Today is the 2nd day of me getting a muscle twitch in the upper part of chest on the right hand side. Obviously due to it being in my chest I have been reading up on it and I’m certain the issue is called Benign Fasciculation Syndrome - a symptom of MS which basically means symptoms of muscle twitching, numbness, tingling and fatigue - just like most of us, but I’ve never heard it called this before but its strangely uncomfortable! At the same time I’ve been getting very strong twitches in my left thigh. I get restless legs too, which have been under control until recently by taking daily magnesium. Previously I was taking amitriptyline but weened myself off it months ago so looks like it’ll be a trip to my gp tomorrow to get it confirmed and back on the meds. Possibly not a bad thing as I have an appointment with my neuro on 6th feb to discuss DMD’s as I had to stop taking Tecfidera due to prolonged low lymphocytes levels si I’m currently not on any DMD’s. Perhaps this’ll count as a mini relapse? Sharon x
If your lymphocytes are still low, it’s likely that it’s not a relapse. My neurologist explained that the desired effect of Tecfidera is to lower lymphocytes. But what sometimes goes wrong is that they go too low and that’s why we have to stop the 'Tec. However, the reason for wanting to lower lymphocytes is that if your lymphocytes are low, then your immune system can’t beat up the myelin and so MS relapses cant happen. So when my lymphocytes were low due to Tecfidera, my neurologist said there should be some protection from relapses.
But, if your lymphocytes have recovered, then yes, it’s probably a relapse. The white blood cells have reformed their battalions and the army has aimed its’ cannon at your myelin again. But obviously, talk to your neuro,
I assume you’ll either have already had, or will have a blood test prior to the appointment. Now, in your position, if I didn’t already have an appointment for a blood test this week, or have had a recent test, I’d be getting onto my GP tomorrow and asking them to arrange a blood test to include the white blood count, the lymphocytes and neutrophils. You can then get a print out of the results from your GP to take to your neuro appointment so that if your lymphocytes are now normal, you can get started on the next DMD asap.
And if they’re not back to normal, then you can discuss what is causing your current symptoms.
What a great explanation. Thanks Sue. Due to these spasms I was thinking of calling my gp tomorrow and as you said it’d be a great opportunity to get my bloods done ready for my neuro appointment next week. My neuro wants me to start aubagio, but I’m not too sure. The side effect dont soynd too good and the chanxe of relapse is only 30%. Let’s see what he says next week. X
I’m confused now. Sorry to quote what you said: However, the reason for wanting to lower lymphocytes is that if your lymphocytes are low, then your immune system can’t beat up the myelin and so MS relapses cant happen. So when my lymphocytes were low due to Tecfidera, my neurologist said there should be some protection from relapses.
But my lymphocytes have not lowered on Tecfidera they have gone up to either 2 or 2.5 over the last 24 months I’ve been on Tecfidera. I haven’t had relapses.
I will ask my neuro when I next see him I guess.
What I’ve been explained is that your lymphocytes lower when you start Tecfidera, then they come back up, not usually right up to the top of the ‘normal’ range but up anyway.
What’s happened to Sharon and me is that our lymphocytes went down below 0.8 (actually 0.3 - 0.4) which was way too low to protect against infection, which is why we had to stop the Tecfidera.
Your lymphocyte level may have started higher, perhaps dipped in the first few months then normalised. It’s still (at 2-2.5) not at the high end of the normal range. The normal range of lymphocytes is either 1-3 or 1.3-3.5, (different sources say different ‘normal’ levels).
So your Tecfidera is still doing its job. If you accept that inflammation causes MS attacks, then during an MS attack on the myelin you’d expect the lymphocyte level to be a bit higher.
This, by the way, is my non scientific understanding of what’s been explained to me by someone much cleverer and knowledgeable (i.e. my neurologist), so I could well have got stuff wrong. I still think the basics are roughly right though.
Thanks for the reply Sue. My level was 1.3 before starting Tecfidera, so lower but a neuro (not my neuro) said people have different reactions to different drugs and there is no cause for concern that my level is always up higher (2 - 2.5) than before starting Tecfidera.
So for me (everyones different) it seems lower lymphocyte levels are connected to inflammation.
Interesting to know what this is called. I get random muscle twitches in different parts of my body xxx