Should I know if it’s a relapse?
I have been feeling so crappy. I am diagnosed with RRMS since 1998 at age of 28. No real problems until 2017! When I had a flare up main symptom dizzy and fatigue - severe. I recovered nearly complete, went on my first dmt copaxone. Annual mris were fine, a couple of small lesions even disappeared! Now 3 years later when I had my annual mri (just 15 days ago) it showed new peri ventricular lesion which was highlighting plus another new non enhancing lesion in frontal lobe. Neuro is having neuro radiologist look at them for a second opinion. I am being treated at Johns Hopkins, I believe good care. I like and respect my dr. It is my symptoms I worry about. I am so lightheaded and easy to tire. I am depressed and I honestly don’t know which came first the depression or tiredness. I have crying spells because I am so tired and feel so crappy. I work full time and I am so late to work every day. My legs feel weak, I can’t find words or get my sentence out most times. It is hot here has been in 90s I can’t be in it more than 5 min without worsening symptoms. I keep telling myself it’s just the heat but maybe I’m having a flare. And if so what should I do? I haven’t discussed these symptoms with my dr. I don’t meet with him until November. I just feel I don’t know what I should be doing except resting but I feel very useless to everyone around me. I also am afraid I’m moving toward spms. My anxiety is over the top. I am hoping to hear from folks who understand and maybe have similar experience. Thank you for being there:)
Hi @angieh, welcome to Shift. That's my Geography lesson done, I had to look up where Hagerstown is! From what yo have written, it would seem that your MS has been (fortunately) slow burning. With things being on an even keel for so long, I can see what a huge shock it's been to you, your body and your emotional state to have this probable relapse. I guess one of the most awful things about this is the unpredictability. The lesson there is that we can't ever get complacent. And the tough thing about that, is that if MS is in your head and worries every day, it will take over your life. We can't win! So, are your workplace aware that you have MS? That will be a start, as they have a duty to help you at this time. You could ask to have an Occupational Health assessment, this really helped me as it presents a full report from your perspective and will identify some of the reasonable adjustments which can be made. It sounds like anxiety is quite new to you, and can easily be helped with some medication, even if only temporary. I've been shocked at seeing the impact that stress can have on us. I have never experienced anxiety in my life and now - aged 54 - up it pops in the middle of the Covid crisis! I imagine that you might also be early 50s; something else I would say is that at this age, with children/decades of work behind you, you kind of think your life pattern is set, and then ill health descends and kind of ruins everything (I was diagnosed at 50). You will have to find a way through it; yes, it's not what you were expecting, but you can do it. First thing is to take a deep breath and acknowledge all the positive things in your life. Fix an appointment with the doctor to explain how anxious you are. Speak with a trusted boss/employer and get the ball rolling there. If it is SPMS, then it is what it is; it's just a name, and you will still keep going with your life. There are loads of folks with SPMS on here living full and happy lives. You have lots of support here; you're a survivor, you just need a little help to get you over this hump. Take care, keep posting, I'm sure it will help! x
@angieh Hi. First thing first, if you have new lesions on your MRI, you need to do something about it. What you describe (new lesions on MRI) basically means that your DMT is not effective for you (you are not a responder of copaxone if you prefer, by the way the majority of pwMS aren’t either). So to my mind, you really shouldn’t wait until November to see your neuro/MS specialist. In my opinion, you need to ask him/her now to switch your DMT for a more potent one (don’t accept a switch for another CRAB drug). The 'good' news is that your MS is active (and not only smoldering progressive) so you CAN do something about it with current anti-inflammatory DMT (especially high efficacy ones like monoclonal antibodies, for example anti CD20) to prevent more damage (and maybe calm down some of your symptoms).