u/Bi0_Nerd

I’m writing a goodbye and a thank you. I spoke with neuro immunology and based on how low my GAD was from Mayo, and my negative CSF, she felt confident that I didn’t have stiff persons.

I don’t know why I have so many muscle spasms. I don’t know why I lock up. I don’t know why any of it happens or looks like SPS, but she wants me to see the movement disorder clinic. Between the ataxia, having Tourette’s, hyperactive reflexes, and having had dystonic reactions to meds, she feels something genetic or something in the dystonia family is more likely.

It’s odd to be disappointed but Valium was working, and I truly felt confident after the initial GAD, but she said if it’s not over 10,000 on that test (if only goes to 250) and the Mayo test was low, and I didn’t have any abnormalities in my CSF, it’s not SPS.

Whatever it is you personally send, thoughts, prayers, vibes, whatever, send them my way. I can’t keep having these episodes, and haven’t been able to go to a gym in a year because of the shaking and spasms it produces.

When he told SD, almost 14, that we were getting married, she wanted to be there. She had a wonderful reaction to me in my dress. It had been so beautiful to be in these kids’ lives for the last few years. His son is 20 and has been gone for almost 2 years, but is coming home soon!

TW: loss
We tried for an ours baby, but I have health problems and it leads to my body not handling pregnancy well. After few losses, I leaned harder into what I could do for his kids.

End TW

I just wanted to share a win. Us getting married is huge for so many reasons but it’s nice to also have more definition to the family unit.

I’m in Vegas, I get married tomorrow…my pump I usually charge overnight and I didn’t pack it. I doubt it’ll last 48 hours, what do I do?

TL/dr; Has anyone had a Telehealth appointment as their first appointment with neuro-immunology?

Rant:

I’ve been waiting almost six months…and they called two weeks prior to let me know they needed to reschedule. I could wait two additional weeks for a Telehealth appointment or 6 weeks for an in person one.

They made it sound like appointment one being online didn’t matter. I’m just so tired and my PCM had been managing Valium for me, but they’re only able to do 10mg per day. It’s enough sometimes but I’m only on 30mg of Baclofen per day, which hasn’t ever been enough.

I have to have the records from my neurologist and hospital sent to this new hospital and I’m finding it stressful given other life events. I’m lucky they tried IVIG at random for another disorder I have and my neuro issues improved, but like 8 months ago they discontinued my immune suppression medication and my body went rogue. I still get IVIG. They did a double dose shortly after I had high antibodies show up. It stopped the repeated locking up, but I’m still having tough spasms.

I just want this to work out with the specialist. I’ve waited so so long.

I’ve had yellowish tinged formula colored fluid draining heavily from my g port even though I’m fed via my j port. Friday it was replaced after like 8 months, but flipped immediately or wasn’t placed properly. They struggled but got a new one in and supposedly deeper into my intestines to reduce flip risk. I just don’t want to go back to the ER, but I have felt pretty awful. I’m having IVIG treatments so it’s hard sometimes to tell what is making me feel worse. I had photos, but I don’t see a way to share which might be for the best.

I suppose I can do a tube check at IR, but it’s infuriating. If it flipped again I don’t know what they’ll do.

Any better ways to check? I don’t have food coloring yet or I’d do the blue dye check .

Friday I had a feeding tube exchange. I don’t do well with them, and the sedation wasn’t so sedating. I went home and couldn’t get my rate up. I began vomiting severely. I opted to stop feeds and drain for a bit instead. I drained and formula was coming out of my g tube. Great.

I spent all day Saturday in the ER, and they showed it was coiled in my stomach, so they used a longer j portion to replace it with. The doctor said that hopefully the longer j will prevent it from flipping. He also said vomiting badly can cause it to flip. Except, I was vomiting because if flipped.

I’m trying to give myself peace of mind and just convince myself it was poorly placed. It felt bad when they flushed it and I flushed it, like it was never fully in my jejunum. I can tell if it’s my duodenum, I get violently ill. Last time it was there it eventually went into my stomach and even ended up poking up into my esophagus.

I just would rather have had a poor placement than know I can flip even danglers this easily. My last flip was a low profile that spun like helicopter blades.

I’m in the middle of diagnosis, so nobody really uses too much caution when medicating me. I also keep gaslighting myself out of it being SPS because a few doctors have said they have doubts. (Mostly since I already have something rare so they don’t think I should have another rare disease.)

Today I was having my feeding tube changed and I couldn’t take my morning meds because I was being sedated. I should have. I had expected whatever they gave me to relax my muscles, but I ended up worse off. They used fentanyl (which I should have asked prior to that they not use a pain killer as they always make me feel horrendous.) They also used a small dose of versed and then some Benadryl due to potential allergies to the dye.

Not only was I very much not sedated. My back decided to twist during the procedure. I was in pain from the procedure which was making me stiffen in reaction, which only made the stiffening of muscles I can’t control kick in. It’s 10 hours and my one leg is still having small and medium spasms you can just watch ripple up and down my leg.

I’m not sure what made it this awful. I had just assumed sedation would = relaxed muscles but I’m in hell now.

Was it the stress?
Was it the meds?
Has anyone else dealt with sedation making them feel worse for a while?

I guess I just come here to dump and see if anyone else is feeling the same level of, “what the hell nervous system?” as I do haha.

Not really a vent, I can laugh at this stuff now, so more of a what the hell moment. It was new extension day, my favorite, because the floppy alarm inducing extension is swapped for a new stiffer one that will hold out for a few days before being floppy, too.

I get all hooked up, I’m in bed, and I feel damp, but I check and all my ports are properly closed etc. Weird, but I assume the Velcro I use to keep the tube secure is still wet from a shower.

I’m about to fall asleep and I realize I am REALLY wet. Now I’m extra annoyed, and loopy from sleeping meds. I realize it’s formula, and panic that my tube itself is failing. Thankfully, I find the issue…my extension is leaking. It’s screwed in properly, but while I’m checking, the tubing of the extension just falls right off. Cue me pinching it off, shouting “no” over and over, and trying to sort out how to prevent leaking all over as I get into my wheelchair and rush to the bathroom.

I’ve had a variety of leaks over the last year and a half, but it’s usually the feeding bag, or the port on the tube itself. (My g port can leak small drops if it’s under pressure.)

Enjoy this weird one (at least for me.) If you’re reading this still, stay dry today haha!

I’m in the, “new chair every 5 months,” club. I just got my chair in November. Custom manual with a power drive. Great.

Except…I’ve recently been diagnosed with stiff persons syndrome, abs on top of that severe arthritis in my right wrist. To spice it up I have a cyst inside of my main wrist bone so big it’s taking up most of the bone at this point.

Even power assist at this point isn’t doable a lot of days. My grip strength is so bad, and sometimes it’s gone all together. My phone is the upper limit of heavy for me and I can’t even hold that one handed most times.

Now, add in stiff person spasms, and the fact reclining is needed, and I’m sitting here wondering if there is a point in looking into a power chair or if I’m just totally screwed. I have an out of pocket motorized chair but it isn’t comfortable and causes pain with any use over 1-2 hours. It’s small, and if I spasm in it I’m hitting the floor.

I guess I just need feedback if anyone has received a chair and within a year had their condition decline to a point where they’ve desperately needed modifications to the point a new chair made more sense.

Having more of a commitment ceremony than a wedding and I’m wondering if hiring a local photographer is cheaper than a package somewhere. We are legitimately only doing a ceremony and photos, no guests or anything, so someone doing photos on their phone and a few after withs camera, would be more than sufficient. (It’s born of our second time getting “married” hence neither of us really wants anything big.