Not gonna lie.... Really nervous at this point....

Aug 6, 2021 10:52 PM

Renvea

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81

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3

I've had poor health for a while and finally decided to get serious about tackling it. Found a new Primary Medical Provider, and made an appointment for "new patient intake" for Sept 28th(soonest they had available). This past month, I was in urgent care/emergency room 4-5 times for various issues while waiting for this appointment. I was able to get my appointment moved up to Aug 30th.

Decided that I should be seen ASAP, so I switched my PMP to a different clinic that already had me in their system to get specialist referrals sooner(had open appointment within a week).

Wrote all my symptoms down and family history to bring in a physical list for the appointment. Here's kinda how it went:

Dr: So what brings you in today?
Me: *hands list*
Dr: Hey! A list! I love lists!
(Doctor starts reading list)
Me: ...
(Doctor's face starts going pale)
(Doctor flips paper over)
Dr: Is ... Is this Calculus?
Me: Oh, yeah. It's probably my husband's homework. I just grabbed what was sitting around.
(Hands Doctor "suspect list")
Me: These are a few things that line up with the symptoms.
(Doctor's face goes even more pale as he nods)

We agreed that my suspect list was about right, and were looking for where to start. He needed to excuse himself for several minutes, apologizing when he came back saying he needed to "decompress." I heard him through the door mentioning something about him having a family member go through something that was similar, but couldn't hear much else.

I hope I didn't break him.... He was fairly young, and I think he was new to the clinic.

Just.... When your symptoms get your medical provider concerned to the point of being shaken up, it tends to not be a good sign.

Now, before I get lectured about "don't google your symptoms," I recognize that I am not a doctor. On the other side of that, you don't need to be a mechanic to know that SOMETHING is wrong with your car. You'll likely need a mechanic to identify WHAT is wrong with your car, but if the symptoms are prominent enough, you can tell that something's off.

Symptoms:
Female, 5'4", 260 Lbs
---------------------------
Joint PainLow MPV
Chronic Low-Grade Fever
Rashes
-Butterfly Rash
-Open Sores
-"Ringworm" that isn't ringworm
Fatigue
Rapid Resting Pulse
Not menstruating (18 months, not pregnant)Lactation from one breast(never been pregnant)
Clotting problems
Memory Problems
Can't lose weight
Blind spots and distortion in central vision
Ear infections and hearing problems
Migraines
Trouble sleeping
Depression and Irritability
Dry mouth/eyes/genitals
Strong Metallic Taste
Overheating hands and feet to point of discomfort/pain
Hand numbness
Tonsil Stones
Acid Reflux

Family history
------------------------------
Autoimmune (Sister and Father)
Diabetes (both grandmothers)
Depression (Father, sister, aunt)
Chronic skin rash (Father)
Skin cancer (Aunt)
Hypothyroid (Sister and Mother)

Suspect list
-----------------------

Autoimmune
Pituitary Tumor
Bone marrow disorder
HypothyroidPCOS w/Breast tumor

Mostly venting... Thanks for being the void in which I can scream. Stay safe.

you did a giant leap in getting things resolved. good on you for being your own advocate.

4 years ago | Likes 7 Dislikes 0

Unilateral lactation is more suspicious of breast lesion. You almost certainly have PCOS. Work those out and see what hasn’t resolved in

4 years ago | Likes 1 Dislikes 0

A few months.

4 years ago | Likes 1 Dislikes 0

So what’s the verdict?

4 years ago | Likes 2 Dislikes 0

Just went in today. Getting tests done ASAP next week.

4 years ago | Likes 2 Dislikes 0

Listing autoimmune but not which autoimmune, specifics there could be helpful for the doc

4 years ago | Likes 2 Dislikes 1

Lupus, Rheumatoid arthritis, Psoriasis, and Celiac were listed under autoimmune. Father - unspecified . Sister - Celiac

4 years ago | Likes 1 Dislikes 0

so Lupus?

4 years ago | Likes 1 Dislikes 0

Who told you you taste like metal? What kind of metal? Iron? Nickel? It wasn't tungsten was it? Bet it was fucken tungsten

4 years ago | Likes 3 Dislikes 1

Well, my maiden name has "Nickel" in it, so that makes sense. :P

4 years ago | Likes 2 Dislikes 0

For me it was sensitivity to grains (wheat, rice, corn, oats, sugar, etc) and dairy; everything cleared up when I stopped eating those

4 years ago | Likes 4 Dislikes 1

My sister has Celiac, so it's on the list as a suspect.

4 years ago | Likes 1 Dislikes 0

How are you alive? And by that I mean functioning day to day? Just masking the symptoms?

4 years ago | Likes 2 Dislikes 0

4 years ago | Likes 2 Dislikes 0

I pretty much don't leave the house, have a bunch of medications that manage the more severe symptoms, and have an amazing husband.

4 years ago | Likes 2 Dislikes 0

Not a Dr, but the PCOS was what I was thinking before getting to your suspect list. But instead of breast, ovarian tumor bc of no 1/?

4 years ago | Likes 2 Dislikes 0

menstruation w/lactation. Lack of weight loss could be weight loss but w/tumor growth equaling out.

4 years ago | Likes 2 Dislikes 0

My abdominal muscle wall feels normal and is not distended, and I don't need to pee super often, so the weight is probably just fat.

4 years ago | Likes 1 Dislikes 0

Ovarian Tumor is getting added to the list, though probably not the cause of weight problem. Sedentary lifestyle due to pain is more likely.

4 years ago | Likes 1 Dislikes 0

Something to consider if these come back clean, tick borne infections can get really nasty. Not just Lyme but a ton of co-infections. They

4 years ago | Likes 6 Dislikes 0

Are hard to diagnose sometimes until you directly test for them. Which is unfortunately a tad expensive. Do you remember any tick bites?

4 years ago | Likes 4 Dislikes 0

Most of the symptoms have been persistent for at least a few years, and lyme came back negative.

4 years ago | Likes 2 Dislikes 0

1 tick bite recently, but WELL after all other symptoms had already presented.

4 years ago | Likes 2 Dislikes 0

I'm surprised that previous visits to ER didn't lead to diagnosis.

4 years ago | Likes 22 Dislikes 1

If you can survive all the way to the door of the hospital, the ER will kick you the fuck out immediately. Diagnose? LOL

4 years ago | Likes 1 Dislikes 0

They stabilize you and dump you.

4 years ago | Likes 18 Dislikes 3

Awww, that's cute that you think they even stabilize you.

4 years ago | Likes 4 Dislikes 1

You do realize the ER deals in episodic care, and should not be used to manage chronic problems. She needs to have a competent PCP.

4 years ago | Likes 6 Dislikes 0

Yes. That why I responded to the other poster who asked why this wasn’t found at the ER that they “stabilize and dump”

4 years ago | Likes 5 Dislikes 1

I dont think he went to decompress...probably left took shit up

4 years ago | Likes 9 Dislikes 1

I mean, I'd believe it, but I did hear him through the door sounding shaken and mentioning something about a family member...

4 years ago | Likes 2 Dislikes 0

what came to mind reading your post https://imgur.com/1cMD7SM

4 years ago | Likes 6 Dislikes 0

I read this as left to take a shit the first time for some reason.

4 years ago | Likes 12 Dislikes 0

Yeah my brain skipped a second and combined take a look

4 years ago | Likes 5 Dislikes 0

Took a book, Reading Rambo!

4 years ago | Likes 1 Dislikes 0

..... That doesn't make sense either. Is it supposed to be "to look"?

4 years ago | Likes 3 Dislikes 0

To take a look

4 years ago | Likes 1 Dislikes 1

Probably left to take a look shit up?

4 years ago | Likes 3 Dislikes 0

Given my wife’s family history I’m going to say you have either lupus or rheumatoid arthritis. Have your ANA checked. You need meds stat.

4 years ago | Likes 3 Dislikes 0

ANA came back negative, but Lupus is my top suspect at this point.

4 years ago | Likes 2 Dislikes 0

Probably in parallel with PCOS.

4 years ago | Likes 1 Dislikes 0

With autoimmune there can be multiple different competing issues. Don’t ever take no for an answer. You’ll need to be your best advocate

4 years ago | Likes 2 Dislikes 0

Don’t let them bully you into accepting something that isn’t right for you.

4 years ago | Likes 2 Dislikes 0

Yep. Had trouble putting my foot down before due to untreated/improperly-treated depression. Holding my ground firmly this time.

4 years ago | Likes 2 Dislikes 0

Good. If you ever want to compare notes, let me know. Happy to share what we’ve learned over time.

4 years ago | Likes 1 Dislikes 0