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Avatar universal

Feel like I’m dying please help

Desperate for an answer, it’s been about 5 years I’ve had symptoms no one can solve. I had surgery a month ago and all was well until this week. My symptoms flared back up and they’re stronger, I feel so sick but everything I’m experiencing isn’t visible. Here is everything I can think of, please if you have any clue anyone out there, please leave a comment! I feel so sick like I might fall asleep and not wake up.

Old symptoms:
Numbness/spaced out feeling
Off-balance feeling

New symptoms:
Body feels like I have a flu without the fever
Burning sensations in head
Watery Fluid going down throat (only present at night when laying down, I’ve woken up choking on it some nights)
Room-spinning dizziness
Temporary paralysis at random times (can’t move or talk - only lasts a second)
Flashbacks to my childhood
Static/ringing in hearing

Symptoms usually start or get worse at night

Family history:
Polyneuropathy
Brain aneurysms
Lupus
Mother had neck surgery for neck arthritis and bone spurs

Abnormal Test:
Reactive syphilis RPR test, FTA-ABS negative
(doctor said it was false positive but if I had it, it’s got to be anywhere from 2-9 years old)

Tests that are normal:
Iron (no longer anemic)
All vitamins/minerals are good
Chest/lungs are good
Heart is good
Head and neck MRI was normal a year ago
All abdominal organs seem normal
5 Responses
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1081992 tn?1389903637
When a person has a varied list of inflammation symptoms, yet standard tests are normal and no doc has come up with a Dx over the course of years, that usually is an immune system dysfunction.

"Body feels like I have a flu without the fever"
That could be the malaise as in MCAS or CFS. MCAS is an emerging disease, but even the American College of Allergy, Asthma and Immunology now recognizes it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6026564/#

"spaced out feeling"
It's called brain fog

"Symptoms usually start or get worse at night"
that's typical of inflammatory conditions

"Mother had neck surgery for neck arthritis and bone spurs"
I'd want her re-evaluated for Ankylosing Spondylitis, now renamed to axial SpondyloArthitis. There is recent thread here to read through. Note that there is even a version of SpA that doesn't involve spine or joints, called 'extra articular' -  esp if you are female (which your profile says).

etc. etc.

All 3 conditions named above, as well as many others, have a lot of overlap.
Helpful - 0
Avatar universal
Food allergies can be suddenly onset and cause a Miriam of multisystem symptoms because of the autoimmune response. When it feels like your whole body is physically and mentally unfunctional, it could be a “non-ige” allergy. There is NO test other than elimination diet for 3 weeks of suspected allergen. The reactions are also delayed and symptoms from one exposure can last weeks. Make a food log, and try 3 weeks of an elimination of the 6 most common allergens. Dairy, soy, eggs, wheat, nuts, seafood. After 3 weeks add one back in at a time to see if symptoms return. Hope this helps!
Helpful - 0
Avatar universal
Have you been tested for Lyme Disease or other Tick-borne diseases? Please note: When someone has Chronic (longterm) Lyme Disease, they will *no longer* have the typical “bullseye rash”. So please don’t discount Lyme just because of the absence of the rash. Is there a “teaching hospital” within driving distance to you (a university hospital)? They usually have the best doctors, accurate diagnoses and best treatment. May God please Bless You.
Helpful - 0
Avatar universal
Also, have you been checked for having a cerebrospinal fluid leak? (“CFS” leak.) It can drain into the nose (and the nose drains into the throat); it can cause tinnitus, imbalance, sometimes positionalheadaches (either from being upright, *or* sometimes  when recumbent (lying down), according to one of the information websites listed below. dizziness/vertigo, brain fog, facial numbness and more. The online “Johns Hopkins Medicine.org” site list different ways it can be diagnosed. “spinalcfsleak.org” explains the symptoms and much more. Please seek the best doctors you can find. God Bless You!
Helpful - 0
Avatar universal
I don't know the answer to your problems but I would definitely have that syphilis test done again, unless your doctor did do a second test which is how they knew it was false positive.

Also, what was the surgery you had?  It is hard to know whether that is related to your current symptoms or not.
Helpful - 0
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