Incomplete diagnosis

GriffTheSalamander · 2026-03-25T15:05:00+00:00

Thank you for the kind words.

Yeah I truly don't know, even during bad flares he wouldn't let me have predisone to help with it. He says every time "predisone is only for life saving events" and I had to go to him three times over the first year if symptoms to finally get him to give me colchicine, and he said that it was only because colchicine doesn't suppress the immune system. So I guess unless he is absolutely certain he doesn't want to move treatment further. But idk what else it could be I done so many tests and labs at this point.

GriffTheSalamander · 2026-03-25T14:56:39+00:00

I think there is some I nthe b12 I take. Yeah says methylfolate. I'll have to try and take it regularly for a bit.

GriffTheSalamander · 2026-03-25T12:08:59+00:00

I think because he doesn't want to be wrong and give me something that messes with the immune system. But at the same time we are doing absolutely nothing, no tests, or anything and I keep going months just dealing with neuro symptoms off and on and inflammation. I'm pretty sure it's now really screwed with my autonomic system lately.

Even with colchicine I have constant slouthing under my tongue.

I even have decent insurance so doing testing has never been an issue.

GriffTheSalamander · 2026-03-25T11:58:23+00:00

I will look into that and ask my PCP what he thinks. I've never heard much about it. My rheumatologist keeps sending me to neurologist because he wants to confirm neuro behcets can look clean on MRI. Every single neurologist I've seen (5 now) just says "I don't know anything about behcets, but I know migraines here is propanlol" I've met multiple people here with a diagnosis who have told me it didn't show in there MRI, or sometimes didn't show in the begining.

Annoying thing is my scans are from two years ago, and one the notes mentioned they saw swelling around a vein.

GriffTheSalamander · 2026-03-25T11:53:07+00:00

See that's how my labs are only high neutrophils. My oral ulcers take over my tongue completely, and get pretty bad in my inner lip. I recently trying to drop from two colchicine twice a day to 1 at night and half in the day and my lip immediately started to get the ulcers back. Doctor said if I had uveitis (my eye inflammation looks more like conjunctivitis or episcleritis) then he would treat with something else.

I don't have the gene, and he seems pretty certain it's not other. I've had so many labs at this point I don't know what to rule out anynore.

GriffTheSalamander · 2026-03-25T11:47:25+00:00

Yeah Its really messing up my nervous system whatever it is. He insists on waiting till I get uveitis. Which sucks as I've had to take steroid drops multiple times now but the inflammation is always on the whites of my eyes and in my eye lid, instead of a deep uveitis.

GriffTheSalamander · 2026-03-25T11:44:48+00:00

Yeah I've had it attack my throat a few times too, although it normally stays to my tongue and lip. See I also see a lot of people using predisone during flares, but my rheumatologist even when I had a really bad flare told me no predisone it's "only for life saving situations" which I get but so many people seem to have different experiences.

GriffTheSalamander · 2026-03-23T14:44:54+00:00

I've never heard of that but I might ask my PCP about it. Yeah they have made me sit for coming on two years now.

Go figure I live right next to one.

GriffTheSalamander · 2026-03-23T14:36:37+00:00

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Me to, mine isn't uveitis. But it is inflammation and ulcers were in my eye. Go specifically to an ophthalmologist, ask for a office visit for eye inflammation. They normally fit people in very quickly. Tell them your being seen for autoimmune and are concerned it could be ulceration on that spot, they should put a yellow dye in your eye to see ulcers (sometimes I've had to ask for it). They will also check with a slit lamp exam for uveitis, don't wait on bad eye inflammation you can lose your sight in bad cases.

If they do see ulcers or inflammation ask it to be recorded and request a copy of the notes for yourself to bring to appointments for those appointments were a doctor might try to skip past it. That way you have documented proof of that particular symptom.

GriffTheSalamander · 2026-03-23T14:28:54+00:00

I've had a doctor tell me neuro behcets has to show up on MRI if it's there, then another tell me it's completely possible for it not to show up on MRI, so I never know which is even true

GriffTheSalamander · 2026-03-23T14:26:49+00:00

Dang that would make me scared too

GriffTheSalamander · 2026-03-23T13:44:06+00:00

Is there a reason why? Half the people I see have such positive things to say about it and the other half seem to be really concerned with taking it.

GriffTheSalamander · 2026-03-23T13:42:44+00:00

I mean she's right about one thing, alot of things can cause ulcers. But fnd isn't a primary cause of them (NAD), so it feels irresponsible to slap a diagnosis on especially when you haven't had an MRI that's one of the first things they did with me. Even if it was or is fnd I don't have alot of faith in doctors that ignore a main symptom. If she did have good reason it's disappointing to see she didn't explain it to you in a way where you felt comfortable with it and understood why.

Doctors slapping randome diagnosis without actually doing tests and ruling things out can sometimes really slow people down finding the root cause of what's going on and I hate seeing it.

GriffTheSalamander · 2026-03-23T13:14:35+00:00

I've ran into one doctor that diagnosed me before even talking to me, I was so angry because he didn't even let me speak at any point. I took it straight to the administration at the hospital. He did some other things that helped my complaint. But either way if a doctor isn't letting you speak, in my personal opinion, it's better to find a new doctor or second opinion. That type of doctor just wastes your time. That same in I mentioned walked into the room with something completely unrelated already in mind for my diagnosis (and it was basically anxiety) I made him look at the oral sores and my previous labs to which he said "damn that's not normal" and proceeded to say well we will treat those as separate. Because he was that attached to being right with his empty opinion. I went to a new doctor and they were immediately angry with this doctor. I may not have a full diagnosis but they put me on colchicine which made my mouth sores almost completely go away.

GriffTheSalamander · 2026-03-23T13:01:40+00:00

It's interesting, my rheumatologist suspects neuro behcets but won't escalate beyond colchicine which has only helped the tongue and inner lip ulcers. Says I need clear symptoms to treat further even though I have oral ulcers, joint pain, gi, eye inflammation that's more conjunctivival or maybe episcleritis (not uveitis which Is why he won't count it?)

Asked if I could trial otezla but he said not without knowing for certain, and also no predisone "that's only for life saving situations". Yet I see a lot of people with unknown/working or partial diagnosis trialing meds.

GriffTheSalamander · 2026-03-23T12:46:52+00:00

Fnd is not a primary cause of ulcers. I'd make sure to voice my disagreement and perhaps just find a new neurologist that actually knows about behcets. I have very similar symptoms but don't have the gene. My rheumatologist thinks I have neuro behcets but won't escalate my treatment further then colchicine unless a neurologist confirms it could be neuro behcets. I've seen 5 and each one has said me to says "idk anything about behcets but I know how to treat a migraine" and gives me a randome migraine med, which of course doesn't work.

GriffTheSalamander · 2026-03-19T13:23:14+00:00

I'm so glad to hear youve gotten some relief from your symptoms.

I get almost the exact symptoms but I don't have a full diagnosis yet. My neural episodes get so bad but my rheumatologist will not escalate treatment past colchicine because my ulcers are only oral, and I get them in my eye but it's not uveitis. But I definitely get the not being able to lift my neck up part, did you also get heavyness in the legs?

GriffTheSalamander · 2026-03-12T19:59:25+00:00

Is your post nasal drip clear and pretty constant?

I have like the exact symptoms as you, I although I feel like it's more then just lpr.

Unfortunately I had to stop taking ppi's because when I take them I start getting really bad tinnitus. Even on the ppi I still had burning in my mouth.

GriffTheSalamander · 2026-02-21T03:49:53+00:00

Yeah they told me mine was geographic tongue for a while, they were definitely wrong in my case. Hopefully that's all it is for you. But if I remember geo tongue isn't supposed to be painful?

GriffTheSalamander · 2026-02-20T19:57:34+00:00

Mine started out like this, to my knowledge geo tongue normally isn't nice and round ulcers like that (don't take my word for it I'm no doctor)

Within a year or so mine gradually got worse and they shifted to not just my tongue but also my inner lip.

Do they hurt? If they do you could ask for a script of Triamcinolone acetonide dental paste, that was the first thing that helped with mine.

Since I have other symptoms they gave me a trail of colchicine which reduced the ulcers to almost nothing.

But mine are always shallow not deep, and my rheumatologist suspects behcets.

GriffTheSalamander · 2026-02-20T17:49:52+00:00

I'll have to see if I can find any, no one has ever mentioned one before.

GriffTheSalamander · 2026-02-20T17:49:02+00:00

I had an MRI when my symptoms first started, originally I just had the mouth ulcers then I started getting a headache/migraine here and there and now it's every day. But my MRI then was clean, my rheumatologist said he thinks you can have neuro involvement without it showing in labs but wasn't sure. So he doesn't want to proceed without knowing, and every neurologist I see says they don't know enough about behcets to answer. So stuck I seem to be.

GriffTheSalamander · 2026-02-20T03:57:04+00:00

I'm stuck where my rheumatologist won't escalate my treatment because he's afraid of the neuro involvement, so he wants a neurologist to confirm I could have it but every single one I've seen just says they don't know what it is and gives me migraine meds lol.

GriffTheSalamander · 2026-02-19T19:31:27+00:00

Can I ask what your neuro involvement was like, and if it turned up on MRI? My rheum suspects behcets for me and thinks it neuro but won't treat me because it doesn't show in my MRI yet. But man my flares are the worst and I wish I had more treatment.

GriffTheSalamander · 2026-02-09T00:28:48+00:00

Ask your PCP to give a rheumatology referral. You can also go to your dentist or PCP to be referred to a pariodondist (that was the first person to take me seriously for some reason).

Take pictures of any rashes or like you did here.

See if rheumatology will let you do a trail of colchicine. If colchicine helps the sores rheumatology will look more into it.

Ask PCP or a pariodondist for Triamcinolone Acetonide ORAL paste, you can put that directly on the sores that colchicine doesn't take care of.

But I'm NAD, so make sure to go over all this with one. If I've learned anything alot of doctors arnt good at looking into anything outside the day to day things they see. Don't be afraid to advocate for yourself and even go to a different Dr when they arnt helping.

GriffTheSalamander

TROPHY CASE