Avatar universal

Fading away and no one knows why HELP!

I am a 30 yr old F, who has Ehlers Danlos Syndrome. Although this causes many problems, my drs are positive i also have developed another disease, which is progressing rapidly.  Since last year of may 2015 here is whats been happening, all which is new onset.
-Started unintentionaly losing weight rapidly, i was a size 16 now currently may 2016 size 6 :( even though i eat everything pizza, cake ect.
-extreme weakness/fatigue worse than anything ive ever had, breathlessness, even just from talking.
-also sudden hemoraghing and periods lasting months at a time.
-getting constant infection after infection, chest, kidney,throat, sinus repeat

-slight anemia, lymphocytes slightly low, only one time low neutrophils. Negative ANA ESR CRP

January 2016- i bacame so weak,so fatigued,passing out, and new onset of absense seizures.
-all my specialists are so concerned by my drastic weight loss, and that i look so frail, pale and weak.
-started getting severe pains in back of head (mris were fine)
-fast forward to April this year, i am now so weak and breathless i cannot even do dishes, or get groceries. Have now developed some type of blockage in throat/esophagus.
-swollen tonsil on right side(no infection) for 6 weeks now
-my dr found my lymph nodes were swollen, some hard, non movable. And one that moves.
-as i am now unable to eat due to a mysterious throat blockage, and feeling so full with pain after 2 bites, have lost another 10pnds in April
-ultrasound of thyroid showed 2 nodules "4mm predominently hypoechoic mixed solid nodule" and "6mm solid iso echoic nodule".   The ultrasound tech was rude and wouldnt scan any of my lymph nodes, stating "its probly bones". And then they wrote no worrisome cervical lympadenopathy.

-waiting months for endoscopy still, meanwhile i am so ill now i cannot go out, barely shower, and even talking makes me out of breath. I am slowly fading away. Any opinions or help is so very much appreciated.

Thank you everyone for listening
3 Responses
Avatar universal
Sorry also night sweating, enough that my boyfriend puts ice packs all over me cause im soaking sweat( not sure if this is night sweats, since about 6 mnths ago)
1081992 tn?1389903637
Hi, Elizabeth. I'm sorry to hear you've been having such an awful time. Not many people have things so bad and so varied. But I don't think there's reason to jump to thinking about lymphoma. There is reason (food getting stuck) to jump to thinking about Eosinophilic Esophagitis (EoE) and related conditions. Hasn't any doc mentioned that? There is a known association between CTDs and Eosinophilic disorders, btw.

Since you seem very sharp and already knowledgeable, I'm going to post below the rough notes I typed while reading your post. I quote you on a line, then add something beneath each quote. It should take a while for you to get through, with looking up terms and coalescing everything in your mind. I'll be happy to try and answer any followup questions. You are probably best off by eventually becoming expert in your own condition.

Quick summary: if you have EoE then the probable solution is to eliminate trigger foods. That can be very tricky. Typical skin allergy tests might be useless. The immune system can be very mysterious. EoE would be like the tip of the iceberg for you, with all your symptoms tied to eosinophils and mast cells, on top of your EDS.

unintentionaly losing weight rapidly
reduced calories, right? i.e., not cachexia which is wasting despite sufficient nutrition

extreme weakness/fatigue worse than anything ive ever had
do you have poisoned feeling?

breathlessness, even just from talking.
possibly mast cells in lungs, leaky lungs, fluid blocks air. which lung meds tried so far?
Mast cells cause leaky tubes (blood and air) and also bronchoconstriction

also sudden hemoraghing and periods lasting months at a time.
normal CBC, so possibly due to MC's heparin - maybe aggravated with CTD arteries

getting constant infection after infection, chest, kidney,throat, sinus repeat
maybe airway immune reaction, not infection (e.g., as in flu) - but why kidney?? bladder not involved? any cultures done?

only one time low neutrophils
absolute or relative? maybe virus

there are many other tests, like IL6 - so inflammation not ruled out

passing out
after standing? tilt table done? look up poor man tilt table with BP. Orthostatic intolerance

why? low circulatory volume, blood withdrawn from skin?

blockage in throat/esophagus.
bingo --->>>>EoE? or swollen nodes?
watch Greenhawt video eventually

lymph nodes were swollen, some hard, non movable
where? size? sonogram done?

as i am now unable to eat due to a mysterious throat blockage
look up DDx for EoE, e.g. achalasia
be aware of most common cause of EoE: FOOD SENSITIVITY

and feeling so full with pain after 2 bites
pain before swallowing? pain where, esophagus?

soaking sweat
yes, that qualifies. can be immune system caused, not necessarily lymphoma


eventually watch youtube Doctor Diana for comorbidities

be aware: eosinophils are very destructive (remodeling), but probably directed by MCs

first priority to get healthy: can you do liquid nutrition, but avoiding sensitivities (top 5 types, then expand to rarer ones like oxylates); be aware of elemental nutrition and feeding tubes

lymphoma is not a top concern depending on node sizes, fierce inflammation can harden and matte nodes, though rarely

gallbladder problems? any bad reaction to eating fat?

any surgery done that kicked off problems?

no brain fog??

corticosteroids tried? what results?

eventual endoscopy should include snipping biopsy samples for Eos counting

can you draw a line on sternum with fingernail?
1081992 tn?1389903637
Hi again, Elizabeth. Have you read through that? The key seems ot be the food getting stuck, which is likely due to Eosinophilic Esophagitis, which is the key to unlocking the mystery.

Before having the biopsy, you can begin experimenting with food elimination.

Are you there?
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