Dysphagia

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The decline of my health from 2022-2023 thru my doctors notes. Doctors ruling me off as "rumination", losing hope with doctors listening.

June 6, 2022. 18yo patient lost a total of 26 lb. Vommiting progressed to 6-7 times per day. She eventually underwent an endoscopy and was told she had reflux and eosinophilic esophagitis. She continues to have vomiting on a fairly regular basis. She also has heartburn. She is constipated. I get a hint of rumination.

August 16,2022. She had several other complaints today. She does feel bloating at times. She has also developed constipation. She has a good bit of difficulty having a bowel movement unless she takes a laxative. She does eosinophilic esophagitis although I am not sure it is producing a lot of symptoms. I still wonder if there might be a degree of rumination here. Constipation predominant IBS: I think she has this. I think she would do well with Linzess so will give that a try.

August 2022 Endoscopy showed (pay attention to this one). Upper endoscopy showed normal esophageal motility. Barium swallow showed some reflux but no stenosis.

June 15,2023. 19 y.o. female who presents to the GI Clinic today for a follow-up appointment regarding dysphagia and constipation. She also had concerns for constipation today. She still has reflux, that seems to be worsening. she would like to identify what the cause of her problem(s). She also noted that she had a bout of constipation alternating w/diarrhea. She also has other symptoms to include the migraines, joint/knee discomfort, and body aches. She is a consideration for rumination.

June 18,2023 Endoscopy results (look at 2022, compared to 2023).

LES/EGJ: low resting pressure

ESOPHAGEAL BODY: very weak. Only a few transmitted contractions

UES: normal pressure and normal relaxation

RESPONSE TO 5 RAPID SWALLOWS: very weak

SUMMARY: Ineffective esophageal motility

Esophageal body: Ineffective swallows, Not all swallows have failed peristalsis

90% of her swallows are ineffective

This study is positive for pathologic acid reflux with positive symptom correlation for cough, heartburn, and regurgitation.

June 3,2023. She presents reporting heartburn and bowel concerns. She continues to have heartburn even while on a regimen pantoprazole, and lots of tums. She also complains of bowel issues as she is not have a bowel movements on a daily basis if she does not take the Linzess.

August 24,2023. Her constipation continues, even when on Linzess and MiraLax. We discussed trying a different treatment since Linzess is not effective, I put her on amitizia.

September 14,2023. Patient advises of not having a BM in 3 weeks, so she tried amitizia and had a severe reaction. She saw an urgent care provider, who recommended she stop the medication, which I agree w/. She was on Linzess for the weeks prior and still didn't have adequate response.

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i cant eat

so lately i just haven’t had an appetite for anything and i’ve been nauseous and puking when i do eat. i’ve noticed that even when i ate like two hours ago the food still appears undigested. does anyone know what that could be or how to stop this from happening? it would be appreciated.

#DisorderedEating #Dysphagia #RuminationSyndrome #GastrointestinalDiscomfort #Gastroparesis

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I’m new here!

Hi, my name is Varsha. I'm here because my son has TBCK Syndrome, there are less than 200 cases diagnosed worldwide. My son V has profound hypotonia, epilepsy and Dysphagia as symptoms.
I am here so I can connect with other families in similar situation.
#MightyTogether

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New member & looking for answers due to complex case

#Porencephaly #story #exhaustion #help #Misdiagnosed #underdiagnosed #complexcase #26years #symptomlist #rejected #Support #LongPost

(If you took the time to read this your amazing, seriously!)

Hi. My name is Nick. I'm new here. As much as I loathe this, I'am a complex case. I've been dealing with an unusual dilemma. I get diagnosed with one set of diseases, then getting a second & third set of diagnosis that don't seem related to the 1st set of diagnosis. What do I mean? The genetic test are the first set of results. Then the porencephaly with other incidental findings are the 2nd set of diagnosis with the 3rd and most recent set being due to my throat symptoms: adult dysphagia, adenopathy, & neck crepitus with manual right shift of trachea." I can't be overthinking this but, I can't shake the feeling something is wrong possibly beyond the scope of porencephaly. I got accepted by nord for the campaign but that was about it. My rare disease submission never got posted & I got turned down by my geneticist for further testing with the remark of "There's nothing else I can do for you." *Even though I made mention of my cousin having a cyst that causes speech issues.* ( thanks alot.) Sigh* depressed face*. Oh well, guess I look forward. Along with neurology & spinal specialist in may I now have an neck ultrasound with possible echogram later this month on top of an ENT in late April. One might argue I'm doing this to myself but that would be the partial truth because I let something possibly dangerous get away with tearing me apart even though all the symptoms are painless.

Why? Why this sudden deterioration in health as of a year or so ago? All the waiting has lead to partial answers. I almost want someone to sit down & figure out what I should focus on treating & what needs to be ignored. Sometimes I wake up thinking about wanting to make a model train set or traveling to a distant place & enjoying it. Too bad the former is expensive & requires too much space for our basement. The latter doesn't happen enough for me.

I'm exhausted & ready to just give someone all my records/history & just say "figure it out." I've been wanting this to be over for a good while now but new things keep coming up & I feel like some time soon I'll stop going to doctors because I don't want to deal with the process of getting surprise diagnosis ten.

I've had issues since birth with a neonatal stroke that we now know has turned cystic & has given us a piece of it's mind having been through many doctor visits throughout my 26 years of my family & me searching for answers. Here's the rundown: List of symptoms

Larygnomlacia-infant historic

Tinnitus-started at age 15

Tmj-age 15

Eye tilting up-age 15

Floaters-age 15

Dysphagia*~2019 couldn't swallow liquid properly.

Pinched nerve in neck~2021 got better with chiropractic intervention diagnosed as pots.

Neck/throat clicking same time as dysphagia & pinched nerve. Got better with chiropractor but still have some dysphagia & throat clicking.

Feeling of food being stuck in throat*~2019

Recently diagnosed adenopathy, esophageal dysphagia, & neck crepitus.

Chiropractor caused spinal lean with digestive upset in early 2022. Digestion is ok now. But posture lean is still an issue.

Recently diagnosed through mri & x-ray with porencephaly (brain cyst) this took 26 years to diagnose, mucous retention cyst, hemosiderin deposit, choroid plexus cysts & scoliosis of upper region with mild lumbar retrolisthesis.

Grip weakness- started after leaving chiropractor in Feb. 2022

Alarming rate of deterioration from being relatively healthy to needing cane due to posture lean. Most recent symptom is waking up to my left arm on my chest & having difficulty keeping it straight.

There was a change in walking pattern as of a few years ago due to coordination challenges since toddlerhood.

At birth I had a neonatal stroke looking like a premiee at full term. There was an undescended testicle (corrected at 6 years), 2 small holes in heart that healed on their own, microcephaly concerns, intrauterine growth restriction though grew out of it very quickly to 6ft 3in, & thrombocytopenia at birth.

Have strabismus, nystagmus, hyperopia, optic blurring in right eye.

Posture lean causes opposing foot to stand on toes.

Followed closely as a child but was dropped when we moved states in 2011.

Been in colorado since june of 2017.

Use to have sensation in left arm of pulling sensation when peeing.

Genetics testing according to the geneticist is insignificant but carrier for cep290 maternally & have chromosome 4p31.3-32.1 microduplication syndrome paternally with unknown significance which falls under chromosome 4p duplication syndromes (only 85 in the world.)

Also have unusual anal quivering (seldom talked about)

Have seen multiple doctors including neurologist (seeing one in may.), 2 physical therapist, 3 chiropractors, , neuropsychologist (childhood), on my 3rd primary doctor & genetics. I'm also seeing a spine specialist in May.

In tears* someone help me put this all together because it's destroying me!

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Sickness and chronic illness

Does anyone have any tips on how to survive being sick when you have a chronic illness(or 5 illnesses lol). I am sick again because my meds make me immunocompromised and my friends and boyfriend didn’t know that and ended up getting me sick. It was an easy cold for them but I have a high fever body aches and I can barely stay awake. I have POTS and can’t stay hydrated because I get diarrhea when I’m sick because of the anxiety it causes. So if anyone has any tips please share them with me. #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Anxiety #Dysphagia #Sickness

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Slightly different story

I am a 79 yr old woman who from her poster child symptoms (and google) 3 months ago self-diagnosed even before i got to see dermatologist, rhuematologist, blood draws, muscle biopsy, etc. Since diagnosis of dermatomyositus I am taking prednisone (slowly weaning) and methotrexate. The main issue for me right now is dysphagia (trouble swallowing) and a great deal of pain in the throat. I have had an ultrasound on my throat and will have CT this week. Has anyone else experienced this? It seems to mystify my medical people. Any shared experiences would be appreciated. This is quite a journey.

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