Hi so I added my first post some 5 years ago after some odd symptoms, shook myself off as being a bit paranoid. So now 5 years on I’ve just had a diagnosis of CIS. I spent a week in hospital having various tests and 3 days of IV steroids. My MRI scan showed inflammation in spinal cord, neck and lesions in my brain. I had positive L.P for o bands. Because my history was unable to determine a significant event it’s CIS for now. Neuro felt my neck inflammation was old as I had no current symptoms for that area. They have said my chances of a relapse are high. I’m having a repeat mri in 3 to 4 months with Neuro follow up. I’m to start a Mediterranean diet and 2,000 iu vit d daily in the meantime. I’ve been doing ok at home, legs are getting stronger. I’ve had new tingling in my hand since Sunday and today I feel exhausted. So how do I know if this is related to current event or it’s new? I wasn’t given a cut off time. I’m probably overdoing things at home, I’ve a young family. I know advice is to rest which I’m trying. I’ve also really bad backache to lumbar area, I’m putting this down to bruising from a failed and traumatic l.p 9 days ago. I’m being sent info for MS nurse in the post. Sorry for the muddled post, just feeling really lost today after feeling really positive. Thanks for reading.
I’ve just read your first message from 2014 (answered by the lovely Tina - who is still missed!).
So you weren’t paranoid at all! It annoys me rather that you clearly have had more than one relapse in the past (you mentioned in your old post that you’d had things happen before), but because it’s not been medically recorded, it doesn’t count. Thus you have CIS, rather than MS. Which in turn means although you could start a disease modifying drug (DMD), to reduce the risk of further relapses; chances are the neurologist would rather wait and start you on something better than the few DMDs allowed for CIS.
So, your question about whether you are still living the relapse that took you to hospital, given the new tingling and the fatigue. It could be new, but most likely it’s not. The reason I say this is that the job of steroids is to beat down your immune response. They continue to work for some time after the last dose, so given your immune system isn’t at full throttle, it’s unlikely to be a new relapse straight away.
Plus, as you are maybe finding out, fatigue is a beast that can bite you even without relapses or other stimulus. So the fatigue is basically telling you to pace yourself. I know this is hard when you have children, but it’s a case of doing things bit by bit. So rather than trying to clean the house, feed the children and do the ironing all at once, try and spread things out. After doing a spot of ironing, sit down, drink tea, read a story to your children and just do things a bit slower.
The backache is almost certainly from your LP. Not nice, but it will improve, take some painkillers and see if it improves. Don’t forget, you did spend a week in hospital. Yes, it was for diagnostics, but you weren’t actually well at the time. And you had some fairly nerve wracking tests, as well as the bad news that you do have some species of MS (even if they are calling it CIS).
So don’t undervalue the emotional reaction to what has happened to you. Any kind of MS/CIS diagnosis is scary, weird, upsetting, infuriating, worrying, nerve jangling. Having children just makes it harder. Both because you ‘have to be strong’ for them, because you are scared about how your future will impact on them and just simply because you worry how to take care of yourself and your family.
Give yourself a break from the worry. See if you can park it a little, whatever is going to happen in the future will happen. Try to rest and recuperate. Take time to absorb the fact of the diagnosis you’ve been given without too much panic over the future. Get in touch with your MS nurse. A good nurse is worth his/her weight in diamonds (almost).
Don’t forget, we’re still here, we will do our best to help and support you when you have questions and worries. We’re not reputable medical sources; we only have our experience to guide us, but we are quite good at sympathy and fellow feeling.
Best of luck.
Thank you Sue. You’ve given me some really sound advice. I guess as well as being worried about my physical state I’m worrying for my future with 4 kids and how to balance things out for the best for every One, and working if course, my job is physically demanding as well as pressurised most of the time, I’m only part time so that’s a blessing. It’s hard to know how to feel, both angry and positive. All part of the process and not much I can do to change the path ahead. I’m sure to post more as I’m able to process things, my brain feels rather muddled right now. Thanks again Sue for your time and support.