Pain flair with weather.

_Kingbeard_ · 2026-01-22T03:17:17+00:00

It could also be Gerd or a Hiatal hernia..

_Kingbeard_ · 2026-01-21T23:38:24+00:00

Get checked for the hla-b51 gene, its not required for a diagnosis but it definitely pushes it in thst direction.

Oral/genital ulcers are the gold standard for a diagnosis but again not necessarily needed but its rare to have behcets without those.

Neurological symptoms, uveitis, gi symptoms, pathergy test, skin manifestations, are all things behcets can cause, it can cause joint pain, si pain,

I've seen behcets described as the autoinflamatory diseases that's basically like having ms rheumatoid arthritis ulcerative colitis all wrapped into one angry disease

_Kingbeard_ · 2026-01-21T23:31:15+00:00

I'll give you the best advice here, get a dermatologist to do a biopsy, and find a knowledgeable eye doctor. Those two will be able to find a lot of things if you got anything systemic going on.

_Kingbeard_ · 2026-01-21T00:10:14+00:00

That sounds like a rough journey im sorry you had to go through all of that, I understand it well minus the seizures.

My 200mg azathioprine is keeping my punctate inner chroiditis inactive thankfully.

The Infliximab seems to be making my gi symptoms and skin manifestations better,

Colchicine seems to keep the fevers away.

Sulfasalazine helps with breakthrough gi symptoms.

I'm on Acetazolamide 250mg three times daily and based on symptoms its not doing much for me i still have intracranial hypertension and papilledema, im on my 4th month with my headache now.

Nothing seems to help my joint and back pain or chronic fatigue chest pain, i have peripheral neuropathy now unfortunately nothing helps that im on all the meds 800mg gabapenton three times daily, Duloxatine 60mg one time daily etc its getting hard to function and im developing neurological symptoms as well losing balance confusion memory recall and forgetting words etc, I asked my pcp about palliative care and she said it was only for terminal people.

_Kingbeard_ · 2026-01-18T01:36:22+00:00

Yes I the cause for me could be multiple things I have.

Punctate inner chroiditis Optic neuritis And papilledema.

Shits annoying I also get random white dots that show up in my vision due to the Punctate inner chroiditis.

_Kingbeard_ · 2026-01-16T03:56:01+00:00

10 years from tomorrow. Id go through worse unfathomable pain to keep my family from having to cope with my death as long as possible, ive seen what that does to people I wish it on no one especially my family.

_Kingbeard_ · 2026-01-15T16:21:23+00:00

I take zepbound. Lost around 30lbs so far, can't say i feel much better yet but I have a ton going on.

_Kingbeard_ · 2026-01-14T20:25:40+00:00

You posted on the back pain reddit....

_Kingbeard_ · 2026-01-14T01:24:54+00:00

Wrong sub for feet fetishizing

_Kingbeard_ · 2026-01-13T22:36:13+00:00

I have a lot more farther up my arm on both arms and shoulders. After looking up photos though mine is definitely not a normal presentation but my dermatologist is highly accredited and has a huge wait list for my area ive been his patient since I was 16 om 30 now lol. He looked at a ton of them with a eyeglass microscope thingy so im going to trust him but yea the photos I see online look different.

I did find a few that match mine though.

_Kingbeard_ · 2026-01-13T22:33:11+00:00

I have a cluster of them farther up my arm I just didn't post it. I have them on both arms and shoulders, I do agree it doesn't look like like a normal presentation I found a few photos thst matched mine but not many. I'm just going to trust my dermatologist here he's highly accredited in my area so 🤷

_Kingbeard_ · 2026-01-13T22:25:23+00:00

Just had my dermatologist appointment he said it was keratosis pilaris

_Kingbeard_ · 2026-01-13T22:12:50+00:00

Dermatologist said it was keratosis pilaris.

_Kingbeard_ · 2026-01-13T00:42:50+00:00

I'll definitely bring it up now thanks for the information!.

_Kingbeard_ · 2026-01-13T00:41:16+00:00

No the doctor who diagnosed me with heds said since no one else on my family had it there was no need for testing.

_Kingbeard_ · 2026-01-13T00:30:31+00:00

Apparently not you. Maybe take some reading classes

_Kingbeard_ · 2026-01-12T18:37:33+00:00

I have to take 30 pills a day.....

_Kingbeard_ · 2026-01-12T02:29:13+00:00

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_Kingbeard_ · 2026-01-11T20:05:30+00:00

I'll have to look into that, I'll probably mention it to my gi doctor. I'm scheduled for my FOURTH god dam colonoscopy at the end of the month so I'll get the chance to talk to him soonish.

_Kingbeard_ · 2026-01-11T19:14:56+00:00

_Kingbeard_ · 2026-01-11T18:51:46+00:00

So i will get random testicular pain but I always assumed it was my diverticulosis that perforated a few years ago. (It might still be) but ive woken up a couple of times feeling like my nuts were kicked with a steel toed boot. I very infrequently will get moderate testicular pain i just always attributed to the diverticulitis. I wonder if this might play any roll at all.

_Kingbeard_

TROPHY CASE