u/Bobs_Burgers7

I just had a Specialist remove all my immune-mediated & neuro-immune dx’s from my dx list, in addition to confirmed symptoms and medical findings from their own boss. I then later learned they have a strong conflict of interest in medical cases like mine. That probably being the reason they weren’t the Dr, that I was originally assigned too.

One dx is a severe a Poly-D dx, that was complete with an action plan to avoid further ANS crisis and systemic shock, moving forward (for a routine medication I reacted to).

Now, if I’m an emergency and cannot speak for myself, or can’t due to my Autism, my life is at imminent risk of harm or death, at the hands of emergency doctors; and they will have no clue.

They’re going to pull up the first record on file, and see that there are no concerns.

/rant, that I heavily coded the other day due to anxiety around how I have to now proceed, in order to fix all of this, and protect other patients moving forward.

I’ll probably delete this later but I have 0 people to speak to about this, other than my dr whom is really unimpressed, as per their emails to me. I have to basically stay hush in my real life til it’s all dealt with, as it also includes severe medical neglect, surgical documentation errors, practising without a license, and etc.

Does anyone have a Phal. Orchid terrarium? Specifically, a mini orchid, but not the micro type.

I would love to see photos of your set up.

I collect orchids, but I have recently started to put some plants in terrariums. I was thinking of an open terrarium for a mini Phal.

Can’t say I have stimmed someone else’s stim before, for them 😂😂😂 but today has been the day…

Apparently I’m to keep singing, but I feigned a lost voice.

Out of curiosity, does anyone hear move their orchids to a greenhouse when they drop their blooms, and move ones that are currently blooming to display?

I have a ton of orchids that are currently blooming, but the reality is they aren’t always going to be blooming, and I’m eventually gonna be stuck with a bunch of green leaves.

I was thinking of getting a greenhouse for my laundry room, and moving the orchids into the greenhouse while they go through the other parts of their cycle; and then having orchids that are in bloom, on display during that time. Then swapping them out as they drop blooms, and rebloom.

What are we to do about those roots that are dead, then suddenly become alive halfway down? lol

I never know whether I should leave or clip. I usually leave them assuming that lower half must be doing something.

I am absolutely positive that the neurologist I was just dealing with gaslit the shit out of me, and purposely ignored clear evidence of axonal damage in my sensory nerve.

Despite every other value remaining the same for that nerve measurement from 2022 to 2025, and the measurement being taken at the same place (10cm vs 11cm above the right distal ankle), the neurologist tried to claim the 70% signal drop was likely due to artifact.

….. You can’t sum up a 70% drop to artifact, when all of the other values remain the same.

That’s like running an experiment, and you keep everything the same both times, but end up with a different result.

The act of keeping all variables the same, is the act of ensuring a controlled environment. By every value being relatively the same across the three years, except for that one, the environment is too controlled to chalk it up to artifact.

I have very clear symptoms of axonal die back of the sensory nerves in my legs, my testing shows clear amplitude drop in my axonal signal, so combined that should equate to a diagnosis of sensory neuropathy; even if the most recent result sits just above cut off for abnormal signal (it’s 4.9 and cut off is 4).

Instead of a diagnosis, they told me to come back when things get worse. I already need a walker, and piss myself all the time, I’m not sure how much worse it can get. This is medically negligent imo.

I absolutely hate when a specialist has acknowledged your pain and experience, and then tells you “well the good thing is your results were normal”, when telling you the results of a test you were hoping would give answers.

“It’s not good for me….”, is what I ended up replying with, because what else do you say?

A negative test doesn’t take my symptoms away, or make me capable of getting surgery so that I can return to work. A negative test doesn’t make it easier for me to chase after my kids, stay awake for an entire day, or just exist in life.

A negative test does nothing for me… especially after two years of hoping for a positive one, because it was the only way I could get treatment. Not pain meds, not special benefits, just treatment of the underlying driving force - my immune system.

So yea, good for them maybe, but not good for me….

My mother was heavily emotionally neglectful and abusive growing up, and as a result, I moved out of the home at 16 years old; when I started to date an adult male. My mom did not oppose this relationship, in fact, she helped me move in with him… which is wild to think of now, as a mom to a teen girl.

Soon after, the man convinced me to start a family for him, with the sob story about how his ex is just evil and doesn’t let him see his son, because she and her mom hate him. At 16, as an autistic person, this seemed logical and plausible to me. I’d watched a lot of Maury and Jerry Springer by that age, so I knew some ppl were just toxic to be toxic, and the idea of lying for manipulative purposes never occurred to me.

Fast forward, the usual happened, and I ended up raising that child by myself. I quickly learned why the man didn’t see his other kid, and how it had zero to do with his ex being hateful, or her mom not liking him. He didn’t see his kid because he made no effort to see his kid, which is what he did with our kid too. I ended up raising our son alone, while also attending college, then university; and now he’s a man in his early 20s.

Anyways, that’s aside from the point, but the background is important when I go to explain the following:

The issue here is my mother, and her warped perspectives/memory on things….

This woman has it in her head that I had my eldest son, “so that I could have someone to love me”, and claims I said that to her; despite having 0 reason to, because that was never the reason, and I don’t think that way. She has claimed this a few times in front of me, and every single time I shut her down and correct her.

Yesterday, she literally said it directly to my son... She told this full-grown man, that his mother only gave birth to him because she wanted someone to love her. She said this with the biggest shit eating grin on her face, like she thought it was funny information that we were all going to tee-her about.

I immediately shut her down in front of my son, but I haven’t gotten a chance to even see if he heard her, or talk to him about that. If he reflects on his life, it’s very obvious that is not the reason, but I also don’t want him to question if it is.

I don’t think she realizes how fucked up that is to say to someone, and what that can do to them and their relationship with that parent. I also don’t think she realizes that saying that implies a massive parental failing on her part, if I felt so inclined at 16 years old to have a baby, just to have someone to love me. No 16-year-old should feel that unloved….

I don’t know how to address this, but I know I need to. I have a feeling that the way I need to address it with her, might result in her giving me the silent treatment for a while, and feeling greatly offended; but it’s not worth protecting her feelings, at the cost of my son’s. I’m sick of this shit, and I don’t need her continuing to say this as life goes on.

TLDR: Grandmother told grandson that his mother only gave birth to him, so that she could have someone to love her; with 0 evidence to support that theory. Unsure how to address it with her, as she has been corrected multiple times, before she got to the point of saying it directly to the child in question.

Is NP amp comparable to P-T amp?

Or O-P amp?

Can you compare NP to P-T accurately to get an idea of any progression, or would you have to compare NP to O-P?

Ty in advance!

Has anyone been determined to have damage to their dorsal root ganglion, and that be the reason they have dysautonomia?

I am having textbook small fiber neuropathy issues, which has later included significant dysautonomia to all systems. That said, my skin punch biopsy came back at 9.7 (still considered normal though lower than avg for my age). The neuromuscular specialist is stating that my NCT/EMG is normal, even when looking at the longitudal changes that include an amplitude drop of 70%…

I also have 0 reflexes which isn’t normal at all. So now I’m looking at the DRG, and trying to figure out where to turn for testing of that. So if you are diagnosed with a DRG related issue, how did they test you for that?