Tag Archives: symptoms

taking inventory

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.

treatments

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.

future plans

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.

birds and i on an afternoon walk with one of K’s coworker’s dogs. she is wearing a holt anti-pull headcollar (its not a muzzle)

Advertisements
Tagged , , , ,

9/5/11

this is an email i wrote on  9/5/11. one year ago. in a few days i will have been diagnosed for a year. seems like a lifetime. 

so i guess i should begin with how a MS dx was put on the table. i have been having back and shoulder problems for almost a year and i have had tingling in my legs for about 6 months. recently, i reinjured myself at work and because i now have tingling in my hand, the docs ordered a MRI. thats when this all began. the MRI goes on at length about the multiple lesions in my cervical spine and one in my lumbar spine (“confirm MS dx clinically” “further workup advised”). i was referred to a neuro who examined me and then ordered more MRIs that included ones of my brain.

i just finished those on thursday and i am now stuck in a waiting game to find out what the neuro thinks. my uncle is a nurse practitioner in a chronic pain clinic and when he found out about what was going on he called me and wanted to know about the MRI findings. he said he expected them to find brain lesions as well. he apoligized and said he has worked with many patients with MS and given that i have multiple spinal lesions he was fairly sure i would have them in my brain as well.

i am hoping that this will be something else. even when my neuro wouldn’t speculate as to the cause of the lesions, only saying that MS was the most common reason for someone my age to have spinal cord lesions i didn’t lose hope. it was hard to hear it from my uncle, knowing that he does have a lot of experience working with patients who have MS, but i still was not thinking it could be true. however, yesterday i went to visit my mom (a critical care nurse for 30 years) and we were talking about the MRIs and i mentioned that my uncle thought they would find brain lesions. she quietly said, “i do too, honey.” she averted her eyes. at the time we were eating brunch at a restaurant and i instantly lost my appetite. it was SO hard to hear that from my mom.

last week was probably one of the hardest ones of my life. in addition to going through marathons of MRI’s, i was basically ambushed by the drs in the occupational health clinic at work (original MRI was through workers comp). i had two doctors going on at length about how my symptoms were from MS, asking me questions about how i felt, telling me they were going to drop me as a patient because i have MS (even though my neuro has not even confirmed this yet…how do they know? i guess MS patients cannot also have a work-related injury??). i felt completely demoralized after leaving the office. an hour of two doctors interrogating me, teaming up and working off each other to make me feel as awful as they possibly could about my future. i went back up to my unit and cried in the break room…and i am NOT a “crier.” i almost never cry.

if i am really honest with myself then i have to admit that i have had some vague symptoms for quite some time. i just thought that was me. i was seeing a chiropracter and he discovered that i have a positive tandem romberg test (balance issues). at the time, he was trying to convince me that i had this because of a gluten intolerance. but i suppose i can now safely attribute that to the spinal lesions. i have always blamed the chiro for the tingling i feel in my legs. he adjusted me and then later that afternoon i first felt tingling in my legs. now i wonder if the spinal lesions were the culprit and it was just coincidence that it started after the chiro session.

the neuro cautioned me against hot baths, etc. and in direct defiance of what she said, after my appointment i came home and immediately ran a hot bath. when i got out i was shaky and didn’t feel well. same thing happened to me this weekend. i went up to the mountains and had to shut the a/c off when i was driving up a steep incline. by the time i got to the top i was shaky again, and by the end of the day i was completely and totally exhausted. that was yesterday. i slept about 10 hours last night and have done nothing but veg on the couch all day and drink 4 cups of caffienated tea and i am still ready to fall asleep. i also have been having such a hard time with memory. if i answer the phone at work and the caller gives me thier name, by the time they tell me who they would like to talk to i have forgotten it. maybe its just stress from everything going on, but it seems like it gets worse everyday.

i am meeting with the neuro on thursday and i feel like the closer it gets, the harder it is to think about anything else. anytime i am quiet, my mind wanders to MS. the countdown is agonizing. gah! my final year of school…seriously?!

anyways, sorry for going on forever…i’m just trying to manage all of this and get through the week without falling apart.

Tagged , , , , ,

me and you vs. us

for me, being diagnosed changed ALL of my future plans.

at the time i was diagnosed, my partner and i had only been together for about a year. things were good but still at a point where we could take it down many different roads–were we partners? were we just lovers? was it growing into more or receding into less? i had no idea if she would want to stay, i mean, its a pretty hefty diagnosis. so i had no expectations. for her it seems there was no question, or least not one she needed to deliberate on for long–she stayed. right now we are struggling. i am not sure how much the diagnosis plays into that. i’m sure she gets tired of feeling like MS dictates what we do and when we do it. i really try for it not to be like that. i really try to continue to be the same person i was before…but the truth is i’m not.

a lot of times she doesn’t understand how i’m feeling and there are times i really wish she could be more supportive and less quick to assume that i am intentionally doing things to upset her. but then there is also a part of me that remembers how hard it must be to love me, someone who faces every day with the knowledge that all bets are off for my future, and by proxy for hers too if she stays. i have to remember that she is adjusting to this too and she, for better or worse can’t feel what is going on in my body.

it must take incredible amounts of empathy to be a partner to someone who has a chronic illness.

and i’m trying to remember that she is doing the best she can too. and that most of the time she is very helpful and understanding. i just wish i knew how to make things more normal.

Tagged , , , , , , , ,

What a Year (give or take)

i never could have imagined that my 30th year would be so challenging. then again, i never really took the time to imagine what 30 would be like at all so how could i have had any idea?!

it all started with a bike wreck in september of 2010. it didn’t seem like a huge deal at the time. i had some shoulder and back pain but my bike, my laptop, and my brain all seemed to be in perfectly good working order. i went about my business and threw in some PT to get my shoulder in good condition again. i began yoga to strengthen my shoulder but after a couple of months i could no longer sit in the chairs at school without back pain. chronic, aching back pain. and so the spiral began.

i had trouble walking after i would stand. i still had shoulder pain. i could no longer ride my bike or work. my doctor put me off on a 6 week medical leave so that i could focus on PT and not aggravate my injuries. spring break came and i took my first ever trip to mexico with a close friend and my partner. shortly after arriving, i had fatigue that i couldn’t shake and an itchy rash on my back that was slowly spreading. a week after i came back i was diagnosed with shingles. i was then prescribed antiviral pills in addition to muscle relaxers and pain meds.

i began to see a chiropracter three times a week plus PT twice a week. i went back to work as soon as the shingles were healed wearing a back brace and with chronic tingling in my legs. nothing seemed to change the tingling and between the chiro, PT, dr’s appts, school, and work, i barely had the energy to celebrate and enjoy graduating college in may of 2011. i spent the rest of the summer shuffling back and forth between dr’s appointments.

somewhere in the midst of that i learned about a friend’s stage IV metastatic colon cancer. i am still trying to process her very serious condition. it is all so unfair.

at the end of july 2011, i reinjured myself at work helping a patient into her car at her discharge. i have never been in pain like that and i hope that i never will again. more pain meds, more steroids, more addictive opiod medications. i now have quite the collection: ativan, valium, flexeril, vicodin…my 82 year old grandpa takes less medications than i do.

workers comp ordered an MRI of my neck and low back in august of 2011 because ever since i hurt myself on the job, in addition to a worsening of my low back problems, i also had tingling in my right hand and pain in my neck and shoulder blade. at my next appointment the workers comp doctor went over the MRI results with me. given all of the symptoms i was having, especially the tingling up to my waist (used to only be in my legs) i was pretty sure that the MRI would show many disc herniations.

it didn’t.

instead it showed that i had multiple demyelinated lesions in my spinal cord. the radiologist’s impression was multiple sclerosis. all i could think about then was the woman who came into my unit who was unable to walk and had such bad tremors in her arms she couldn’t feed herself. she was 37. that could be me.

what. the. fuck.

how could the last year be so fucking bad?? its as if the people i care about were falling apart in front of my eyes and i couldn’t do a thing about it. i felt so betrayed by my own body and so numb from bombshell after bombshell being dropped about my own health and that of my friends and family.

it was an incredibly tough year. i tingled everyday. i couldn’t walk for more than 10 minutes. i had doctors appointments and workers comp nonsense to deal with in addition to a graduate program and the demands of working on the floor in a hospital unit. i saw two neuros who both agreed that i had MS.

i was so fatigued i would cry myself to sleep. i felt like everything in my life was uncertain. i was half in disbelief that i really had MS and half terrified because it was true. i still have those moments, the “i can’t believe this is my life” moments.

after a fair amount of “what the fuck” time, i got myself together and began to think about what i wanted out of this life. being diagnosed was forcing me to consider that i was not infallible. a notion that had not been challenged thus far in my life. i could do anything i wanted at any time! consequently, there were many things that i put off because i felt like i could get to it later, but lately i have been aware that my brain is a time bomb. that i am a time bomb. in that sense, there was a new urgency in my life that i didn’t have before. what if i can’t travel later? what if i lose the dexterity i need to learn to play guitar? what if i am no longer able to walk and therefore unable to hike the trails i have been wanting to hike for so long? any of those things could happen, or they may never happen. i have no way of knowing. i decided that from now on i have to focus on leading my life with purpose and stop thinking i’ll get to it later.

i also discovered that there was a part of me that was in complete awe of what was going on in my body. it was like there was a little kid in my head watching a science experiment exclaiming “cool!” i hope that doesn’t come off sounding really egotistical or anything…

for class one semester, i had to read the memior of a man who was paraplegic from a car accident called “life on wheels.” after his accident, he discusses how others were wondering if he was planning to kill himself, while he was busy being fascinated with how his new body worked. i can relate to that. maybe i’m just a total nerd looking at her own body as the biggest, baddest case study she’ll ever work on, but in a way its how i feel. i am fascinated with knowing more.

since being diagnosed, i finished a whole semester of grad school under unbelievable amounts of stress, worry, and medication side effects. i’m proud of that. my grades were all A’s except for research ( i struggled with this one because of the MS). the tingling one day disappeared and only shows up occasionally and is extremely mild. i found out that i have an incredible support network around me of friends and family that truly care about me, they are my cheerleaders. and if there is one thing that i appreciate the most so far about having a chronic, progressive disease with only marginally successful treatment options its that it helped me realize that fact.

and there you have it: the story up till now complete with a sappy ending.

Tagged , , , , , , , , , , , ,
Advertisements