Don't understand

Hi Still awaiting DX now neuro has asked for a CT scan of my chest & lungs as suspects something else, still possible RRMS he says. So I’m 6 mths in to this flare although a lot better than I was my legs still suffer a lot of pain, some days more than others, will this ever stop or will I be left with this pain all the time Surly I can’t still be relapsing Help please any thoughts Gray

Hi Gray,

MS relapses - if that’s what it is - can last for months. I’ve had one lasting a year, and I’m not sure even that is an absolute maximum. So it’s still to early to conclude there won’t be any improvement. But many people do have residual symptoms after a relapse, that never quite go.

I’m not sure how far the same is true for other conditions that are still being considered.

I know you mentioned sarcoidosis as a possibility - that’s probably one reason for the chrest X-ray. I also had a chest X-ray during diagnostics. Some (rare!) types of vasculitis also affect the lungs. But my neuro always thought it would turn out to be RRMS, because, as he put it: “common things are more common!” Not that MS itself is common - only about 1 in 1,000. But if you’ve narrowed it down to either that, or something that only affects, say, six per million, the odds aren’t 50-50 which it’s going to be.


My chest x ray was for lupus, if I remember correctly.

Do you know, I never knew what the chest Xray I had during the diagnosis process was for and I never asked either.

Not a very proactive patient in those days

Thank you once again folks Was just having a bad night on the plus side have just finished my first week back at work after 6 mths maybe over did it Thanks once again Gray xxx

Gray I had a ct thorax also before diagnosis was definite. I think he was making sure sure… I wasn’t too happy about the radiation but he felt it was indicated so I went with it. I’m sure your neuro is like mine- very particular and ticking all boxes before coming up with such a life altering diagnosis. There are worse things than MS though. Also if they weren’t so thorough and just treated for MS because it seemed most likely without being certain the treatments wouldn’t help!!! Huge congrats on getting back to work… It’s hard going back. I’m back middle of next week after 2 weeks off… First time I’ve missed work with my MS. Love Lilly xxx

Hi Gray

I went back to work way too soon after a big relapse and had awful pain in my legs for another six months. It’s still early days yet, hang in there. Rest as much as you can. I find the worst thing I can do is sit still for too long. There’s a balancing act between being on my feet for too long and sitting down for too long, one day I’ll work it out ;-). So will you.

Hope you get your diagnosis soon, at least then you can will have a label to hang on it.

Tracey x

Hi Gray

It’s really frustrating waiting for diagnosis, but huge congratulations for getting back to work!!

Take it easy, be kind to yourself and try not to overdo it as with anything the day itself may be completed but then you might have to pay for it for the following days.

I am in month 4 of being off work from MS. Huge relapse for a condition that I didn’t know I had. I just take every day as it is and keep focusing on the good. Although that’s not always easy!!!

Take care, look after yourself

Asher x

Thanks guys Gray x