All about Multiple Sclerosis in In which I put all things Multiple Sclerosis (MS)

So, since I’m already here on this lappy with wordpad open, copying and saving info I need to know but never wanted to - imma kinda cheat and write an entry as well. Then yall can see what I learned about my diabeetus. But first, what I learned about the OTHER thing wrong with me - ya know, that other incurable disease that’s just moving right along? Yep, well it might as well be flood waters in TX the way it’s taking me down with it. I mean, I almost wish I had never gone to that Neuro appt. and the doc I saw had never even told me. Ignorance is bliss, afterall. I would know!! Moreso now than ever! I didnt even think it was possible, but I have gotten dumber. Just call me a Trump supporter! HA. No offense, pull yer panties back out ya crack. Anyway, I am asking Laura how to spell words that I know I knew how to spell. There’s not much I couldn’t, save for those ones nobody uses anyway. lol. I mean like, for instance the word appetite. No offense to anyone who can’t spell it, but for ME personally, that is like kindergarten. And I keep having different people tell me I already told them a piece of info, or a story, etc. I mean, yea, that already was happening, but it has gotten exponentially worse. I don’t even know if I spelled that right. Ugh. OH and me, Mrs. I know all the numbers just fine? (laura says it’s because its a diff part of yer brain that handles em. I have always remembered numbers - phone numbers, what someone owes in dollar amount, shit like that) I COULD NOT REMEMBER THE NUMBERS OF MY STREET ADDRESS IN THE ER THE OTHER NIGHT!!! Now, that nurse may not have understood the significance, but believe me, I NOTICED. So let’s play a game. Haha, I totally said that in Saw guy’s voice. Let’s see how many symptoms I have now! lol I actually seriously have no clue,,, this should be equal parts fun and horrifying. OOh I promised a friend I would post a pic, can’t forget! lol the struggle is real.
1) Pain (sometimes I know why, sometimes I just hurt all over for no reason.)
2) muscle spasms - Yea, umm.. these HURT. Mostly get em in my calves or feet, but I have had them in as weird a spot as my boob before lol.
3) Muscle weakness/fatigue - I wasn’t strong to begin with, but it’s gotten ridiculous. Not so much like if you needed me to help you carry something, but like, my legs are getting weaker and weaker. It seems like they just don’t wanna support me anymore. It’s especially bad in the shower due to the heat on top of it. Yes I rinse w cold lol. And yes I am getting a shower chair thru insurance this month. :)
4) Numbness and tingling - OH my fav! I call it a cell phone on vibrate. When it’s like that. But then there’s the times I get stupid and let a limb fall asleep. Hell to pay then! You know when the blood starts coming back and it feels like pins n needles? Not for me - NOTHING BUT HORRIBE PAIN! lol The numbness I don’t mind so much, its not painful. The weirdest thing so far is when only a part of my but was numb, on one side. (MS usually only attacks one side at a time, I guess it’s just busy that way ugh) When something is numb on me, I usually think either I am wet, or I am warm, like when I would use the toilet, half of the seat felt like someone had just been on it. Maddening!
5) Trouble walking - Other than what I mentioned about my legs, I also have an awkward gait. Sometimes I will even look drunk for a few. But since I walk weird, I have compensated with my other leg and now that added another problem of both hips hurting, with the right one being the worse. I do have xrays coming up w my new doc. :) It just sucks because I am a side sleeper and our bed sucks. So a lot of the time I wake up with hip pain…
6) Blurred or double vision - This was the main thing that convinced me something was wrong. I was seeing two of everything because my left eye had crossed in, I also had horrible pain behind mostly my left eye, and when I previously got checked by the optician, I was suddenly color blind for no apparent reason. Scary shit back then.
7) Poor bowel or bladder control - Bowel doesn’t apply, and I have also seen this symptom listed as including not just control but retention, which is the worse problem I have in this area. I can wake up after sleeping all night, sit on the toilet, and only after I strain and force it (yes I sit there for a while lol) the most pitiful amount will come out. I strain to pee most of the time, or it doesn’t happen, and if I’m in public it gets embarassing because um, other stuff happens that you can hear when you strain like that lol. GRR. lol This is one of the things that bothers me most. I used to have an irrational fear of getting a catheter put in… not anymore, since I’ve had one so much. I think the hysterectomy did stuff. Prolly have to deal with it eventually. And having diabetes on top of it means I also have to worry that my kidneys will fail, or I’ll get ketoacidosis. Imma buy some of those tests from walmart. Anyway.... still so much more to cover! rolls eyes lol
8) Cognitive and emotional problems - Uh huh. I take a pill specifically so I do not cry. That’s how I can tell I haven’t taken it yet, I get weepy. I would cry all day long if not for it. And the cognitive I don’t think I need to explain, I’m dumb now. lol. I lost around ohh 20 IQ points and prolly more now… and have the memory of a goldfish. But hey, rewatching shows/movies is awesome! lololol Oh, and my longterm memory is still OK. Thank Amy! <3 If I couldn’t remember my mammal I really would wanna suicide all over… ha OK, I am actually at the end of this so called “complete” list of symptoms but that’s OK, cuz as it turns out, I am a weirdo, who happens to have 5 of the 6 “rare” ones too! You can’t make this stuff up lol.
9) Itching, extreme! lol. Yea, I see phantom bugs crawling on my body like a regular ole crackhead. I can actually feel it moving, the tickle/itch, and then look down, see there is absolutely NOTHING there, and feel/watch as it moves up my arm or wherever. You know what? It feels just like a real bug. And sometimes there IS a bug there, but RARELY haha.... I get an rx called Atarax to help me with it. No Benadry will do. Sometimes they actually double as a headache remedy. Which remind me.....
10) Headaches - yea, THIS is a rare symptom. Like, really? Our brains/immune system is attacking our (sometimes, like me) white matter in our brains and eating the protective coating from the nerves that run there! And you think it’s RARE that sometimes it hurts??? I’m pretty much 99% sure that’s why I started getting the dame things at SIX years old. Poor baby me. LOL. I wanna take my brain out and massage it. To be fair, I should mention that it doesn’t help that I have always had sinus issues since a young age. I even would get nose bleeds like, it was no big deal. Still have bad sinuses. So yea, but come on! lol
11) Choking/problems swallowing - OK, so I will just choke all outta the blue, just, on my own spit that I barely make enough of. lol Don’t get me started on if I am drinking something. This symptom has returned as of late, but before now, it did go away for quite a while, so I am happy bout that. It’s embarassing to all of a sudden be coughing so hard it looks like you’re gonna die when you’re in public lol. This symptom is responsible for death in MS, when people aspirate food/drink into their lungs and get pneumonia or infection. Nothin to play around with. And yes, this is “rare” #3. lol
12) 4th on our “rare” list is breathing issues. I freaked the fuck out when I experienced this horrible symptom for the first time! So what happens is that in MS, your muscles will atrophy probably due to ya know, you ain’t feelin like partyin no more lol. So some of those muscles that get weak and have trouble working is the chest muscles right where your lungs are. It’s actually not as bad as it sounds, it’s more scary than anything. What happens is because you’re not breathing with strong muscles anymore, you can’t take that deep of a breath. You breathe differently, it ends up being more shallow breaths, and if you don’t understand what’s goin on, it feels like you aren;t getting enough air. What I had to learn to do when it happens, (thankfully, this “rare” symptom actually lives up to that and stays away usually. Ive prolly had it maybe 4 times. Not bad.) anyway, I just have to calm down, after I realize that yes that is what is happening, and then remind myself that I AM in fact, getting plenty of air. I’m not convinced that this symptom is entirely a muscle issue, and might have an anxiety component. nods lol I promise we;re almost done. lol. This is more for me to look back on anyway. Who knows what I’ll be missing tomorrow right?! Ugh.
13) The dreaded “MS Hug” - I am extremely HAPPY to say that, although while experiencing this, I wanted to claw my own eyes out it was that painful, but Thank AMY it has been a stranger and not something I have gotten real personal with. lol. So, it took me maybe a day or so to figure out whether this was in fact the hug or shingles. I DO get a cluster of shingles that recurs on the back of my leg, so it wasn’t a stretch to think so. And that shit HURT!!! I mean, that’s how I would describe it, if you’ve ever had shingles that go around your chest right around boob/rib cage level, u know. It just aches. And it’ll like get real sharp from what I remember. I could NOT wear a bra or anything, and was incapacitated for a couple of days. Went to the doc, she said not shingles, went home and cried. I had always feared this symptom, but I guess it got the fear knocked out cuz i handled it. It has been back to visit unfortunately maybe 5 times. It doesn’t seem to stay as long as the first time tho. :) It’s funny what you can catch yourself being thankful for right?! lol. Yea, oh, I was only in agonizing pain a few times, ya know, with THAT symptom. No big. haha. OK, now I’m starting to have to think and make sure I didn’t miss anything, oh daaamn I just thought of TWO more at least omg… this is gonna be sobering…
14) Drop foot - I thought bout just lumping this in with leg issues, but it is very unique, so I wanna document it. When I got this symptom, I had gone to bed the night before just fine. Nothing wrong. Well, ya know. ha. When I woke up, I went to get out of bed and found that I couldn’t walk pretty much almost at all on my left leg. It was like dead weight. Course I was scared, this was the first time I’d developed a significant symptom that affected my mobility. I was so upset. I didn’t know it at first, but that’s how my very first “Relapse” happened. Drop foot is where you go to walk, and the muscles in your calf are so weakened from spasm that they aren’t working. You cannot flex your foot to take a step without dragging your leg. Mine hit me real hard, I had it very badly. I went to the neuro and he was testing my foot, and running this metal thing up my foot omg I am so ticklish, but my foot was dead. He said that was a bad result obviously. Other symptoms were numbness on my arm and leg, worsening of old symptoms like I was exhausted! It took me forever to walk anywhere. They made me a brace, gave me over 3 days of high dose steroids, and by the time I left, I ended up abandoning the brace lol. It took me quite a while to recover from that relapse. I didn’t feel like myself or even human again for almost 2-3 months. It had been 2 years since I was diagnosed. I was surprised, really, that it took that long to relpse. It kinda made me think there was a chance my disease wasn’t as bad as some others. U can’t compare any two MSers. If they do have the same stuff wrong, it’s a miracle. Usually we are annoyingly unique. My friend who was actually diagnosed before me, has mostly mobility and body problems. However, her brain function is untouched. And I can easily say I would trade with her, but you don’t know. Grass is always greener on the other side right? lol. And we’ve talked about the fact that we can’t understand each other. We both get it. There is no “better set” of symptoms. They all are equally horrible! Laura always bitches at me because I don’t put stock in them magically coming up with a cure. Why would I? Do it, make it affordable in the US and widely available, with proof because I’m a skeptic, and THEN I’ll get excited. And if it cannot UNDO what has been done? Well, I really don’t see me getting much benefit from just stopping the progression, when it’s progressing this fast. I don’t have TIME for them to find a cure. It’s too involved. And I’m not gonna get my hopes up every time some scientist makes a claim. Sorry. Lemme know when you can help ME. Until then, I’ll be here I guess. lol. I know it could be worse. Laura and I had a heart to heart tonite and she said she is stressed because among other things, she needs to get better because I’m sick and getting worse, etc. But hey, I may not have much time left to enjoy it or BE this well, but right now, I am walking. With no cane. Some people can’t say that. Some people got this and were immediately worse, way worse, of course I’m sure yall know, than I am. But I did find it humbling/sad that there is basically no difference in PPMS and SPMS. Only difference is how we got there. So I have a ? When I get worse n shit, am I then gonna be rediagnosed as Primary Progressive? Like, is there another level? lol. No, I know that there is one more that is worse, that you have to just have already. PRMS. Progressive Remitting. In my opinion, it’s way worse than mine or PPMS because not only are you getting worse, but you are still having to deal with fucking relapses! Ridiculous. At least I somewhat know what my future holds. Slow progression. I hope. I didn’t even finish making the list. I forgot tremor, and my new symptoms since being rediagnosed. So, about 6 mons or so ago, I started noticing I had this jerk that was not in my control. Think Parkinsons. So, two different things, a tremor that comes on right when it’s inconvenient, (if I am using my hands, they shake, making it impossible to like button my shirt, etc. It only happens when I am using them tho. I also have HORRIBE control of the fingers, etc of my left hand. My right hand can make it look like the scissors from rock paper scissors, and even copy how they move, ya know. Move your fingers apart and back together, easy. lol. Not for my lefty! It gets real comical tryin to do it. It’s like that movie”Idle Hands” lmao. But not funny. lol OK, so I do have a new symptom. Lately, when I have been getting hot, my skin will start stinging. It’s miserable. Not only that tho, my brain damage has gotten way worse. As well as my memory. Laura said she was noticing that, when I was trying to make her feel better about me just falling apart lol. Yea so, new stuff is legs worse, stinging, jerking of hands, oh def my bladder can’t forget that, brain worse, memory worse. Damn I just thought of yet another symptom. I should write my own “complete” list lol. It’s fatigue! Duuuuh.... lol I’m not gonna post my diabeetus research anymore, maybe as a seperate private entry. I didn’t mean to write this much but damn the symptoms! Ok Imma go count now… I’m scared. Imma make yall count on your own haha! Nah, if you read this far, you DESERVE a break! Go, get you a nice snack and relax. I’ll prolly think of another symptom lmao. OK here I go. Love you all, and kudos like a mug if you read all this! <3 <3 Hope you’re all well! Haha - You know I couldn’t leave w/out one more! lmao INSOMNIA! Uh huh… I do NOT have that problem tonite so I shall see yall manana.... <3

Alright so I’ll be nice, not that any of you care by now if you’ve made it this far! I think, personally yall should have a glass of wine. lol
So the number of symptoms that I have gone thru at some point or another is 15. I kinda thought it would be more. lol....................................................’‘’‘’‘’‘’‘’‘’‘’ 99999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999
And that, my friends, is what a kitten standing on a laptop keyboard looks like haha… damn Figgy! OK so, experienced ever - 15
New symptoms that I have never experienced before - I think 2… I’ll check. That would be the skin stinging w/heat, and the parkinsonian jerk. OH! And my legs not wanting to hold me. That IS new, I mean even with the foot drop, I could still be supported.
So -I’m also gonna include the fact that I forgot the numbers of my address because I have NEVER had problems with numbers in particular.
And Hip pain. OK so jesus this is really fucking with my ocd need to wanna organize anything written. lol

So 15 symptoms experienced
5 new symptoms noticed before rediagnosis
10(! the fuck, man?) symptoms i have experienced but have either come back or gotten worse in the last 6 or so months. I didn’t realize it was that cumulative or that bad. FML.

Last updated October 01, 2017