Neurodegenerative Disorder Puns

My doctor thinks I may be able to get a lawyer involved but I don’t know what that entails or what kind of lawyer I would reach out to.

The treatment is very expensive (intravenous immunoglobulin therapy). It is off-label. My insurance is calling it “experimental.” Since my neurodegenerative disease is so rare, there is no go-to treatment. This is all I have; there is nothing “on-label.”

Is there anything that I can do? I have been fighting them since April of this year and received denial after denial. Meanwhile my disease is getting much worse. Eventually it will affect my organs and become more than just a pain disorder.

I have done the entire appeals process, I even got a second opinion to support us. I have a patient advocate. I got a case manager with Blue Cross. I looked into clinical trials. My husband and I pressured his HR representative to talk to Blue Cross. I even went to the Mayo Clinic - my doctor thought they would put me in a clinical trial but they did not. Ive gone to the ER for the nerve pain, still didn’t get the treatment. I’ve seen about 8 neurologists at this point in pursuit of one who could figure out how to get it covered - while all of them wanted to help and agreed that I needed it, I have exhausted everything that they suggested.

I have talked to people on the internet with my condition and most of them aren’t able to receive this treatment because insurance doesn’t like to pay for it. I’m in my 20s, I’m not giving up yet.

Edit: Deleted some information that I put on here when I originally posted on r/legaladvice

I’ve seen that it could be, but I’m not sure?

Does medication prevent that or simply treat the symptoms?

Will my episodes get worse with age?

Hi,

So I'm writing a piece of work for medical school and I'd like some insight on the waiting times for individuals who suffer from neurodegenerative disorders (Parkinson's, Huntington's, etc).

Let's say we're in a situation where an individual (adult) starts experiencing symptoms then decides to contact their GP. Approximately how long would it take for them to:-

1. Visit the GP.

2. Be able to visit the neurologist.

I haven't been able to find anything conclusive online so if anyone manages to find sources for the same please mention it in the comments as well.

Attached Link: New treatment options for Brain frontal Lobe diseases based upon rebuilding bodies Immune Trep T Cell immunity. This treatment works on immune enhancement to help the body control damaged tau proteins. Clinical trials are being planned for CBD, PSP Alzheimer and ALS.

https://www.coyatherapeutics.com/articles/20-harnessing-regulatory-t-cell-neuroprotective-activities-for-treatment-of-neurodegenerative-disorders.html

Scientist Sounds Alarm: COVID Vaccines Producing Symptoms of Parkinson’s, Other Neurodegenerative Disorders • Children's Health Defense (childrenshealthdefense.org)

Last night I dreamt that I had a bad neurodegenerative disorder. Last night, I dreamt that I lived for a month with this neurodegenerative disorder as it went from non-existent to ruining my life.

Now, waking up from a dream, I only have bits and pieces but one thing I’m left with is the sheer terror of knowing there’s nothing I can do about it as it ravishes my mind. It started as memory loss, something that’s happened in real life; I forget things like actor's names or shutting down the store I’m working at by the time I hit the freeway to get home. In real life, I’ve been to doctors and they’ve said it’s fine, clearing hard drives to make way for what I’m learning in university.

Then, in the dream, I began getting stinging, day-long migraines a couple of times a week. This was followed by temporary memory loss, maybe lose forty-five minutes a day. Then, the bad stuff hit. On a 2 block walk home from the bar, I’d blackout and wake up further along the path three times a minute; Sometimes I’d wake up having knocked somebody or what they’re carrying over, in the midst of being scolded. In the dream, I was having dinner with friends and asked if I can get a ride home because I’m scared to drive, my best friend responded “oh no, I’m not doing that shit again!” Implying that there was a time before this where I did something seriously wrong. There was also this warmth and euphoria, kind of like when you take THC which, when mixed with the terror in whatever inner dialogue I had, was a freaky combination.

I remember at the end of my dream, I made it to a clinic that deals specifically with this disorder. My abilities of speech were completely gone because I couldn't remember long enough to form a coherent sentence, I barely stuttered out my name for the admitting nurse. They got me in a hospital gown and began studying me, I’d blackout and wake up fifteen times a minute, a lot of time knowing the nurse was there to help but not remembering having ever met him. The last thing I remember was a female nurse and another patient coming to use the room I was being examined in. With the inability to remember anything and the random euphoria that’s a byproduct of this disorder this other patient and I just waved at each other because, what else is there to do?

I woke up shortly after this and immediately tested my memory, started reciting Shakespeare in my empty bedroom to make sure my dream wasn't reality.

From my personal experience, this is the only effective treatment of CFS that I’ve encountered.

Here’s the article: DMT: A biochemical Swiss Army knife in neuroinflammation and protection

DMT is a hallucinogenic compound and a direct agonist of the Sigma-1 receptor, as well as multiple serotonin receptor classes with significant anti-inflammatory and intracellular modulating effects.

As stated in the article,

> Neuroprotection by Sig-1R activation can be attained by preventing elevations of intracellular calcium-mediated cell death signaling (Ruscher and Wieloch, 2015). Based on its central localization and function, pivotal physiological activities of the Sig-1R have been described such as indispensable role in neuronal differentiation, neuronal signaling, cellular survival, [etc.] ... The above outlined picture suggests a direct control of NF-κB transcriptional regulation of chemokines, pro-inflammatory and anti-inflammatory cytokines, which may render DMT as a potentially useful therapeutic tool in a broad range of chronic inflammatory and autoimmune diseases.

I experience quick relief from CFS symptoms within minutes of smoking DMT (as long as it’s not burnt while smoking, because burnt DMT is inflammatory).

Having lived with CFS for more than three years, it’s wonderful to have a more-or-less steady solution for getting my life back, even if I have to smoke the DMT everyday for it to heal my CFS.

earlier post: Microdosing DMT is a functional treatment.

The investigation is far from conclusive due to the passage of time but from what investigators can gather a small but potent quantity of some kind of substance that did not trigger chemical or biological warnings during standard security checks was somehow added to the water of the air conditioning system at the venue where the rally was being held. It is not known who was responsible and nobody has taken credit for it but it is clear that it was targeted using a new and previously unseen method of attack.

https://biotuesdays.com/2021/08/17/lucid-psycheceuticals-focusing-on-total-brain-health/

Just out of interest as I have an essay on this and was wondering where to start...

What underlying mechanisms do chronic neurodegenerative diseases share in common with neuromuscular diseases (in particular multiple sclerosis and Duchenne/Becker muscular dystrophy), and also epilepsy?

I know the genetic hypotheses can be seen as similar, of course Huntington’s is genetic but the arguments for PD and AD maybe being genetic correspond with some of the ideas of muscular dystrophy being caused by mutations.

Are there any similarities between the mechanisms of neurodegeneration with neuromuscular disorders? In particular the stuff to do with protein accumulation and dyshomeostasis?

Same with epilepsy - I’m trying to think how the mechanism are similar in any ways?

My doctor thinks I may be able to get a lawyer involved but I don’t know what that entails or what kind of lawyer I would reach out to.

The treatment is very expensive (intravenous immunoglobulin therapy). It is off-label. My insurance is calling it “experimental.” Since my neurodegenerative disease is so rare, there is no go-to treatment. This is all I have; there is nothing “on-label.”

Is there anything that I can do? I have been fighting them since April of this year and received denial after denial. Meanwhile my disease is getting much worse. Eventually it will affect my organs and become more than just a pain disorder.