u/Vegetable-Band9245 — reddlx

Image 1 — T2-t9 fusion- sjogrens? chyle leak? Lymphoma? Unilateral upper chest stretchmark, waxing and waning facial edema, upper gi distension?

T2-t9 fusion- sjogrens? chyle leak? Lymphoma? Unilateral upper chest stretchmark, waxing and waning facial edema, upper gi distension?

"Ct is normal" can this be because its in lymph pathololgy snd being missed on radiology? My rhuem orderd a neck scan and a lymph node bippsy if any abnormal lymph is seem. But that will take time. Im very unwell. I fear inwont last that long. Er thinks im nutty when i go in there with my hanging lumpy face saying " i dont always look like this and my stomach isnt always this big and tight" All side by sides are within hours apart, no ai no funny angles. I had a very complicated t2-t9 syrgery (12 hours +washou infection). But i also have sjogrens apparently so in concerned for lymphoma as well. More below if interested. Thnx

First, I thought I was having allergic reactions, allergist testing me for mast cell now, but now I see that the fluid is hanging around way too long for it to be allergic reactions as I have stretch marks on the left upper chest (none on right) that are thick and red along with the lumpy face on the left the hanging chin that favors the left. I can grab a real thick piece of hanging skin in the left and close to nothing on thr right when my face is thinner. Numbness what I inhale on the back of my skull numbness on my spine when my surgery was performed. Lymphoma comes to mind cus i wad dx sjogrens and told im at high risk, igg also dropped dramatically within 3 months . In apways hypovolemic and i suspect its worse now as im stuck in bed. I cant see strsight and in not neurologically well. When i fo get up and out as things occasiaknlly clear up ill blakc out repeatedly. Electrolyte abnormalities are common. Protein being high or low is common. Er thinks im a crazy man with a douboe chin as ive been in there 3 times with confusion, lethargy and in abikity to walk. They dont know that im not lying about my dhape changing within hours. They have me marked somehwre as crazy i think. My labs are very derrnaged .high neutrophils, high ebc, high immature granulocytes, hyigh rdw, low sodium, low chloride, high lymph #, plus...low ace, abnomormal csf im a mess...

u/Vegetable-Band9245 — 5 days ago

▲ 6 r/sarcoidosis+2 crossposts

Looks like i weigh 100 pounds more..Angioedema? Mcas? Water retention? Histimine? Vascuclitis?

So this is the same day, hours apart. First photo is upon leaving the er and begging for a shot of steroid. My stomach was in severe pain and thr only thing that fixes that is steroid. I went three months with pretty much eating only 3 to 500 cal a day and soup… Until I started steroids about three weeks ago after my face blew up and I thought I was having an allergic reaction… Well, I might've been having an allergic reaction and I still might be having an allergic reaction. I'm not sure what's going on… Er drs always look at me like im crazy when i say my stomach hurts, pushing against my diaphram and thats why my heart rates 120 blood pressure is 175/110.. they thinj im crazy .im flagged actually. Neuropsychiatric issues, blacking out, dizziness, cant think, things are moving. Yellowstone, pouring out of me, presumably bile… It was swabbed and has normal flora, but is showing as an infection however, they do not want to treat me for it… I'm not sure why, they probably just wanna admit me because it's a normal flora, even though immunodeficient.. Itd actuslly marked on my profile that i took steroids wirhout direction and thats what causes my face to blow up. Its not just "cosmetic" concerns my windpipe has closed on me at leadt 3 times and gotten close to closing about 20. Strudor upon exhaling. . The thinner face is 4 hours after having predilisone iv in er… Huge double chin lumpy face on the side… Go to the ER, of course nobody knows the way I normally look so I get written off as crazy after they read my chart… besides biopsy proven, qsart, ttt, etc, my upper abdomen is severely bloated and it's hard to breathe, i literally have to be pushed in a wheel chair in and out of er. Feels like lung faulure (reduced lung cqpacity has been noted) when I'm upright, im genrally worse… what makes me feel halflway decent and its really making me question is this cancer or a certain hormone being manipulated? Not sleeping. My neurological state clears after being awake 30 hours or so. I can breathe, i can walk. But i will still look "big" sometime throughout the fay, maybe upon esting? Idk. I gavent figured it out and my drs are so confused, some dont even respond. Im so glad i got a high dose of steroid tonight cus this cant be denied know. I think. I took about 40 "before and after" photos.

I'm a bit tired so for now let me just say, I've been diagnosed with neuro sjogrens versus Neuro lupus… Our rheumatologist disagrees and says I do have Sjogren's and I do have MCTD, but not lupus and she disagrees the neuro part. She thinks that's a manifestation for my spine… She thinks I only feel better on steroids because It's helping my spinal information but I think she's wrong because look at the photo… She thinks my face got fat because I was taking steroids for too long even though I weaned off a safe for 4 month. To appease her I even got a adrenal stimulation test and three spot cortisol test… They were all normal. The only one that was .2 points at a range was my stem test and that was 17.8 versus the 18 it is supposed to be but the doctor that administered it said that's no big deal but maybe if you get really sick you might want to consider getting on low-dose steroids Period I'm probably gonna need a new rheumatologist because I think she's obviously wrong… I need advice? I just saw rheumatology and immunology today… Basis flaking off, skin around the eyes a sloughing off,… he put a 24 hour test to test my methylhistamine, but I don't think I could get that testing because I am on steroids… I don't want false testing results… I do have more significant medical history and genetic testing, I'm just really tired right now. If anyone replies to this, I'm gonna go ahead and continue to list my medical diagnosis… thank you so much

While it's on my mind, I would like to add my testing results for today because I'm worried about cancer and I'm worried about central nervous system infections and chronc cns disease as ive been worked ip 4x with abnomrlq csf and they cant get w dx. as my latest CSF pull has shown abnormal CSF, rhis time adding markers like rbc in thr csf (not traumatic tap) and my symptoms worsen with 92% lymphocytes, 75% protein… And severe neurologic issues with blacking out…

Wbc high 16
Neutrophils high
Monocytes high 1.2k
Rdw high -16%
Imm gran- .18k high
Imm gran 1.1k high #
Lymphocytes 4k
Hymatocrit high 46.1

u/Vegetable-Band9245 — 7 days ago

▲ 1 r/smallfiberneuropathy

Very bad neurologic /immunologic symptoms, hyperreflexia, small fiber, taxhycardia,, organ damage, brain damage (and defenration), high B1, high blood dopaminex5)very high folic acid, high magnesium in RBC, high acid from protein (about 8)

Seen the results from my urine and serum organic acid testing had my rheumatologist and myself very confused… Quest couldn't make much of it, they seem like random levels are high… From what I read, all the levels that are higher associated with protein digestion. They're all high. Loose, isoleucine valine… There's about eight levels that are high in about four that are low. Besides this, she randomly checked my B1 and it is through the roof and I hadn't been supplementing… Also, I used to have very normal folic acid and B12 was on the high end, now my B12 is at about 600 and my folic acid is super high at about 2000 or something like that… My brain is so affected I could go days without sleeping and on the flipside. I could also go days without being able to wake up… The other day I woke up and I was aspirating all the fluid for my stomach was in my lungs. I thought I was gonna die… I'm losing consciousness. It's very scary. Neurologist have seen me cardiologist all sorts of specialist even psychiatric have seen me. No one knows what the heck is wrong with me… Recent EEG they had light shining in my face, in my eyes for 10 minutes and they told me, dude you must be very tired. You went unconscious three times within 10 minutes with the bright light shining in your face while I'm talking… I didn't remember it… While I was at church a couple weeks ago, I fell unconscious five times within about 30 minutes.I'm just rambling right now. I'll talk to text because I can't really text and coordinate… Please excuse this, and if you have any thing that I could look into, please help. Thank you.

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u/Vegetable-Band9245 — 11 days ago

▲ 2 r/sarcoidosis+1 crossposts

It's been a six year battle, all my organs have been attacked lungs heart I'm in diastolic failure at 41 bedbound. There's times when I cannot see peoples faces I can't balance can't walk… My eyes burn like fire sometimes I can't lift up my arms or my legs my fingers get stuck in place. Sometimes my fingers will lift up by themselves… The emergency room knows me well and I think the consensus is I'm crazy… Even though I have plenty of diagnoses, there was just so much that was unexplained… Now, if I do have this, it will begin to make sense. I'm in bad shape right now, my diastolic is at 1:25, was diagnosed with diastolic heart failure, diastolic dysfunction. I heard all over no strength to lift up my arm to just reach for my medicine right now too much pain. Does this sound like neurosarcoidosis? My previous neurologist went for a clinical diagnosis of Neuro Sjogren's as my eyes burn like fire zero on the Schremmer's test and rheumatologist says mix connective tissue disease… All over the place, but so far this very high protein, brain damage and high serum ace one seem to show neurosarc is what it is. Also my Igg levels have been dropping like crazy, has me worried… My face has been blowing up. I don't know if that's because of my heart or what because it doesn't seem to be salt related… I wheeze on exhale and they've already said it's not pulmonary. Sometimes it feels like my breathing is gonna totally cease… My breathing, especially during sleeping is very weak, I've had several ER doctors say that I hyperventilate. Any direction help would be utmost appreciated my life singing by a thread right now.

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u/Vegetable-Band9245 — 17 days ago