u/Bi0_Nerd

More anxiety than a vent…but I am venting, too. Need support not judgment for sure.

I’m disabled and we recently had to move into a pretty inaccessible apartment so that SD14 can go to a good high school and walk to and from the school. There were better options but she wouldn’t have been within walking distance, which was a must for my husband.

He has since realized he may have made a mistake in being so vehement about location, but we can’t do anything about it for at least a year…and even then we most likely will just stay until she has a license and a car…

SS20 just got home after two years of missionary work. I love him, but because he was older when we met, and because of how his personality is reserved, it’s just awkward between us. He’s staying with his grandma and aunt/uncle, but because he doesn’t have a car yet, DH is driving him wherever whenever.

To say I’ve been taking a back seat is an understatement but he’s trying. We finally had our first date in a month, despite his crazy ex screwing with custody. I’ve been a moody mess because the apartment doesn’t have ac and I’m heat intolerant. The bedroom has a portable ac, and we don’t have a couch yet, so I live in there.

I can’t easily do the dishes.
We had to have our bathroom and closet doors removed and I still can’t get my wheelchair into the closet.
I can’t reach the washer and dryer without standing for a liner period than is safe for me so I’ve fallen over a few times, ouch,
It’s too hot to be in it of the common areas.
The entire apartment staff thus far has been rude, incompetent, or both.
I can’t get to the gym, or dog park, because half of the complex is too far up hill for my power chair.
I can’t get to the mailbox without going halfway down and around the complex, and wheeling across traffic.

It goes on.

I sacrificed this all for SD, and I would do it again because I love that kid and I want the best for her. I just need to vent because sometimes it sucks. I still feel like we should have moved somewhere better for me, and DH should have driven her to and from school. I know that would cut into the work day, but he’s self employed so he’s able to fix his schedule.

Anyhow, now he wants full custody. I’m sort of terrified because 50/50 on a 2-2-5 has been a lot for both of us. If I were able bodied, maybe it would be different. I just can’t navigate this apartment. It’s exhausting which makes parenting more exhausting. I am far from wanting to be child free and not a nacho woman. So I’m feeling less than capable and therefore anxious about potentially having more custody.

Has anyone else been told their epilepsy could be related to autoimmune causes? I started having autoimmune disease issues as a child but they got worse in my early 20’s. 20 is also when I had my first seizure. The neurologists went back and forth for nearly a decade, putting me on medications, taking me off, diagnosing me with different forms of epilepsy, then removing my diagnoses completely. My current neurologist did a three day home EEG, and they did find the deep area of abnormal activity. The area made sense with my seizure types. (I have a few kinds.)

The issue was, medication would work for a few months to a year then stop working. I’d need a higher dose or new medication. I am on a really high dose of Keppra and a standard dose of Vimpat now, and I still have some episodes of auras. The only breakthrough seizures have been during major flares of my autoimmune diseases when I’m not sleeping well or managing my fluid intake well.

Recently, neurology tested me and found out I have anti-GAD antibodies. Initially they thought I had Stiff Person Syndrome, and I personally still feel I’m in that class of issues, but I’ve been told I have “an anti-GAD mediated hyper-kinetic disorder.) My neurologist also thinks this could be a reason I’m having seizures. They keep saying I was negative for these antibodies previously, but I don’t recall having the testing. In any event, I do think it makes sense.

Just curious is anyone else has been told their epilepsy is autoimmune or immune mediated in some way.

I rarely get hungry. I’m tube fed and it’s been mostly fine for two years…but my hormones have been wild and it’s made me have cravings on and off for the last few months. (Not pregnant just issues with birth control.)

I hate it. I’m allowed to drain, but I hate having to feel sick, and I hate the process altogether. Basically, I wish I didn’t have to feel hungry when my stomach just rejects it anyhow.

I have allergies to Compazine and Reglan, and my doctors are hesitant with promethazine since I already have a movement disorder. I’m living on Zofran, and while it works a bit, it doesn’t work long enough. My other option is to vent (I have a GJ) but I’m trying to limit that. (It’s been hot and I’ve had to run feeds slow so my hydration isn’t at its peak.)

I find the scent of lemon helpful. Peppermint is mid at this point. Pressure point stuff does nothing for me. I’m in the U.S., so my options are limited to US things. Sometimes I cave and take over the counter motion sickness medication to see if it’ll help but rarely. (I do sometimes get relief from antivert but it really depends.)

How do you manage your nausea if you’re someone with allergies/limits? I’m not asking for medical advice, I’m judging seeing what others try. For me, not laying down but still elevating my feet can help. Cold packs in the neck have been a life saver. In the hospital when it’s really bad they sometimes use Ativan, and it’s been helpful. They don’t do the often anymore which I understand but also struggle with. I am one of the fizzy drinkers, I can’t do flat drinks for some odd reason! I know it’s game over if I try something too cold, too!

I’ve been so thirsty in this weather but man have I had to drain because I’ve made myself feel so sick with the ice pops and slushees!

I flowed up with my neurologist today. He’s confident the movement disorder specialist was wrong about FND, especially given his testing and my other diagnoses. He said that low anti-GAD is still anti-GAD, and that my video with jaw locking was clinically significant for some sort of anti-GAD mediated situation.

SPS isn’t the diagnosis, but they do think anti-GAD antibodies contribute, and they my other auto-inflammatory disorders contributes as well.

I also have epilepsy and ataxia which they believe is GAD related, potentially.

ETA:

I’m relieved because I knew the FND diagnosis was incorrect. I’ve done the treatment for FND and got worse. Only IVIG and immune suppression has helped. The reason I asked for GAD testing was that I had to stop immune suppression for four months and that was when the neurological symptoms got a lot worse.

Anyhow, the first specialist my neurologist sent me to, moved me to the comment disorder clinic where that doctor was viciously rude. She started attacking my established diagnoses and recommending yoga and veggies, going on and on about how grateful I should be to have FND, when I knew I didn’t have FND.

My neurologist feels it’s too random to have established autoimmune and auto-inflammatory issues and then neurological issues to the level I do. Plus, IVIG and thorough immune suppression betters my condition enormously. I still can’t walk, and I’m definitely not great with being startled haha, but it’s been managing things for years.

EDIT 2:
I’m staying in this group, I need the support and it makes sense to stay.

This is part of the note from the specialist, who noted that she spent only 20 or so minutes in a telehealth visit with me…

“referred to neuroimmunology clinic for concern for stiff person syndrome to due to a history of muscle spasms and positive GAD65Ab in the serum. We reviewed the diagnostic studies. GAD65 antibody units of measurement vary widely depending what lab is testing the antibody. For example, most labs outside of the Mayo Clinic use international international units/mL, in which the GAD65ab titer to be associated with neurologic disease is about 10,000 international units/mL. So the ARUP lab result of >250IU/mL is not meaningful for neurological disease. When checked through the Mayo Clinic which uses nmol/L, the value was 0.39. In my experience, GAD65 antibody levels using this unit of measurement are more likely to be significant when closer to 100 nmol/L and can be even > 1000. Therefore, the difference in labs/unit of measurement account for the different values of serum gad65 serum antibody levels and neither are clinically significant for neurological disease. Furthermore, she had absent CSF GAD65 antibody levels, lack of evidence of intrathecal antibody production or inflammation. Therefore, she does not have a GAD65 antibody associated CNS disorder. “

So that’s what I’m fighting against I guess. I also guess my GAD65 and associated neoplastic panel were negative in 2016…but I don’t feel that super matters. I was having jerky movements at the time but not locking up.

I have a note from the movement clinic stating it’s FND, which I need to have removed from my chart, too. Worse? I could be forced to go to that hospital’s ER if something happened to me. It’s why I need my notes amended somehow.

I know 0.39 is low, but it still showed up as elevated which my neurologist who had been treating me for over a decade feels is valid. Moreover, he said a positive value of any kind, matters, but so do my actual symptoms. Over the years of treating me, he has seen my gait changes, gotten my seizures under control, and stopped a hospital from sending me to hospice. Basically? I trust him over a doctor who didn’t have all my labs or results, and saw me via Telehealth. No exam.

As for the second doctor at the movement clinic…I have nothing to say. Her goal was to I be invalidate me from five minutes in.

I have the option to go to another movement clinic for evaluation but I told my doctor that I’m fine with him treating me unless it gets worse and he wants me to see someone else.

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.