it’s been just over a year since diagnosis, so i thought it would be a good time to discuss my symptoms, my treatments, and my future plans.
signs and symptoms
lhermittes–severe, diffuse tingling/pins and needles in my legs from 5/11-11/11. i still get this occasionally when i am walking, but its very mild and mostly on my right side now.
Arm pain/tingling/numbness–this started around the time that the lhermittes faded away. it was also around the time that i was trying to type my research proposal in my grad program…how timely it was bad enough that i had trouble sleeping and bending my arms made the pain worse. the tops of my arms go numb as well, along with tingling in my 4th and 5th digits. i still get this, but its less intense and usually when i am very fatigued.
FATIGUE–this is probably my biggest struggle right now. i know its going to be a fatigue day when i wake up and my eyes are shaking (nystagmus) and i have an intention tremor. luckily, they both disappear after a few minutes, but its a good warning that i need to take it easy. in general, i have to take it pretty easy but i am trying very hard to push myself and build some endurance. this is one of the reasons i have birdie. in fact, the last couple of days we have gone on some epic walks and i have handled them well. MS:0 Meagan:1!
Cognitive–another big hurdle for me. my memory is TERRIBLE. its super frustrating to know that you should have remembered something, to lose things constantly, to only be able to do one thing at a time, to need to write EVERYTHING down or put it in a phone calendar, and still manage to forget half of the things you need to remember.
Clonus/spasticity–it’s mild, barely even noticeable but definitely there. just after i got my MRI’s back from the workers comp doctors (the ones that found the lesions originally), i saw my physical therapist and showed him the MRI results. he was in disbelief too and he said, “but you don’t have any spasticity, see i can’t even illicit clonus.” as he repeatedly lifted the ball of my foot to show me…and then my foot began to involuntarily beat. i did have clonus. he looked up at me, a bit surprised and a bit grim. at that time, i only had it in my right foot but now i also have it in my left. ah, sneaky progression how i loathe you!
Balance–i lose it often! prior to my diagnosis i was seeing a chiropractor who picked up on these problems before anyone else. each time i attempted the tandem romberg i would sway wildly and lose my balance and it didn’t get better over time. i notice this at key times for instance, when standing at the edge of a rocky cliff. i guess i should avoid those…
Muscle Fasciculations–i get these all the time, everyday. it started just after i was diagnosed. they are annoying and sometimes when they affect a larger muscle a limb will jerk involuntarily. they don’t hurt or cause any issues though. most MS docs will tell you that they are not related to MS but seems like every person i have talked to with MS has these.
Itching–another unproven symptom, but troublesome nonetheless. i get itching spells primarily involving my legs. the sensation is like itching mixed with being poked with something pointy. i believe that the rise in body temp after a warm shower brings on the itching. it also coincided with a flare at the time of diagnosis and has since improved.
Visual disturbances–this is a problem especially when i am fatigued. i skip lines, misread words, rearrange letters, and am noticing more and more that i need to increase the font size and brightness (thereby increasing contrast) on my computer screen when surfing the web or writing in a word document. i also have noticed that i prefer writing in blue ink because of the contrast it gives. because of these things, i hardly ever read anymore. it’s a shame, because as a kid i loved to read.
Vitamin D study–i am a study participant in a randomized control trial through UCSF that is studying the potential benefit of high dose vitamin D combined with copaxone. each night, i take a vitamin D tablet of unknown dosage (double blind) and my copaxone shot. once every few months i meet with the study coordinator to do standardized assessments and track my EDSS score (mine is currently 2.5, in case you were wondering). the study is 2 years long and includes MRI’s.
Gluten and dairy free diet–these days, food is the biggest purchase i make each month. that’s because we shop at whole paycheck (er, whole foods). still, it has been very good for me and i am happy with my choice to quit eating junk.
overall, i take very little medication and i like it that way. i am not big into committment and many of the medications that i could take to control things like the lhermittes and arm pain (which are both enough of a bother at times that i have considered it) have to be titrated up and down–i cannot miss doses or decide on my own to quit taking them. boo!!
Supplementation– i am researching now taking B 12, COQ10, cordyceps, and alpha lipoic acid and acetyl L- carnitine for fatigue and immune system function.
Accupuncture and Chinese Medicine–this has been on my list for quite some time. i am excited to make this happen, and think it could go a long way to improve my mood, fatigue and pain/symptoms. maybe even progression? who knows.
Diet–i have been thinking lately that i need to keep pushing myself forward in this regard. i know i have high levels of inflammation in my body because of my overachieving immune system. there are diets that can help, so the next thing i plan on removing from my diet is legumes.
Exercise–yesterday birdie and i were walking machines. i love the fact that i live in a city that i can complete many of my errands on foot, with my dog. very convenient! i am also taking swim lessons once a week and i love it. as soon as i am able to do the flip turn i will begin lap swimming. pilates are in the works as well. for some reason, i am struggling to build up the courage for this one.
overall, everything still works pretty well but it is disheartening to see progression. just a few months ago i was a 1 on the EDSS scale. they say that RRMS is progressive and that progression is caused by flares. i have never had an all out flare just lots of subclinical flares that cause mild issues, most are hardly noticeable. in fact, at the time of diagnosis i had 12 lesions. i was totally unaware of any of them! i think flares happen subclinically all the time. regardless, i fully intend to be as healthy as i am this year when i update on the second anniversary of my diagnosis.