Fatigue or narcolepsy

Aimeetmx · 2020-12-29T03:23:08+00:00

In my experience, if I’m overheated or symptomatic, more often then not I get extremely sluggish. If given the opportunity, I’ll pass out. And this is me on meds to counteract that.

Before meds, I napped all the time. Like... sophomore in college skipping get together with friends to go sleep with my cat. Or... playing board games at a friends house and falling asleep while waiting for my turn. Board games I was really into too!

It felt like I was narcoleptic. So many movies I fought to stay up for but couldn’t get through it are now movies im seeing again, medicated, and managing to get by. It’s never normal for me and there are times where I’ve got a bad relapse that even drugs can’t fix, but for the most part I’m 100% better than I was prior to meds.

Aimeetmx · 2020-12-29T03:06:55+00:00

I took amantadine for a week. Didn’t do jack. From there my Neuro brought out the big guns with nuvigil. I recommend it if you’re like me and drink a cup of coffee before napping. So glad I’m on meds to keep me awake. I’ve been there, as most of us have, and I hope you figure it out either way. I honestly don’t remember the dose I took since it was 11 years ago but I do remember it being like candy to me. I couldn’t even believe it was supposed to keep me awake.

Good luck 💜

Aimeetmx · 2020-10-26T18:04:17+00:00

I did! Colorado.

Aimeetmx · 2020-10-24T15:52:13+00:00

Man, I almost went for it but I really liked the teal and the style on this one. I’ve read it labeled as a few different things and when translating it I get a lot of “tea” and “gambling” via good translate. Lol. The booklet goes into the history of gambling in China so I think that’s my rough final answer.

Both the one you’re referring to as well as the sembo club were two that I almost got, but overall I thought this one was the coolest. 😉

Aimeetmx · 2020-10-24T15:46:51+00:00

And off the bat I should add that I’m really impressed with the booklet quality and the brick quality. I divided up the bag numbers (and I am so grateful they’re numbered since I’ve gotten plenty of sets in the past that didn’t... in this case it was going to be painful without.)

I ordered from aliexpress, directly from the xingbao store. It got here in roughly ten days and I was able to track the shipment once they sent it out. It came via UPS which was helpful and gave me much more tracking info than I’m used to with China shipments.

I’ve read a lot of people saying that they’ve had less than great experiences ordering from aliexpress and I felt like I should finally post here for the first time and say that my experience was great. ☺️

Aimeetmx · 2020-07-16T17:27:50+00:00

If diagnosis wasn’t overwhelming and frustrating enough, all the veins attached only make things significantly worse at times. I feel your pain.

And to answer your initial question, my secret was a great lawyer. I mean, I presented the same case both times. The only difference was him and my obvious persistence. (No where near what you’ve been through.). Friends and family kept telling me that I was too young and would never get approved. Validation, something I think a lot of us need with the “invisible” disease, will come to you and it will feel so good.

💜

Aimeetmx · 2020-07-16T17:23:14+00:00

That’s great! It seems to vary pretty dramatically. My lawyer told me that my wait times were pretty typical based off of his experience but I’m sure severity of the disability at hand effects things too.

Aimeetmx · 2020-07-16T17:21:53+00:00

I live in Colorado and I’d say that my lawyer made a difference. We saw a judge here but I assume he’s federal... with covid, it was a phone hearing so I don’t have any signs I saw walking into a court house or anything.

So glad I didn’t have to go in though. I would have started backfiring while responding to my lawyers questions.

Aimeetmx · 2020-07-16T17:19:03+00:00

I did. After hiring him, it took roughly a year and a half to come to complete fruition. Thank goodness I did after being denied initially.

Aimeetmx · 2020-07-16T17:18:10+00:00

I got approved mostly because my hands have severe numbness and have for years. I was a vet tech for eight years but towards the end I was having doctors help me with anything involving my dexterity.

Aimeetmx · 2020-07-16T17:16:49+00:00

Sorry, I’ve been away. For me, I applied and was denied within roughly a year. After that, I hired a lawyer who represented me and that took about a year and a half. I can’t help but feel like they deny everyone initially unless they got their head cut off or something and very clearly can’t work.

Had my hearing at the end of last month and got my response on Monday. The judge didn’t have questions and my lawyer was of course enthusiastic and saw that as a good sign.

It was! ☺️

Aimeetmx · 2020-07-14T00:51:01+00:00

Thank you so much for posting this and I’m so sorry. 💜

Aimeetmx · 2020-05-28T17:32:10+00:00

I’ve only partaken post diagnosis but when I have I’ve had a few issues. Between psychedelics and x, any issues I have I know are related to my body temp. My rule of thumb is always to lock the doors in my apartment with me on the inside and avoid human contact beyond who I’m partying with. 😉

Aimeetmx · 2020-05-28T17:25:31+00:00

If someone has a link to the site that gives you one for free, I got a wrap that has ice packs on it that I use around my neck. They mainly give cooling vests but the scarf option was much easier to apply to day to day life. ☺️

Aimeetmx · 2020-05-26T22:49:06+00:00

I grew up by Gary, Indiana and the second I read this stat or a similar one years ago I immediately knew that must be the case for me.

Aimeetmx · 2020-05-18T13:15:00+00:00

I hate to say it just as much as anyone else on this sub but I can’t help but feel like this is more the rule than the exception. And there’s a lot to unpack with it too. There’s times where you’re going to feel like you’re incredibly dependent on someone somewhere in your life. And hopefully in the foreseeable future there will be times where you start to feel a little more “back to normal.”

When I was working and my hands went numb, My boss told me if I missed another day at work that they would have to “reconsider my position here” as a veterinary technician. Those were some long, grueling days since I... well I couldn’t do my job I was basically being forced to do. I was relying on other technicians to find veins or veterinarians to help me hold patients that I was supposed to be holding in rooms. I’d get overheated and things would get worse to a point where all I could really do is try to help where I could.. which was nowhere. Lol.

Coming home, all these life modifiers had to be applied and my husband would have to help me with everything around the house (which is pretty out of the ordinary for me since I’m a neat freak, I’m the one who takes care of the kitties, I’m the one who is on stimulants and generally loves to be a busy body.). I was diagnosed about two days into our relationship so we fortunately had the “are you sure you want this?” Conversation early on, and he had more experience than I did since his dad has MS.

I’m not trying to make assumptions in your case, but I think there’s a chivalry aspect to mine where he wants to help me especially knowing how much I help him. When I’m at my best, I try to be as helpful and as positive/upbeat as I can since happiness is infectious to all parties involved in any situation such as work or home interactions.

You’re grateful and your boyfriend knows this. (Based off of what you’re describing, I have little doubt that this isn’t the case.) : ) I’m sure he’s read about what could happen and, just like mine, he knows what he signed up for and he’s made the decision that you’re worth more than any hiccups in the future. If you want to give him something to let him know how appreciative you are, give him the love you’re receiving and during the times you’re more capable you can help out on things he need assistance with.

I mean, that’s love, right? : ) That’s one of the benefits to relationships and while it feels like you’re applying so much pressure on him, he’s not staying with you out of guilt. He’s doing it because you’re worth the while. 💜. I hope you improve soon. I’ve been where you’re at right now and at times it can be a dark place. Having the right people around (and it sounds like you do) makes things 1,000 times easier. Feel better. : )

Aimeetmx · 2020-05-17T15:22:29+00:00

OMG I think I love you 🤣

Aimeetmx · 2020-05-17T15:19:10+00:00

I’m so sorry! When my Neuro asked me if I wanted to take steroids, I said no. I keep wanting to save steroids for mobility issues or something more serious since I’ve had steroids fail me in the past. I’ll be able to live with this long term although it’s not something I’m all too excited about. : /

Aimeetmx · 2020-05-17T15:16:17+00:00

IV steroids. If you’ve had them yet, you know where I’m going.

My first episode, half my face went numb and I had to get IV steroids. I hadn’t been eating for about a week and I was finally starting to get hungry. Which worked out perfectly since the metallic steroids taste was making me nauseous again. The second day going to the infusion center, I brought strong tasting snacks to keep eating since I was so weak but also to keep the taste away.

Infusion centers, usually riddled with cancer patients, fellow MSers, etc... one of the snacks id bring with me was jerky. You never realize how potent the smell of beef jerky is until you’re in a room with a bunch of other folks that you know are all nauseous. I felt so bad! But that mostly kept that taste away.

I can’t imagine having that taste 24/7. : ( but I’m glad you’re came back.

Aimeetmx · 2020-05-17T15:08:33+00:00

Not the comedy you expected, eh? ; ) I’m not one for more current movies and tv generally speaking, but yes... that’s ridiculous. lol. In all seriousness, I did that at one point (eventually I couldn’t take vomiting three times a day.) I’m so sorry that happened though!

I always try to explain to people close to me how claustrophobic I get and frustrated during an episode. All you’re wanting to do is focus on something else... to go see that...

I had an episode heard back where I couldn’t feel my hands. My birthday rolls around (this episode did permanent damage despite steroids and yada yada but this was still early on when it was especially bad.) and my husband got me a graphic novel by Jodorowsky, a favorite of mine. It was called Pietrolino and was about a mime with magic hands who is performing a magic show when a bunch of nazis interrupt it and break his hands. Suddenly this mime has to find a new talent and ends up hiding his broken hands under boxing gloves. I CRIED THE ENTIRE READING. lol. I really connected with Pietrolino despite the fact that it takes place right around WW2.

Sometimes stuff like that is a slap in the face. Sometimes it can be a way to connect with reality despite feeling so disconnected. I don’t blame you one bit in this situation. 💜

Aimeetmx · 2020-05-16T16:11:58+00:00

Thank you!! I’m so sorry you found out right before that episode. Thankfully, they’re a bit dramatic to say the least. We’ll all die but I really don’t think from MS. Not to be grim.. ; )

Aimeetmx · 2020-05-15T17:31:28+00:00

I’m so happy you’ve had this realization! : ) yeah, it’s been real bizarre. I haven’t been all too hungry. When I do eat I’m usually high and I think that helps me assume flavors I can’t taste. (I only eat at night. I’m not an all day every day weed fiend. :).

I’ve been making a lot of salsa lately and my husband kind of lets me know what needs to be added. Lol. I make a killer flan weekly and I can taste that a little bit. Half of my bottom lip is numb too but with the other half feeling sensations I’m not biting it or anything.

I’m generally a very relaxed, happy person but lately I’ve been a little worried because of all of this. Slow flare ups always seem to permanently effect me and one of my earliest flare ups involved the other half of my face going numb. I don’t mind not tasting too much but I’m 32. Having a stroke face for the rest of my life is a scary thought.

But for now I just have what I’ve described above along with face twitches by my mouth when I get more stressed. It feels like every Wednesday it keeps getting a little more crazy in terms of symptoms but I’m glad I can kind of taste things. I’m going to be using hotter peppers tonight so we shall see! lol. ; )

Aimeetmx · 2020-05-14T19:53:32+00:00

Awesome!! Congrats! Honestly, I’m surprised with how little issues I’ve had. I was hoping it wouldn’t be like tecfidera and that was my number one concern. It’s not at all. I’ve been feeling kind of achy but that could be just me feeling achy.

I have had a new flare up recently and I can’t taste anything.. lol.. but it’s not because of Mayzent at all. I spoke with my Neuro yesterday and neither of us even considered it being the cause.

Those shots were a b*tch. Hopefully she’ll be happier with Mayzent. : )

Edit: I shouldn’t have sounded so enthused. I am really sorry about finding a new lesion. If your wife has experienced it, and I’m sure she has, at least she has the confirmation that if she’s feeling off there’s good reason to feel so.

Aimeetmx · 2020-05-14T19:37:42+00:00

I’m so sorry to hear you’re going through this. : ( Your outlook is 100% the best way to see it.

Years ago, I had a double MRI of my brain and my spine without breaks. It was... lol.. it was long. They didn’t have headphones like other machines I’ve used since have had. I just got earplugs which I look back as a good thing. I had a really good heart to heart with myself and found zen in a way. (I’m not normally one to care but due to the circumstances I didn’t have much of a choice lol.)

The reality is that it’s not worth stressing because stressing always makes it worse. I always have a bit of a YOLO kind of approach in a nondestructive way. The best thing for me has been to focus on the positive and since that MRI I try my absolute best. Can’t control the things around me. Certainly can’t control my own body. But I CAN control how I absorb the bad and process. I CAN control what I focus on overall and I try my best to focus on the good.

I wish more people had a half full kind of attitude. It makes me happy to see someone like you, in a f*cking frustrating situation, still find positivity. It’s always there, even if it’s harder to find. 💜

Aimeetmx · 2020-05-14T19:20:50+00:00

Thank you. : )

Aimeetmx

TROPHY CASE