I couldn’t decide if this was better as a page or a post. A post won out. I can always update it, and this way it is always at the almost-beginning of my archives. Win-Win. Originally Started 09-24-2017, Edited & Posted 4-29-2021
This is going to get pretty long. It spans actual years. If you have MS, or suspect MS, I bet your story does too.
On top of MS (multiple sclerosis), I have EDS (ehlers-danlos syndrome), was dx with fibromyalgia (which may have been early-stage MS? It’s such a “I don’t know what’s wrong, here is a label” catch-all diagnosis), suspect I have some mild MCAS (mast cell activation syndrome), and know I have some mild POTS (postural orthostatic tachycardia syndrome) going on. There is more, a whole house full of so-called special needs. We just call them needs.
I’ve always been public. I love social media. I love my imaginary internet friends. My Punky Moms who have been there almost since the beginning of my parenting journey, who have turned into my Tribe. (Don’t talk to me about appropriation of Tribe – I’m Jewish, we all descended from one of the 12 Tribes). Why is that worth mentioning? It means I had a pretty reliable web of sources (my own posts!) to use to pull my story together. I’ll use block quotes to format my posts, the dates listed underneath as the source. For the purposes of this post, the source is always one of my social media channels. Let’s Get Started!
September 24, 2017 was the first time I posted about what I now believe to be my first major “relapse”. I hate that word. It implies something came back, something back-slid. This was the first “flare up”. The first time my nerves betrayed me, but we had no idea what it was at the time. My post read:
Have what I think is a pinched nerve (I threw out my back *last* week, and while that is ok and just needed some time, I have developed some partial numbness (think compressed nerve/pins & needles but the part right before the pins & needles start) from my waist down. I can stand, walk, etc.. with no problems. It just feels weird and I don’t like it. It’s worse when I sit, so I’m standing a lot.
9-24-2017
I had a lot of suggestions on that post. Everything from see a chiropractor (at the time I was seeing one every two weeks anyway) to yoga to seeing a doctor or going to the emergency room. I ultimately phoned my GP, who called in a prescription based on my description of symptoms.
Have been prescribed gabapentin. Anyone have any experience? Using it for non-diabetic neuropathy. Have to get through today before I can start it as it “may cause drowsiness” and I have things to do today.
9-25-2017
I’m gonna get personal here. I mean, I have kids. You know I’ve had sex. Disabled people have sex. Humans in general, with some exception, have sex. So I’m here to talk about sex.
When you want to have sex, but your numb from the waist down 😞 Btw, this makes even just using the bathroom kind of exciting in a bad way.
September 27, 2017
I was just commenting to the husband the other day that I was shocked I haven’t peed the bed. Yet.
Still numb.
September 30, 2017
Gabapentin is bullshit. My feet feel ice cold in my head but aren’t cold at all to my fingers. My legs and hips aren’t that bad, but still quite numb and causing problems of it’s own. I can walk. Driving is exciting (I drive stick, my timing is off). So over this. I’m phoning a different doctor tomorrow and my doctor to let the office know their drug didn’t do anything except make me cranky and tired and that I’m consulting someone else.
October 1, 2017
Gabapentin is absolute shit. I know some people who it has helped, but I seem to know more people who had similar reactions to me. Whether that means whatever we were treating wasn’t a gabapentin issue or something completely different, who knows?
We happen to have a family friend who is an infectious disease specialist. Not exactly what I needed, but a doctor just the same. He’s a smart guy. So I called.
When you get over yourself long enough to call said family friend doctor (who you feel bad for phoning, on top of hating being on the phone in general), and he tells you he doesn’t have office hours today but to come over to the house tonight, and you say you’re unavailable until after 8:30PM and will have the youngest with you, and he says to bring them too, they can play with the cats and dog 💗/runonsentenceofdoom
October 2, 2017
I didn’t time stamp, but these were posted AM/PM.
When your friendly trusted second opinion tells you to get to a neurologist asafp, to stop taking the med your gp put you on, and tells you your gp is an idiot. (ETA I don’t think this was said in seriousness, but was based on a script given based on a phone call and not actually seeing me. Maybe I’m the idiot?) Sigh.
October 2, 2017
I called my GP the next morning and asked for a neurologist referral.
Got a referral to a neurologist. Who can’t see me until the 12th, but I’m on the “cancellation” list. I’m so over today.
October 3, 2017
The the time I was working at my child’s dance studio as the front desk/office manager/whatever you want to call it person. I spent most of my time sitting down and behind a large desk. Shoes weren’t a huge issue, but I did try to dress nicely and not wear flip-flops 😉
Suggestions for big, comfy, soft, *black*, work-appropriate shoes? I usually wear the best Fluevogs ever. But they have a heel and I’m not comfortable wearing them right now. Tennis shoes, even though I *know* they aren’t tight, feel super confining. I have three different styles and they’re all not right, right now, even my slip ons. I am currently most comfortable barefoot or in Haviana’s (flip flops) right now. I can’t wear those to work. Even socks aren’t comfortable 😞 😞
October 3, 2017
Life went on. I was not taking any medications. I still hadn’t actually seen my GP, but I had seen *a* doctor. I have now been mostly numb for 18 days. Not pins & needles, but fully can’t feel anything numb. There were no cancellations at the neurologist, so I was playing the “hurry up and wait” game. I can’t stand that game.
I can feel the ends of some of my toes and the very very backs of my heels! My legs are still mostly numb and heavy and my feet are totally numb in between and feel weird af, but I have tips of my toes! 😂😂 As Michael said, good, that means it’s not permanent! I popped some extra anti-inflammatories last night, maybe they made a difference? It was more than I should have taken 😞 but I felt awful last night. I see the neurologist tomorrow morning. Fingers crossed!!
October 11, 2017
Have to have some blood work, a ct scan (because mris are terrifying!), a nerve test (that I can’t get in for until the end of November), and she also mentioned Guillain Barre and that she felt it was under-diagnosed especially when it’s “mild” but that she isn’t positive it’s that. She did mention it comes in fast and dissipates slowly. No meds bc while she could treat pain, she can’t bring back feeling. Bright side, she totally said it’s not something awful. I do still have that little bit of feeling back in my toes, so I’m hoping it continues to come back. I’m still exhausted. Not sure if that is lingering from the cold of doom I had over the weekend, or if the exhaustion brought on the cold. But the cold is gone and I am no longer overrun with mucous.
October 12, 2017
I spent a lot of time looking up GBS, posting to the (very small) GBS reddit group, and generally freaking myself out because Dr. Google says everyone is dying. Also, GBS is terrifying. I didn’t have a better answer at this point. Life went on.
I pulled something in my neck/shoulder while reading. Reading. As in, just sitting there. Reading. All the sudden I can’t support my head when not perfectly upright or move. Reading is dangerous. Who knew? So now I’m covered in Tiger Balm and hoping it’s better by tomorrow. I have things to do. For those not paying attention, my weird leg numbness was preceded (possibly/probably not related!) by my pulling my back out.
October 29, 2017
I don’t seem to talk much about what is going on for the next month. Lots and lots of Hurry Up And Wait. I will say, sometime between now and when I got the EMG I mention next, I started getting feeling back in my legs & feet. Because why not, just in time for a test to check nerve conductivity, they start working again. Kind of.
EMG came back fine! Yay! I’ve been slowly getting feeling back so I had a feeling (haha) it would. She said nerves can repair themselves so she can’t say if there wasn’t demyelination and it’s repaired now? But yay normal nerves! I’m still not 100%. I’m still tired a lot. But driving is easier since I can feel the clutch and walking isn’t nearly as “shuffle-y”. I still don’t like how socks feel so I’m still in my zaide slippers 💗 or my havianas.
November 20, 2017
I’d like Jenn from 2021 to interject real quick – Jenn from 2021 found out that EDS also comes with demyelination. Moving away from Jenn said… I had no idea. Decades of knowing what EDS is, knowing how to handle my own body, and I find out that it too can cause demyelination. Science is it’s own kind of magic sometimes. It is kind of insane to me that my own body is trying to take me down from the inside. Not cool body, not cool.
December rolled around and I started going numb again. I’ve been driving daily. I’ve been working. I have shit to do, so I handled it like a boss, all the while my body is playing like it’s going on strike.
Going numb again. Neuro said she can’t find anything and to “come back if it gets worse”. I get that every single test comes back normal. Not being able to feel my skin is. not. normal. But of course everything shows as fine, because, hey, why should anything be pinpointably wrong? That would be too easy. I can’t afford to chase after new doctors and more tests. Especially if it’s something that cycles (seems to be) and I can only get appointments when it’s “a good week”. That emg took two months to schedule. By which point I was feeling much better. And a week later I was feeling poorly again. I guess I should be glad it’s not affecting my internal organs and shut up about it? Fuck this new normal.
December 6, 2017
It is amazing what hindsight can provide. December 2017 Jenn had no idea. Living in a blissful little bubble of “maybe it’ll get better soon” and not treating it with steroids or anything strong than anti-inflammatories. 2017 Jenn was absolutely adorable and then life went on.
Malachai and Michael had the flu. Michael still has a cough. E is now on tamiflu (E didn’t have full blown flu but was a day or so away and the doc started it instead of waiting). Dorian has a sty and has an ophthalmic ointment. I’m having a bad fibro flare. Clothes hurt. Everything I’ve eaten this week has caused stomach pain. Is 2018 over yet? I am so over all the sick.
February 8, 2018
I always feel terrible when my fam feels terrible, but I am so grateful I tend to not get colds. Don’t get me wrong. I was ridiculously susceptible to things like ear infections and bronchitis, just not colds.
But wait, there’s more. And it’s hilarious. And I still call them…
Cabbage Balls Can’t recall the word phrase of the day
February 13, 2018
to this day. Ever have a moment when you can’t remember when something is called and your brain substitutes a description? Brussels Spouts are absolutely Tiny Cabbage Balls.
I have another big jump. Which can only mean I was feeling considerably better as I didn’t feel it was worth bitching about to the void that is “online”.
I am clearly feeling better than I have in [nearly 12] months. Except my feet. Fuck my feet, which used to be unbelievably ticklish and now I’m excited I can feel heat/touch on them. Although I can *feel* them, so that’s a HUGE improvement!.
August 16, 2018
See, big jumps. February to August. August back to February… I know I was still working. I was still wearing big fluffy shoes. I haven’t worn real shoes or socks since September of 2017. I was a shoe queen. Now I wear Haviana’s or slides all the time. Life starts to get exciting here. My oldest was ready to head off to college. We went apartment hunting. I have this problem of insisting I am up to anything I want to do. I sure did go not feeling anywhere close to 100%
Not everything was awful. My feet were still pretty numb (not completely, but enough for this!) at this time, so being the opportunist I am, we totally took advantage and tattooed the tops of my feet. We went to Epcot and saw Tiffany. We went to see local productions of La Cage & The Producers. We went back to Epcot and saw some more bands. We went to Maryland for a funeral. We did things. Life went on in the way that only Life can.
My hips have been out of whack all week. Sitting hurts. Standing hurts. Stairs hurt. And I’m headed to Tallahassee with D tonight to go apartment hunting 😂 six hours in the car? Pshaw, steady supply of pain relief and someone else driving so I can stretch out my leg? We got this.
February 28, 2019
Apartment hunting was a total success. I made it through OK. I was mostly there for moral support anyway. Then I had a four month health reprieve. Then it was time to go on a trip to celebrate that same child’s graduation and I started to get sick and I refused to even call the doctor until we got back. What can I say, I’m stubborn and likely assumed I’d get another earful of “we can’t do anything” (which I did).
My foot/leg/hip numbness seems to be back and is creeping its way up again. I’m not even calling the doctor until we get back from celebrating D next week (um, unless it hits my ribs, then I’ll bump it up). Last time was “wait and see” anyway
July 3, 2019
I didn’t call the doctor when we got back from the vacation. I don’t have any other notes, but I’m guessing it didn’t get “bad enough”.
When running a lint roller over your legs (pants) to get the white dog hair off makes your skin hurt…. welcome to my life.
August 14, 2019
I’ve been a wreck for most of the last two weeks. Driving hurts (I drive a manual, my left foot doesn’t always respond correctly anymore/I can’t always feel where the clutch is when my nerves get like this and my right arm aches just holding my phone lately).
August 21, 2019
Looking back, that is the beginning of me not driving whenever possible. It was the beginning of what turned into a big flare. The Flare truthfully. A lot was going on in my life at this point, but nothing as stressful as say, a death or major illness. I lost of my job due to the company being sold and the new owners not needing me. My kid was off to school 400 miles away a few days before. So stressful? Yes. Enough to bring on a flare? I still don’t think so. But then this happened:
So I’ve had vertigo for days (since 9/06), and double vision, and nausea after a bite or two of food (or a whole meal if I force the issue bc I’m hungry). I woke up this morning and couldn’t focus at all for a good hour and when we went to Home Depot to grab something for the a/c I realized there is no way I can drive. Like two roads kind of double vision. Michael took me to the GP. GP has me “Cha cha” in place with my eyes shut and I drifted towards Michael (to the left). Standing still I was making a circle with my upper body. Dr Google says lots. GBS came up tho – what the neuro said a couple of years ago. Something new or just a new way to present? GP did mention a virus could cause it – same with gbs tho 🤷♀️ I’m essentially home bound until this clears up. I can’t drive safely. Which also means my job search is on hold. This screws up everything. Legit. I’m angry I can’t read. I mean. So much more. But mostly… I read a lot.
September 9, 2019
I basically am reading with one eye closed. It’s giving me a different kind of eye strain.
I have a ophthalmic appt Friday, neuro Monday, and ct the following Friday pending approval from my insurance.
I can’t drive. I feel like I’m walking drunk when I’m out anyway. Everything moves and it’s jarring to say the least. At least at home I know nothing is moving and I know where to expect it bc I’ve lived here so long.
We have tickets to see the Pietasters Friday night. And I am absolutely going anyway. We’re going to Disney Sunday to meet Dorian for his birthday (it’s Saturday) since it’s half way, so I’m wheelchairing it up. So no lie, everything sucks and I’m hoping these two events don’t suck. My dad and siblings are helping with M & E getting here and there in the evenings while Michael is at work. Today is the first day since this started that I’ll really be stuck in the house after 12. Even this sort of worked out, Sara was in an accident a couple of weeks ago (she’s fine) and her car is in the shop this week so she has dad’s car bc she didn’t get a rental for the duration of the body work from the insurance so she has dad’s car so dad has my car.
It just took me forever to write this. Legit, I spend my day reading. I’m bored LOL I’ve been listening to a lot of nature sounds and binaural beats in an effort to not be depressed, anxious, irritated, etc… open to Spotify suggestions!
September 10, 2019
At the ophthalmologist. Eyes are perfectly healthy. Left eye muscles are weaker and causing the double vision. Seeing a neuro Monday and a ct scan Friday. Waiting on paperwork to take to the neuro. Said I can likely drive with an eye patch. Arrrr
September 13, 2019
Just left the ophthalmologist. Waiting at the chiropractor. I’m glad it’s been a productive morning. I’ve been getting restless stuck at home. Good news at the ophthalmologist, not ready to make a public post yet. Not dying. Not worried.
This is my newest BadAssJenn moment. I was sick. In retrospect… I should have been at home, in bed. Instead, I was in downtown Ft Lauderdale at midnight to see a band I hadn’t seen in 20-some years. It was amazing. I spent the night leaning against the wall or leaning on the bar. It was a small venue, I couldn’t find a chair, I was dizzy, nauseous, couldn’t really see, and kind of miserable, but I made it work.
2021 interjection: This is also the second to last show I saw before Covid19 happened. No lie, I am quite pleased it was the last full show we made it out to. I really miss live music though.
Saw Pietasters, in the middle of a relapse that I didn’t know what a relapse. Spent the night leaning against a wall/against the bar in an effort not to fall over. Vision was still shit. Worth the show. That is all. I couldn’t let go of the bar tho 😂 no pit for me.
September 14, 2019
Had the mri. Ativan and a plush eye mask was fab. Trying to get through to my neuro to schedule an appt.
September 27, 2019
Clearly I wound up in the MRI this time instead of a nice, non-panic inducing CT. I had all the Ativan. It is the only thing that gets me in the room with the MRI, let alone actually inside of it. It is less claustrophobia – I am fine in elevators or small spaces – and more a problem with being able to exit quickly.
Doing well looking straight ahead to read. If I deviate to the side at all my vision goes to shit. Still dizzy but not as bad as long as I keep looking straight ahead (but it’s not an ear issue causing the dizziness so I assume it’s what I am seeing causing it? Except it doesn’t go away if I close my eyes LOL) The smallish patch of “I’m numb but I itch” on my side is growing and I want to address that with the neuro too but she said to expect it based on the gbs dx from a couple of years ago. I enlarged the text on my phone bc bigger text equals easier to focus on. Sara almost made fun of me and refrained bc medical not old 😂
But legit, I feel better I think, but I’m still stuck not driving (the idea scares me right now – what would I miss or overreact you know?), so I’m bored. And I’m not sure if I am really feel better or if I’m just adjusting. Which would blow.
September 2019
We went to Red Ginger for dinner. I was ok, but about halfway through it got super loud and I got super overwhelmed. Did the math for the tip, added to get the total, and then couldn’t check my math to make sure I added correctly. It just suddenly didn’t make any sense.
I remember that dinner. I was very distraught I suddenly couldn’t make sense to the numbers on the receipt.
Stabbing pain on R side of head
October 6, 2019
This was the beginning of my shiny new migraine problem. I went from never having headaches to having debilitating migraines. Except they weren’t full blown migraines yet and I didn’t understand why my head ached all the time.
Possible consult with another neuro bc I don’t want a spinal tap. And another MRI. But she said I have spots in the right places, they’re just small. But she’s like 80% sure it’s MS and is almost ready to start with meds. Wants me to see a doc who only does MS before that.
October 8, 2019
So I need to borrow another $250 for another mri from dad and try to find a way to tell him this. Which is the actual hard part.
My dad cried bc he asked when I called to invite him to lunch. So I told him to clean his face and we picked him up. His dad had MS. My cousin has MS. I told him the doc expected a 90% chance to get back to 100%, and my last flare she thought was gbs was two years ago. And I clearly feel way better than I did even 3 weeks ago.
Spoiler: I never made it back to 100%
I’m so tired. And bored. And broke, I haven’t worked since July and I’ve run through all of our savings and borrowed from dad. My bills aren’t decreasing and I feel awful draining his slush fund. My attention to detail is shot right now. My memory is shot. And I have a headache all the time that Advil has stopped touching, it isn’t light or sound sensitive but it does get worse under fluorescents.
October 9, 2019
I was living on Advil. Then I discovered Advil Migraine. Then I discovered regular Advil with a potassium chaser since that’s all Advil Migraine is and a bottle of potassium and a bottle of Advil is cheaper than Advil Migraine.
My legs are mostly extra heavy today, which also sucks, because stairs. You know what also sucks? I have a strong urge to just get up and walk. But I do and my legs are full of fuck you very much.
October 10, 2019
I started using social media to track symptoms for a while. A lot of this is exactly that. Symptoms with little explanation or commentary to go with it.
Right leg has been weird – started on back of thigh – can feel temperature. Everything feels warm, even if it feel cool on the left (ie- the toilet seat was cool on the left and warm on the right). It has spread to the whole leg – tiles feel cool under the left foot and warm under the right. I can clearly feel a scratch with my nails but temperature isn’t working. Right leg also feels heavier/thicker too, like right before pins & needles.
October 20, 2019
The numb patch on my right side has grown to be most of my back and stomach. My right leg, foot feels like it did 2 years ago – but only on the right.
October 23, 2019
Spine over right side feels like laying on a heating pad.
October 25, 2019
Remember how I said the MRI freaks me out? The MRI still freaks me out. They didn’t give me a mask. I failed to ask for a mask. I also failed to keep my damn eyes closed.
Out of the MRI. It sucked. I made the mistake of opening my eyes. Then I closed them tight (I forgot to ask for the fluffy mask) and pretended I was at a rave bc the mri machine sounds vaguely like edm. Have I mentioned I hate that tube? It isn’t the sounds. It’s the fucking “ceiling” 3 inches from my face. It. Is. Not. Ok. Fingers crossed this one is conclusive and I can get a proper dx and start some Rx and find a job and move on with my life.
October 29, 2019
I am just exhausted. I felt so good the day before yesterday, even my dad commented I sounded more “awake” than I had the day before. All my joints ache. I close my eyes just sitting here and zone out and “rest” but it isn’t restful. The neuro called me yesterday but I didn’t recognize then number so I didn’t answer. She left a message that was semantically null and to call back on Monday. Michael said he heard it to say nothing is life threatening and we’ll handle it on Monday. I’m wondering why a call was needed when I have an appointment set for the 12th. What couldn’t wait? I eyed my MRIs. I saw what wasn’t obvious in my brain scan but is clearly obvious on my brain stem and spinal column.
November 2, 2019
My birthday is November 5. The doc asked if I could come in on the 5th and I asked if we could do it the day before, just so it wasn’t my birthday, you know? As it turns out, it didn’t matter if it was the 4, 5, 6, or any other day. It was still MS and it was still a trash bit of news to get.
It’s MS. Kinda knew going in 🤷♀️ Starting daily meds tmm. My bp was high at the neuro. I had to explain it wasn’t the neuro but stress over my uncle’s heart replacement. Still tired. Still ache. But pretty happy its MS and not GBS, so there’s that.
November 4, 2019
I was so relived it was not GBS. I know how that sounds, but MS is potentially so much less scary than GBS. It felt, and still feels, more manageable. I laughed at that appointment, in relief it was “just” MS.
So a little bit of silliness on a stressful day: My new med is a half dose all this week before the full dose next week. The capsule is just half filled and when you shake it it sounds like a maraca. Which I of course do before I eat the damn thing. Every. Single. Time. Constant headache behind R eye – stabby
November 6, 2019
I’ll get into it later, but I took Tecfidera until December 2020, and I shook that damn pill every single time. It never got old. I swear I had posted a video of me shaking it, but I guess not to IG. So just take my word for it, it shook like the tiniest maraca ever and made me smile twice a day.
Putting my mop of hair into a braid this morning kicked my ass. Not washing it. Not drying it. Just putting it into French braid to keep it out of my face.
November 13, 2019
R eye twitching, back very tight, terrible colon pain
November 15, 2019
I am ridiculously red today, but I still agree it’s a good day for a good day.
December 10, 2019
My medication does this. They call it flushing. They say to take an uncoated ibuprofen 30 min before the pill to help prevent it BUT it doesn’t happen until 3-6 (sometimes more!) hours after I take it, or the 30 minutes after they predict. ETA: I take this twice a day, roughly at 10AM & PM. By the time it subsides I’m taking another pill 😡 It’s hot. And prickly. And creeps starting at my ears and sometimes extends down my arms (sometimes being now). It also kills my stomach a few times a week. They say to take an antacid to help with that except it also happens hours after I’ve taken it. It’s not a stomach acid problem, it’s a colon problem. I am going to bring it up to my neuro but I don’t see her until January. The manufacturer calls often, the speciality pharmacy calls often, I have mentioned these things but all their side effects suggestions are for like 30-60 min within taking it, not hours and hours later and they just ask if it’s impacting daily life. Well, generally no. But that doesn’t make it suck less. I wind up laughing it off and saying I hope the benefits outweigh these side effects, but I’m starting to wonder. I was in the middle of cleaning and got so hot and prickly I had to sit down and try to cool my skin off 😞
Assume stomach pains 2 – 3 times a week. Flushing/body heating up about the same. Headache behind right eye is usually 4 – 5 days a week, but not always debilitating, just painful.
December 17, 2019
My block quote formatting is about to jump out the window. Look for bold dates and “//” as separators. Much of this is daily notes I started taking in a digital planner in an effort to log my day to day to show my doctor.
Jan 11 – 17, 2020 Laryngitis. But here is the fun part – we were on the road for another funeral. I put a call in to a teledoc because I thought it was something worse and they said it was “just” laryngitis and did not need antibiotics. I had to travel for the funeral, I lived on OTC cold meds and throat lozenges and warm drinks. // Jan 21 – bed day // Jan 29 – bed day // Feb 5 – elbow pain, heavy legs, bed day // Feb 6 & 8 – bed day // Feb 9 – stomach pain // Feb 10 – nap // Feb 11 – flushing, prickly/itchy // Feb 14 – stretch class day before – ache, hurt, can’t lift arm, nap // Feb 16 & 17 – ache // Feb 22 – headache // March 11 – lazy day // Mar 22 – pain abating, numb growing, R leg weird // Mar 24 – face feels bruised & broken out // Mar 26 – no improvement // Mar 29 – R leg still heavy & not responding properly, side still numb & spreading // Apr 7 – R leg numb // Apr 10 – R leg numb, R side/stomach/back numb // STOPPED MAKING NOTES? GUESS I GOT TIRED OF NOTING “MINOR” ACHES & PAINS? // May 24 – felt a hair on my face, there was no hair // May 25 – same re: hair // May 29 – been way overstimulated lately // June 21 – long nap // June 24 – strain in E eye, not migraine, ache all day, can’t focus to read // July 1 – took M to orthodontist, had a moment of what road am I on/did I miss my turn/it passed pretty quick, but I *noticed* it // July 2 – Nap // July 5 – bed day // July 6 – awake 2:30 to 6, late nap // July 8 – awake 3 – 6 // July 10 – lower backaches major flushing, legs heavy on steps, flushed after both pills today // July 11 – no full flush, but prickly feeling // July 22 – legs more than ache, less than hurt. Stairs sucks // July 26 – inner arm huts to touch, spread around to outside as day went by, skin hurts like an abrasion, also to push in // Aug 3 – exhausted // Aug 15 – R fingers slightly swollen, can’t hold anything last day or two; 1AM woke up, flexed hand back and stretched wrist & it popped back into place // Aug 19 – 2 hrs to next Tec, skin flushed // Aug 25 – Tec itchy, took allergy pill // Aug 26 – very hot, bed all day, skin radiating heat, not sick // Aug 28 – unbearably itchy for an hour/90 min. Took allergy pill , not sure if it helped // Aug 29 – v prickly 1 hr after tec // Aug 30 – early pills, v itchy // Sep 2 – flushing // Sep 5 – arms asleep, L leg asleep at wake up; v itchy after tec // Sep 7 – been feeling kind of sick right below ribs for a few days; up at 2 AM, R hip ache deep inside, back hurt, shooting pain down leg. Still hurt @ 4 & 6, still sick at 7:30 // Sep 8 – still sick/nauseas // Sep 9 – woke up nauseas // Sep 13 – 19 back has been super tight & painful (Note Oct 27 – has been pretty continuous, more in later dates) // Sep 20/21 – nauseas, right under sternum area // Oct 4 – v tired of feet always a little numb, esp. after warm shower // Oct 8/9 – back pain // Oct 12 – back pain, can’t bend over, can’t stand from sitting, can’t lift anything, ok once seated but then have trouble getting up // Oct 14 – called a bowl a package “can’t fit the food in the package” // Oct 16 – bad flushing // Oct 18 – 20 – been low key nauseas all week, not exactly sick but hungry and disinterested in food bc/ it upsets my stomach // Oct 21/22 – backache, nausea // Oct 23 – flushing, starts at crown of head, works down to face/neck // Oct 24 – L elbow in pain at bedtime; backspin // Oct 25 – legs heavy // Oct 26 – posted pics @ noon, flushing down to ribs; backspin throughout day; R hip ache // October 2020 R hip has been a pretty consistent problem, think thats EDS not MS. Been walking ~½ mile a night, maybe every other/every third day legs & feet are tingly/numb by the time we get back and are heavy to get up the stairs.
Had a lot of days without notes. Missing lots of R eye strain/headaches, mainly in late sep/early oct. Headaches/eye pain often coincide with high hr alerts on watch, which started popping up again recently.
Been following the election closely and not documenting. couple of mild headaches, muscle ache, lower back pain has been consistent. Fingers have been swollen upon waking, hard time bending fingers, they hurt/are numb for an hour/90 min after waking.
11/6 – rolled my left ankle 11/7 – still sore
I stopped tracking symptoms. 2020 was trash for everyone. I was relatively healthy, other than side effects from the Tecfidera and some gnarly back pain and intermittent aches & pains. Ok, relatively healthy in a I didn’t have a full blown relapse kind of way. I eventually had my yearly MRI done, including a new scan of my lumbar, and nothing new showed. Go figure.
I stopped taking Tecfidera in December 2020 and switched to Kesimpta, but that will be a post of it’s own as I am trying to move forward and not stay stuck in the past.
I will catch up to more recent things in other posts, but this sort of wraps up the beginning years of having questions to having an actual diagnosis. As always, feel free to ask me anything. I am so far from having all the answers. I might have an answer. I might just have an ear. You never know.