Hearing Loss

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EDS

Hello all. I have had a lifetime of health issues that have always been assumed to be rheumatological but I never fit all tne criteria. This past year, I have had a new "flair up" with very concerning symptoms including sensorineural hearing loss, ruptured ear drum, visual and visual field disturbances, high ocular pressure, new migrane activity, broken wrist and ankle with delayed healing, gastroparesis, internal rectal hemroids, hernia and more. I am currently seeing specialist who agree this is complicated. Looking into EDS was recommended to me, and I was absolutely shocked to see that almost WORD for WORD and symptom by symptom, I literally fit almost all the 13 subtype. I'm so scared and I'm so confused! How can I fit all of to that large of a degree. I have a wrist surgery in 2 days for a fracture that happened in January and I'm absolutely scared to go under anesthesia now or be cut on after ready the cardio and vascular forms, which again I fit criteria heavily. I have no had an echo but my heart rate and BP are having difficulty being controlled on beta blocker. Can anyone give adive or experience with the possibility of having multiple subtype and if I am putting myself at risk having this surgery. I literally don't even know where to go from here.

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FND Service Dog

I have Functional Nuerological Disorder which causes non-epileptic seizures, paralysis episodes, blackouts, walking weakness/instability, muscle spasms, vision impairments, hearing loss, tics, and more.
Would you recommend a service dog?
Already have 55 lb St. Berdoodle (female) with much potential. She is well trained and alerts to my symptoms and seizures, as well as responding through DPT.

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FND Service Dog

I have Functional Nuerological Disorder which causes non-epileptic seizures, paralysis episodes, blackouts, walking weakness/instability, muscle spasms, vision impairments, hearing loss, tics, and more.

Would you recommend a service dog?

Already have 55 lb St. Berdoodle (female) with much potential. She is well trained and alerts to my symptoms and seizures, as well as responding through DPT.

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Adult Diagnosis with other things...

Hello. This is the first time I've posted about myself. I was diagnosed with ADHD-Combine two years ago along with social anxiety disorder, avoidant personality disorder, PTSD, and OCPD. I also forgot hearing loss and I have bilateral hearing aids. I am struggling to keep a routine for myself. I make one and it works for a couple days. I never write them down etc. I have found that checking things off works for me. Can someone tell me what is a good digital to do list or tool that I can use in my day to day?

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Dizzy from doctors 🥼

Hey. I’ll try to keep this short as it’s way too much if I go into details.
2 years ago began the start of the newest problems.
August 2024, they increased and got worst at a way faster rate.

Diagnosis:
Vitiligo
Recurrent staph/MRSA/cellulitis
Folliculitis/Eczema/Prurigo Nodularis
Anemia (most of my life)
Thickened endometrium
Hormone imbalances
Migraines
Spinal injuries
Mental health (ptsd/severe anxiety/depression)
Chronic swollen throat/tonsils/lymph nodes
Sinusitis
Chronic dry cough
Low BP
Recent deviated septum
Fatigue, malaise
Body aches/weakness
Carpal tunnel
Skin intolerance to hot/cold
Recurrent UTI’s
Fibromyalgia
Recurrent ear infections / ear staph
Eustachian tube dysfunction
Hearing loss
Uterine fibroids & cysts
Memory loss
ADHD
Severe Insomnia with nightmares
IBS/GERD
TMJ/Bruxism

Not yet diagnosed:
Raynauds (2 almost constantly blue toe nails, recently started in second, 1st has been present last two years off and on)
Chronic chills
Brittle nails
Hair loss (possibly medication related)

Recent testing:
A few genetic tests
Allergy testing
Several autoimmune panels

Current additional issues:
Oral thrush (due to long term antibiotic usage - close to four months now)
Ear pressure/fullness along with dark red/purple spot inside filled with liquid ? Also spots of white appearing pus that pop to drain
— can’t handle loud noise or cold air currently. Severe ear itching.
Eye itch and redness (not pink eye)
Muscle weakness and twitching - minimal long-term control in arm muscles

Pending:
Additional testing
Meeting hematology
CT of neck/throat/nose
Hysterectomy (paused until healthy)

Immediate Family history of:
Lupus (blood work shows low middle numbers not high enough to diagnose)
Celiac (ruled out by endo/colonoscopy)
Psoriasis
RA (ruled out by blood work)
Heart issues

All I can say is yes, I’m in pain. And yes, I’m exhausted. And frustrated. I’m not a crier and all I do is start crying all the time. I have 4 kids and I can’t be the best for them. I am failing everywhere in life and I just need to get this fixed or someone to finally step in and help because I can’t keep declining like this.

I am a veteran. I have little say in my health care. I can’t get a second opinion. Getting a rheumatologist seems to be impossible despite numerous doctors telling me I should see rheumatology. I’m feeling so defeated. If I could at least narrow things down it would help so much, so I could share my research with my doctors. I have several things on my list but I need to get a really good list. Please help if you can think of what may be causing all of this.

Thank you.

*** I would share many more pictures if I could 💕

#chronichealth #Pain #hurting #mother #Veteran #Desperate #pleaselisten #sick #someonegetmedrhouse #illeventakethegoofysidekickguy #ijustwanttofeelbetter #helpme #Genetics #hematology #labs #Skin #Dermatology #IBS #GERD #autoimmune #Disorder #PTSD #Fibro #Rheumatology

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I’m new here!

Hi, my name is SomeLady. I'm here because I have a few chronic illnesses and I'm looking for encouragement and support.
#MightyTogether #KidneyDisease #UlcerativeColitis #HearingLoss

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I'm new here!

Hi, my name is 3856. I'm here because I want to communicate more effectively with my spouse who has hearing loss. I also want to improve my skills coping with a chronic back pain problem.

#MightyTogether

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