No diagnosis and the fear of uncertainty.

Posted by lidiana @lidiana, Oct 9, 2022

Hello 👋🏻 this is my second open discussion here. The first one was about sharing your experience with the health care system now I can’t find it. Well I just wanted to share that I have been progressively ill for 11 months and I have tried my best so far. I have been diagnosed with HSD and POTS. I have had since this started:
✅recurrent abdominal pain
✅high d dimers
✅ high tumor markers CA 19.9 and Chromogranin A
✅ low iron saturation and ferritin
✅ hemorrhagic gastritis on February
✅ positive ANA and then negative not consistent
✅ weak positive Cardiolipin
✅ chest pain
✅ body pain like jelly fish or ants
✅ twitches and spasm etc in muscles
✅ new cyst on kidney, ovary and spine area.
✅ urine retention
✅ kidney stones
✅ 24/ hours high saturation calcium on urine
✅ inflammatory changes spots on bladder biopsy
✅ degenerative changes on bone scan
✅ constipation/diarrhea (oily, yellow, green, black, etc)
✅ PVCs and arrhythmias of my heart
✅ small pericardial effusion
✅ mitral valve prolapse (since baby)
✅ yellowish skin around my eyes
✅ lumps on tongue
✅ mouth mucosa total shedding
✅ mucosa in my last colonoscopy
✅ pain on ears, neck and nose
✅ discolor changes texture of my tongue
✅ dizziness, ringing, tingling and spinning senses.
✅ sensory alterations
✅ language and speech alterations
✅ bright light spots on vision, blurry vision.
✅ new changes in texture of uterus
✅ new ovary cyst
✅ extreme weakness and wasting
✅ extreme weight loss 132-116
✅ paleness
✅ blood spots on skin
✅ easy bruising
✅ easy bleeding
✅ menstrual clots
✅ bloody gums and pain on teeth
✅ molted skin and purple nails.

I’m really scared this is a sign of something greater (they keep downplay me) since I had medical history of carcinoid tumor or NET. I was referred by my local urologist to the OBGYN surgeon for a possible laparoscopic exploration since locals think it may be advanced endometriosis but it’s to broad systemic symptoms. I had asked for deeper investigation and explicitly biopsies. I’m feeling so sick I made a “Will” document 📃. I’m only 33 and this has been one of the hardest tasks. I’m still hopeful that my local or Mayo team would finally find some answers for now this is my reality. One that nobody seems to see or connect. I wish to connect. This is Mayo Connect.

What things have helped you to cope with this uncertainty while your body it’s deteriorating?

Thanks for any feedback 🙏🏻 Blessings 🌼

Lidiana Flores

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@lacy2

OH here is a question; should I type up a list of illnesses over the years to bring with me, say, to emerge, or new doctor/specialist? Sometimes I go for one specific thing, but perhaps some history would help them diagnose, or would it confuse them and make me look like a complainer!!!

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@lacy2 Yes, indeed, a list of previously diagnosed issues are a good thing, along with the dates of diagnosis if you can rustle that up! For example, the date of my first gout attack was the same day the medical center went to a new software system, and the ensuing mass confusion! Remember, many conditions have varying ways of manifesting themselves, so having a list of your symptoms as it relates to a specific condition will help. And you may find that the same symptoms appear under more than one condition. I also keep records that tell me and my medical team when those symptoms seem to manifest most [after eating (what/when), activity (what, what level), time of day, etc] so spotting a pattern can be more easily seen.

Fair warning with a smile, some may tell you your OCD is showing! Been there, done that!
Ginger

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Thank you so much all for sharing I really appreciate it 🌼 I do agree with documentation. I have had done the lists, pictures and videos. Even screenshot are super useful to use as evidence of you trying to be active and to be fair in the process. So you as a patient do your part and there’s evidence you did it, just in case they aren’t aware or doing what they should do. High critical thinking skills are very important, you can’t deceive an educated data informed person or patient. Also asking them that they write your input on the notes is a good strategy to make them do, help or evaluate their position. I don’t always have to agree with their proceeding but I need to be well educated and use the critical thinking skills to avoid falling in past generations mistakes. Maybe being in the pedagogy field has made me learn something. Here attached some pictures and ideas you can find to monitor/track your health. But there’s a lot of electronics that have apps and other features that you can share this information with your medical team (Example: Apple Watch and iPhone “Health” app, Fitbit and more).

🙏🏻 Blessings and healing for everyone 🌼❤️‍🩹

Ps. Sorry for my lack of artistic skills but that’s what I did to show doctors and the list it’s in Spanish but I had to redo it in English still so long. Don’t even know why I have everything on a Binder again can’t take the teacher out of me lol 😆

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Very interesting. I keep a lot of notes but they are all over the place or involve way back in years, few years or current as i am 79 in 2 days. Not sure if you live in large City but I am in small City which I think of as a town of 50,000 one hospital, just got our very first Cardiologist; no neurologist, no rheumatologist - not complaining, just saying. It's a 1.5 hour drive each way to see some specialists which isn't bad unless you don't drive, cant afford the gas, or in my case fecal incontinence and hard to shower in a public/restaurant washroom. We have 2 ents and if not urgent, one to two year wait; 3 ophthalmologists in one office and again 1 to 2 year wait if not urgent....so while yesterday I made a list of my non-ife-threastening illnesses I doubt any dr. wold read, well might glance at but most family doctors its one issue, ten minutes. A lot of our doctors/specialists are so overworked yet it seems many now take Fridays off esp.in Summer and 3 weeks vacation with no replacement etc. Two walk in clinics you have to be one of their patients; the other have to be one of the first 20 to arrive; the other closed down, so then sometimes have to go to emergency even tho not an emergency. Can be of course one to ten hour wait etc. Again, not complaining as better than many other countries, just saying its hard not only to see a dr. but for him/her to spend a lot of time with patients.....and it's getting worse and worse, even in Canada.

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@colleenyoung following up.

Update: I was recommended to see a polyneuropathy rheumatologist specialists. Hopefully this will help. Blessings 🙏🏻❤️‍🩹 healing

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@lacy2 @missjamieson I used a timeline maker to create my health time line. It did showed some patterns and also I think it could help the professionals visualize everything without confusion. Blessings and thank you so much for sharing your thoughts and ideas 🙏🏻 happy gratitude day ❤️

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