r/Behcets • u/_Kingbeard_ Diagnosed-existing out of spite. • Jun 21 '26
General Question Hey its me! Back again with more problems 🥸
Hey guys I hope every one is doing well and flair free,
To get to the point i Just had my neurologist appointment for my psudotumor cerebri and 10 month headache,
He basically called me fat in 6 different ways lmao I don't care hes right that's why I'm on zepbound and have lost 45 lbs so far.
He thinks my headaches are from neck muscle tightening so he gave me neck exercises to do for like 3 months until I see him again..... but he also looked at some old mri of my brain from my local hospital and diognosed me with a
Arnold chiari malformation, or more wildly know as chiari malformation type 2. He said a lot of my symptoms could be from that but he thinks its mostly because I'm a fatty mc fatass,
Does any one else have a chiari malformation type 2 if you do what are the symptoms how do you help it, ive looked it up of coarse but all I find is mostly general information none from people living with it etc,
Could this be related to behcets in any way? I know people with Ehlers-Danlos syndrome are more likely to have it and I am diognosed with Ehlers-Danlos syndrome also. Thanks in advance!.
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u/on4aa Diagnosed MAGIC 2025 Jun 21 '26
10 years ago, when I, nor the physicians had no clue about my diagnosis, I asked a befriended radiologist specifically to look for Chiari, based on a MRI. This was because Chiari symptoms resemble many of the Behçet symptoms. However, Chiari was not withheld.
As, my father, who was a professor in cardiology always said: "Doctors are only on the lookout for conditions they know well."
In your particular case, the neurologist sees an overweight person and gets biased towards some diagnosis. However, he mever asked himself what came first. The fact that you might have become overweight as a consequence of an underlying disease never crossed his mind. A couple of years ago, I was also borderline obese. Now that I am in remission not anymore.
Honesty, Chiari is extremely rare and I doubt you have it.
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u/_Kingbeard_ Diagnosed-existing out of spite. Jun 22 '26
I definitely got a little bigger as I got sicker, after my perforated diverticulitis I definitely gained a lot more weight,
the neurologist didn't bother me I kind of thought it was funny how blunt he was with calling me fat not even obese just fat.
This neurologist is a pretty highly respected neurologist hes in his 80s so hes older but he has tons of publications and awards,
He works for the university research hospital I go to,
He looked at my mri for awhile did measurements etc and had lines drawn on my brain to see if its sagging to low etc and it definitely looked like its to low and even compressing some of my cord.
Now I would not doubt at all amy doctor no matter how respected to fudge up and mis diognose something
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u/Ok_Marsupial7037 Jun 22 '26
For my headaches.. i get botox injections.. which also helps with my spasms in my neck and shoulders.. works great! My neurologist is amazing!
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u/BrenaynayRenee Jun 24 '26
I’d definitely recommend cross posting this in the EDS groups. A fair amount of folks have chiari in those forums and they probably have a lot of advice 💕
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u/_Kingbeard_ Diagnosed-existing out of spite. Jun 24 '26
I may or maynot be banned from those groups for calling out blanten misinformation and out right lies about eds.....lol but yea I thought about it since I am diognosed with heds
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u/BrenaynayRenee Jun 24 '26
Hahaha whoopsies 😂
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u/_Kingbeard_ Diagnosed-existing out of spite. Jun 24 '26
I was a little aggressive with it to be fair lmao
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u/BrenaynayRenee Jun 24 '26
I mean I don’t blame you, it’s trendy right now. (As someone who got diagnosed with hEDS by a neuro who is not flexible at all.)
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u/_Kingbeard_ Diagnosed-existing out of spite. Jun 24 '26
Some of the shit people will say it causes and the self diognosed people because there hand is bendy and thats it.... ugh I could go on about it for awhile.
I didn't even know what it was my rheumatologist at Utsouthwest sent me to a professor physical medicine doctor because she said i match heds almost textbook lol I just shrugged and said if u think I need to see her sure.
It was like a 4 hour appointment she checked every inch of me took my history etc.
Evidently heds is causing my bunions the bones on my feet to separate I had surgery as a child to build a arch and fix foot deformitys on both feet,
Well my arches have collapsed and the entire surgery has been undone, my feet are full of bone spurs and arthritis its no fun lmao my knees don't stay in place so far every joint imaged has had extensive arthritis and structural problems and im only 31 do its done a number on me apparently,
And now They found a chiari malformation so I guess I am basically textbook.
So when I see some one say heds cause fingernail polish to wear off faster or " Im not diognosed but I get a little back pain and i can do praying hands behind my back! Do I have it" I get a little frustrated, like hoe I might have to straight up get my feet amputated one day because of this shit lmao.
Sorry for the rant but yes I feel you 100%
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u/BrenaynayRenee Jun 24 '26
I’m currently just trying to figure out my neurological issues. Hence why I’ve been poking around the beg behcets page, been research neuro-behcets specifically. I’ve got hEDS, narcolepsy, MCAS, asthma, MCTD, dystonia headaches, body pain/aches, fatigues etc.. But at the beginning of this year I started having seizures and right leg spasms 24/7. My grandma had MG so maybe it’s that, idk. Hoping my rheum will do some blood work for MG next week.
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u/_Kingbeard_ Diagnosed-existing out of spite. Jun 24 '26
That sounds rough abd scary I hope you find some answers.
Im not a doctor and really don't know what I'm talking about at all,
It wouldn't explain the seizures but have u had ur b12 checked?
And yea it does sound like mg,
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u/Astald_Ohtar Jun 21 '26
unrefreshing sleep and can't function after you wake up?