Potential relapse

Hello, I’m a 45-year old woman with RRMS since 2010. I’ve only had one confirmed mild sensory relapse when my left foot went alseep for three weeks. This resolved but I continued getting intermittent supermild sensory symptoms that whole first year - tingling/icing/burning here and there, eye pain, little twitches, mild hand tremor and some kind of perceived jerkiness of limbs (was constant for months and felt like coordination was a little bit off) - all invisible to others. In 2011 I had a long, probably a whole year, episode of “hard to stand” where I felt restlessness, burning/tingling in feet, heaviness in legs - but I could always endure standing in lines etc. Nothing happened if I kept standing, I was just uncomfortable. Nobody could notice. My brain MRI has been stable since 2010 with one bigger and one smaller right-sided lesion which potentially caused the left-foot numbness. There are also some potential small periventricular lesions that may have been added in 2011 at the latest. Never any spinal cord lesions. Was on Copaxone for a year, then Tysabri for 1,5 years, and am currently on Gilenya since 2013. Since my diagnosis I’ve felt mild intermittent old symptoms but nothing constant. A little burning here and there, left foot like soda, occasional “hard to stand”. MS has never stopped me from running.

I almost felt like MS had gone away for many years. Until May this year. My neurologist had me taper Gilenya to every other day due to low lymphocytes. Two weeks into this a lot of the old sensory symptoms returned with a higher-than-before intensity and persistence plus some new ones such as back vibrations. They kind of rolled out one after another. It’s been four months and I’m now stuck with daily “hard to stand”, weird sense when walking (issues fluctuate - may have to push harder or may feel a slight sense of incoordination) and a sense of static fatigue in arms when holding something but no clinical weakness in legs/arms so hopefully just sensory, plus the old perceived jerkiness of movements (invisible!). Much of the initial intensified sensory stuff (burning/tingling/vibrations/jitteriness) from May is gone. I can walk for more than an hour despite the weird sensation. I last ran on Aug 29 but although that went well I haven’t “dared to try” other than finishing an hour-long walk with a sprint as a test on occasion. I’ve seen a PT who could find no neurological deficits - tested for spasticity, ankle clonus, muscle weakness, balance etc.

I have repeat MRIs in two weeks and then I’ll see my neurologist. We have been in touch throughout this episode but he (understandably) downplays it due to lack of functional deficits. But to me my symptoms are like my whole existence! I feel that my neurologist believes me though. He is positive that I’ll get better. My husband (an MD) insists that this is not a relapse since the symptoms are so mild and he can’t notice anything. He insists that it’s not progression because there is nothing clinical.

Does this sound like a relapse to you? Can these symptoms be “just MS” which I sometimes see people describe their sensory symptoms? I’m so confused. In the beginning I was convinced that it was a relapse, since the symptoms started suddenly in connection with my Gilenya tapering after many years of nothing. Now I fear that it’s progression because it’s been four months and I still have the less milder ones. (Or that it is “the beginning of” progression since I don’t have any functional deficits). I could totally live with the symptoms as they currently are. I know I’ve been very fortunate so far with the disease. Maybe my constant fear causes me to blow the symptoms out of proportion like my husband says. I even fear that neurologist, PT, husband are missing how serious this all is… They fail to calm me.

Thanks all

“just ms”?

is there any such thing?

surely only a person who didn’t have ms could describe it in this way.

it’s good that you have an appointment to see the neuro in 2 weeks.

the fact that you have been asked to taper off your gilenya confirms to me that you’re experiencing relapse like symptoms.

have you spoken to your ms nurse?

with respect, your husband is not an ms specialist so don’t get upset about what he says.

best to wait the 2 weeks then unload it all to your neuro.

Thanks for your answer. I think people use “just ms” for symptoms that they can’t relate to a particular relapse. Maybe stuff that comes on due to simmering low-grade inflammations which I believe can occur. I don’t know. In my case I seemed to have mild intermittent urinary frequency for many months which I would describe as “just ms”. Nothing that wasn’t manageable. I only communicate directly with my neurologist via emails. He is very good at getting back to me.

Pella - I posted as anonymous by mistake

hi pella

i posted anonymous by mistake last week.

it’s a shock when you read a post by anonymous to find that you recognise it as your own!