First post on here so firstly hi to you all. Our story is probably similar to a lot of you and the worries are too. Erin has been progressing really well since getting the condition treated. To be honest from hoisting her from bed back in the summer to her walking on her own (albeit wobbly)is great. She hasn’t had many bad days until this past few days. Last Thursday was her most recent physio session and did well as it has been. Since Friday she mentioned funny feeling in her face, hard to describe, she has also felt very tired and we have noticed she is more wobbly than of late. Took her to physio yesterday but ended up having a good chat with her physiotherapist regarding taking care of her fluids, eating etc. hence the post title bad day or relapse.?
These things may come and go. Though a bad day should be considered a possibility, further check ups might be required in case things don’t improve. Your neurologist should be the best person to give advice. In my case things did get worse so I had to have a second spinal tab and more mri s before I found out that I had to deal with a major relapse…
I will never tell anyone NOT to ask the doctor about symptoms/possible relapse, although from what I understand it's quite rare.
My situation (2 1/4 years out) is that when I overdo it (either mentally OR physically), the next day is usually bad. If I REALLY overdo it, it can be 2-3 days of not being able to get out of bed. And I actually have days (rare though they are) that I forget I'm disabled. Then a few days in bed reminds me...
Hang in there. It's a process. Good luck!
LauraK
During recovery, I had good days and simply days where my mood and energy were uck. It is easy to be depressed over a slow progress, which does not help healing in itself. Patience is required which is not always easy. Try celebrating each little achievement and float over the slow times.
Lynn
Well we have taken a call off our dr. Erin has had another episode which means steroids and looking at long term treatment. Hopefully it won,t be as bad as the initial episode but it still hard to take. Ay persons gone through relapse?
My son has had it 8 times. So yes I know what you’re going through. Hang in there. My son takes methatrexate and solumedrol weekly through a chem port. Never recovers 100%. He’s disabled but still very high functioning. Most people just assume he has a mild form of autism.
How did they confirm it was a relapse?
The MRIs did…
“Luckily” erin had a follow up scan for an appointment at the end of April. A week later she wasn’t,t herself as we have come used to. We phoned the dr and he confirmed that the scan showed new areas of demyelination. So back in this am to the hospital to have Iv steroids and a chat about long term treatment, what ever that could be…