times daily. Some days i feel like I am shaking uncontrollably and my legs feel like jelly and that when I walk my legs are going to collapse beneath me. I also feel really spaced out. How do I know if this is the tablets! I keep asking my gp and neuro how long will this last as it has now been 3 months. At the moment I feel half normal 1 or 2 days a week. I find it really frustrating not being able to plan. I have been told I can still drive but being in a car even as a passenger is really uncomfortable. Does anybody else experience this?

10

Hi I have only recently been diagnosed but I had a really bad episode of dizziness and vertigo which lasted about 6 weeks everything was spinning and it also effected my vision… I hope yours start to prove soon x