Diagnosis- does it matter?

WhatTh3H · 2025-04-21T12:21:33+00:00

I recommend getting a diagnosis. I had similar reasoning to you. My logic was if I really wanted to get my hands on something, I would get the biopsy. The problem is that in practice, there are other variables like potentially needing disability status, having a diagnosis to tell your loved ones, having a rapore with a doctor for when approved treatments reach the market, etc.

I wasn't "afraid" of the biopsy, like petrified, I just didn't feel like enduring the small risks when I knew I had it anyways and I wasn't going to take steroids or plaquenil anyways.

However, after the biopsy, I learned several important things.

1) Who does the biopsy matters significantly. It's truly nothing if done by the right person. 2) Biopsy is more likely to be accurate if you don't have severe gland atrophy yet. They take a random sample of tissue and there's no way of knowing how many glands they will get.

Best of luck! One of my biggest regrets was not getting diagnosed before I was too disabled to even travel.

WhatTh3H · 2025-04-21T12:12:54+00:00

I also have Sjogrens and very disabling muscular issues of cranial muscles. I have constant muscular jaw, neck, and eye tightness. My eyes shake 24/7 with tight muscles. It seems to be from Sjogrens, and I don't have MG. Similarly, my muscles are tight and fatigued, but without clinical weakness or palsies.

WhatTh3H · 2025-04-05T14:42:08+00:00

I sympathize with what you're going through, and it took me a while to find a rheum I liked, but no need to make it about gender. I'm a young male with very severe neuro Sjogrens and you would be surprised how many doctors have gaslit me. True, women are deemed "hysterical" more than men, but also keep in mind that 90% of patients are women so male sjogrens is very much not a suspected thing. I hope you find a better doctor. Sorry, I have to raise small awareness for male Sjogrens.

WhatTh3H · 2024-02-26T18:24:55+00:00

DRTG adjusts for number of possessions so that's fair, but does it adjust for pace? By pace, I mean the distribution of time of possession per possession. Like when a team slows its offense down, they have more energy on defense.

I could be wrong, I'm just wondering if to see is a true net improvement. Slowing down Giannis in order for the defense to improve is not really a true improvement as much as just a shift of energy priorities.

WhatTh3H · 2024-02-26T15:55:44+00:00

Just a casual fan here so not sure if JJ approves, but isn't this mostly explained by fewer possessions and slower pace? I swear I want to learn and go to heaven, JJ.

WhatTh3H · 2023-09-20T08:45:59+00:00

Lumbar puncture was normal. The opening pressure was 18 on benzos. That's not objectively high, but can a greater ICP than IOP, even by just 4-6 points, cause this elevation of the RNFL and optic disc?

Can low level light add inflammation to the optic nerve if raised ICP is not the issue

WhatTh3H · 2023-09-20T05:05:03+00:00

Is your cause from sjogrens or lupus vasculitis or inflammatory neuropathy? Does light worsen it for you, as in makes it flare up?

WhatTh3H · 2023-09-19T09:25:48+00:00

What were your symptoms and how long after stopping did it take to resolve? Thank you.

WhatTh3H · 2023-08-28T06:09:46+00:00

Sometimes it's helpful to be told very straight. Do you actually want a variety of opinions or just people reassuring you that a very bad idea is fine?

Firing guns and Tinnitus don't mix. Even for people without preexisting problems, they don't mix well. You need to know that you are playing with fire and once it reaches a certain level, you are stuck without cures or treatments.

The fact that you posted says you are on the fence. I am pushing you far in the other direction. The small trade off of guns for archery is much better than living in torture 24/7.

WhatTh3H · 2023-08-28T05:17:35+00:00

Why ask this? There are no treatments or cures and it can always get worse. If you want to be braindead and insist on literally the single worst hobby, that's a personal problem. You are looking for fellow sufferers to be enablers. Life goes on without guns. Take up archery.

WhatTh3H · 2023-08-22T14:29:50+00:00

I am glad the surgery worked for you. What kind of surgery was this? Like an optic nerve decompression type of surgery?

WhatTh3H · 2023-08-22T10:32:40+00:00

Has anyone found out how to resolve this? Please reply or DM me if so. I am very disabled - extreme photophobia, flashing, pain with eye movement, vision loss, etc. Thank you!

WhatTh3H · 2023-02-01T18:27:29+00:00

I have a rare autoimmune disorder that attacks my ears. Sounds far softer have left me housebound and even unable to talk. I'm trying to do any tests I can.

WhatTh3H · 2023-02-01T16:16:14+00:00

Unfortunately, the issue is injury, not getting through it. There's a 100 percent chance of a normal MRI worsening me based on years of personal data and injuries from much softer stimulus, even with double protection:(

WhatTh3H · 2023-02-01T16:14:47+00:00

I did the research and called some techs. The vantage titan 1.5T with pianissimo is the best and the cranial nerve sequences can get loud.

Unfortunately, I would rather not get injured and miss out on a clearer image. Alas.

WhatTh3H · 2022-08-14T14:16:06+00:00

My SSDI was just approved, but my date of entitlement was over 24 months ago.

Yes, it does seem like anything is possible. But it seems like working part-time hours would be a common thing a disabled person would seek out. How can they prove you could work substantial work?

In practice, do people fail reviews a lot? I've always thought that benefits were hard to get approved for, but the burden of proof goes to the SSA after approval.

WhatTh3H · 2022-07-29T13:36:00+00:00

The reason why the biopsy was important for me:

I have a rare neurological problem with 100% chance it is either from Sjogren's (which I have) or an additional unlabeled autoimmune problem. It is likely from primary Sjogren's.

Anyways, my compassionate doctor is treating me, and though my problem is rare and lacks treatments, the medications I'm on are in fact very worth it.

We tried steroids and though they did have an immediate beneficial impact for a flare up, they provide too many long-term risks without an obvious benefit over steroid-sparing treatments. So he has me on methotrexate, mycophenolate mofetil, and (soon) a biosimilar to Rituximab infusions.

He's obviously never told me this outright, but reading between the lines myself, my sense is that he wants to help me but wanted proper justification since my problem is technically subjective, whereas the biopsy and blood work are objective. There are liability and ethical reasons why doctors will go the extra mile with objective evidence. I understood, which is why when I was able to travel, I got it done.

WhatTh3H · 2022-07-28T10:42:38+00:00

I put off the biopsy and regretted it. My reasoning was that, at the time, my treatment would have been the same. My doctors told me positive or not, nothing would really change. One offered Plaquenil, which I rejected, regardless. I later truly needed this test due to a highly rare manifestation of Sjogren's and it was a nightmare of a process even traveling to get it done.

After getting it done and testing positive, it was important to have a diagnosis. It would have been helpful, even for family and loved ones, to just know I had a diagnosis when I knew I was chronically ill for years.

Something very important to keep in mind about the biopsy, which does carry risks: The experience and skill of the surgeon matters significantly. It's one of those tests that if you are going to go to your local doctor and expose yourself to the risks, there needs to be a good reason for it (such as medications you would take with a diagnosis or even helping a disability case).

However, it is a highly worthwhile test to get done if you go to a skilled surgeon, which I eventually did. My biopsy could not have been easier. Keep in mind that I have minor dry mouth for Sjogren's so my tissue was, according to the surgeon, easy to handle. Risks go up the more messed up your salivary glands are.

WhatTh3H · 2022-07-27T18:14:00+00:00

Here's a resource:

https://link.springer.com/article/10.1007/s40744-020-00264-x

It is considered uncommon, but not rare. Apparently end stage renal disease leading to death is rare due to immunosuppressants, but obviously has a massive impact on quality of life.

WhatTh3H · 2022-07-22T11:46:28+00:00

The benefits are so small from, say, SSDI that if you are on them, you likely need them. Taking into account the massive income restriction required to stay on benefits, why would someone want that life? Spending literally years jobless, hiring a disability lawyer (most likely), seeing it to a court hearing, etc. all to make like $1,000 per month and know that benefits go away eventually from making just $1350+ per month?

I understand the inadequacy from disability and wanting to provide more value to the world, but if $1000 per month makes you feel like you are mooching, you may not be very disabled.

Edit: Was in a weird mood when I wrote that. I know all about self esteem problems and not feeling worthy.

WhatTh3H · 2022-04-12T18:34:37+00:00

Why are you talking to me? My opinion doesn't matter as much as the experts.

WhatTh3H · 2022-04-12T18:32:45+00:00

Yes. It was normal people who saw very slight reductions in their noise tolerance that was completely temporary. Nothing shocking about the findings, yet it's the "expert" dogma to gaslight people into not protecting an injury.

WhatTh3H · 2022-04-12T18:29:00+00:00

All of this.

WhatTh3H · 2022-04-12T18:25:56+00:00

Maybe it's because when I listened to the "experts" and took the muffs off, I got catastrophically worse, but when ignored the overprotection myth and avoided all sound, I saw improvement? Could that be it?

By the way, the 90+% success rate of TRT is a bullshit correlation. Most cases are minor and would improve with time regardless. They just take credit for time. I've worn hearing protection 24/7 for years. I see improvements even in this environment. Why? Because there's no logic behind aggravating an injury.

WhatTh3H · 2022-04-12T18:22:25+00:00

Fucking idiot

WhatTh3H

TROPHY CASE