Should I report this relapse?

[sarabeach123]

This is my first relapse since the diagnosis and since starting Tecfidera (9 months ago). I had been really happy with the Tecfidera since I hadn't had a relapse since starting it. Previous to that, this had happened 3 times in the 9 months before that - it lasts about 3-5 weeks each time.

It really is very mild and I know that I am lucky that my symptoms are not very bad, yet the emotional strain is very difficult. I am not sure if I am supposed to contact my neurologist/MS nurse - I haven't spoken with them since the diagnosis about 10 months ago. I know there is nothing they can do.

All relapses have been the same - a mild loss of sensation from my ribcage down, on the left side of my body. It doesn't affect my walking or balance, from what I can tell, it is just a sensation. Cold touch has a slight painfulness (cold water, brushing up against anything cold)

Very few people know about my diagnosis since my only symptoms are constant facial tingling, and mild left toe tingling, which although extremely annoying to me, isn't visible to anyone else. And so I haven't told anyone about the flare up I am having right now and that makes me feel even more lonely. I don't want to bother the people who do know. Not sure if I feel like I want to bother the MS nurse - it will just be a hassle to have to explain it to someone who I feel doesn't care.

[hunterd]

I cannot shout loud enough to report this to your doctor! My MS specialist told me to call her about any little change that I noticed, or even thought that I noticed

[Tia1]

I say report! I hope that you feel better soon.

[sarabeach123]

I did call the MS nurse. She said it is probably because I have a cold that these symptoms are re-appearing because my immune system is fighting off the cold. I disagree because I have a little bit of a stuffy nose and have sort of lost my voice - but that is it. I don't feel run down at all. I have had much much worse colds in the past few months, and I've never had a return of these symptoms. It is getting really annoying now. My left side essentially is like it fell asleep and hasn't quite woken up. I am dreading that this will last for a long time like it did last time and even that I will have permanent symptoms instead of it improving like what happened with my tingly face which never went away.

Basically, my mind is running wild with all the worst case scenarios and I realize that isn't a healthy frame of mind, but I don't know how to make it stop.

[Mermaid Susan]

Keep Trying to Help Yourself

Dear Sara,
I am so sorry to read that you are uncertain and struggling with your possible relapse. I have had MS for decades, and I am Secondary Progressive now, but my MS still goes through times of more symptoms. Many times this happens when I have another sickness, even a small one. Or when I am especially anxious about anything at all.

The response of your nurse may seem dismissive, but I sometimes question myself about whether I tend to describe my symptoms in a minimizing way and to misinterpret the reaction of others as not caring when really they couldn't hear what I wasn't saying. I hate to show weakness. Maybe you are the same way.

Try not to awfulize. What ever develops will come in its own, unpredictable time. I try not to put myself in a worst-case-scenario before it is right in front of me. Make the most of each day, I say.

Take Care,
Mermaid

[Chirpy]

I also have difficulty working out what to tell the MS nurse, I feel like things aren't a big deal and they'll probably go away and really what are they going to do about it? and won't she think I am just a hypochondriac?.... Sometimes the nurse just says did you see your GP? so I have to go off to the GP and she says, I can't see anything, what does the nurse want me to do?.. and I say I dont know... so we find something else to chat about for a bit, but then I can report that I went to see my GP (at least if its something actually alarming, my GP is friends with my Neuro, so she can just ring him directly without going through the nurse :-) )

Other times, the MS nurse says please tell me whenever this happens...

I never know which random mild thing will be in which camp... so my plan is to just keep saying everything to the nurse, because I don't know whats important :-). Also I am at risk of getting PML, so that helps me overcome the guilt of reporting "inconsequential" things..

[Waydwnsouth1]

sarabeach123, I know how you feel. It's sometime hard to know when to call our Neuro or not. If you feel like the nurse was being dismissive and your symptoms seem to be getting worse call back and be more assertive. Squeaky wheel gets the oil first.

[meissie47]

Hello. I'm in the same boat going into my third week of dizziness. I'm sure its a flare because i deal with this issue off and on but when its on going for this long.......

So I decided not to call my neurologist because I already have a scheduled appt for next week and the only thing they can do is steroids. which I don't want to do this time.(been through this a few times)

So i decided I'd take the vertigo/dizziness meds ,tough this one out and just discuss it when i get there. Although the side effects for me interfere with daily life when this happens.

Do what you think is best for you.

[Mamabug]

I keep my MS Specialist informed about any symptoms that may, or may not, be a relapse.

Pseudo-relapses can occur when your MS symptoms are temporarily aggravated. The symptoms are still real, but are not caused by a worsening of the disease or new inflammation, like in a flare. So, your neurologist could be correct -- your cold symptoms could be causing your symptoms, rather than a real flare.

It's hard to know, though. In my experience, the same conditions that can trigger a pseudo-relapse can also trigger a real flare. Hang on for 24 - 48 hours, and, if the symptoms continue, call them back. Maybe the doc's response will be different.

Here's a helpful article to read if you want to know more: https://secure.nationalmssociety.org..._msattackornot

It's long, but well worth reading.

[sarabeach123]

I did end up reporting it, they got me in for an appointment the following week. The neurologist intern/student said she thought it was a pseudo-relapse, then the neurologist came in and said he wasn't so sure. Long story short, it doesn't really matter - its not serious enough for steroids, nor would I have asked for them even if they offered them. They are considering tysabri for me because of increased lesions in the last brain MRI. My neurologist also scoffed at all alternative treatments (even my vitamin D intake was excessive for him) and went on a very long rant about the zamboni vein study - not that I even mentioned this or was even thinking about it! Clearly he is not a fan of anything other than the drugs.

[Mamabug]

Glad you reported it; Sarah.

It's good for them to know what's going on, even when it doesn't need treatment. You're lucky you can get by without steroids. If I don't take steroids, my flare, even if it starts mild, just continues to worsen until I need hospitalization.

I'm not a fan of the zamboni treatment either, and neither is my MS specialist. But, she, at least, considers other options. She very seriously considered creating a research study, back when it was sort of new, and was open to me participating in a different study when she decided not to. As results have come out about it, though, she is not currently in support of it.

She does recommend Vitamin D. She wants me to take 1000 mg per day. I, actually, take 5000 mg. And, I'm a big user of other supplements too. I tell her about some of them (Lecithin, Fish Oil, Vitamin D3, Cucurmin), but I take too many for me to want to mention them all.

[Auctioneer]

My neurologist chewed me out pretty hard for not reporting my relapses. I just thought it is what it is. They want to know even if I decided I didn't want to take an infusion of steroids. I have taken the steroids for some and not for others. My choice. It can still go on your medical record for your MS history. Just my thoughts.

[palmtree]

It makes me sad to hear about people who have neuros chewing them out. In more metropolitan areas there are better doctors. You have to research but some are very kind. I use Vitals online because they have patient reviews.

If you have the means, think about relocating to a place where there is better health care. People with MS shouldn't have to be screened by nurse practitioners.

But I agree with everyone. Report your relapses. That way they know the pattern of your condition. Even if you don't want to change any treatments or refuse steroids, they have evidence to confirm to the insurance companies.

[Leah27]

relapse or over-reaction?

I am currently on my 3rd and last day of solu-medrol for my first treated flare. I had a limp, left side weakness, neck/ back pain, and left foot drop (stumbled often, didn't fall). I had an MRI after my first day of steroids and no growth or inhancement was present from the radiologist report.
I am also wondering if i should have "toughed it out" but my dr said a symptom it lasts for more than a day, or is new and not just sensory I should call. She insisted on IV solumedrol after my weakness and stumbling was apparent at my visit.

I wonder if it was a true flare ( I was stressed, I had slept funny) b/c no findings on MRI ? I am feeling 100% better after 2 days f steroids though. I am wondering if anyone has had similar experience or insight?

[Mamabug]

Steroids don't work that quickly for me. I often have to be finished my 5 day dose plus my 12 day taper before they work. Some flares, it still hasn't worked and the nurse at my MS Specialist office needs to remind me to patient -- that they still continue to work in my body even after I've stopped taking them.