1. < Just Want to Talk

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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Valerie | @lacy2 | Oct 9, 2022

@lidiana Just noticed your posting and may I say am very sorry to read what your are experiencing and at such a young age. I am not familiar with some of the illnesses your are struggling with on your list. Actually just wrote my own list because like you have so many issues I feel there must be something causing everything, and my list getting longer for over two years, but I am over double your age. I made a will over 30 yrs ago when finally diagnosed with cancer of cervix... after months and 3 doctors. There is also of course the anxiety worry and depression goes along with one illness or multiple illnesses. One nurse practitioner tol d me there are many others with worse illnesses than mine and they are coping! So I was told quite bluntly that I am not coping and I agree... some people cope better than others. As I am typing I am getting bouts of pressure in head on and off ... but not something easily fixed and the shortage of doctors (I am in Canada) especially if you don't live near large City with teaching hospitals. I am sure some comment will be made here giving suggestions on how to cope and I really hope they can help you, but at my age and with overall fatigue i don't feel much hope in the coping department. Cognitive Behavioural Therapy might be recommended and it does help but certainly not a cure... but I would say for you to try it and see if it helps you... it has helped many people cope. I wish you the very best and maybe a doctor will somehow tie all these things together and come up with a diagnosis/treatment that will let you enjoy the rest of your life..... hugs, J.💙

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 9, 2022

@lidiana We here on Mayo clinic Connect are not doctors. We are members like yourself, sharing our experiences in our health journeys.

I certainly can understand frustration while we find answers, as can so many others here. It seems all medical facilities, from mediocre [in our individual opinions] to world class, from local to regional teaching hospitals, are having a difficult if not impossible time to find openings for all who want/need to be seen!

Besides Mayo Clinic, are there local or nearby large teaching hospitals associated with a university, that your primacy care can refer you to? I wonder if a good internist would be a place to start, given the list of symptoms you posted?
Ginger

REPLY
1 reply
lidiana | @lidiana | Oct 9, 2022
In reply to @gingerw "@lidiana We here on Mayo clinic Connect are not doctors. We are members like yourself, sharing..." + (show)
@gingerw

@lidiana We here on Mayo clinic Connect are not doctors. We are members like yourself, sharing our experiences in our health journeys.

I certainly can understand frustration while we find answers, as can so many others here. It seems all medical facilities, from mediocre [in our individual opinions] to world class, from local to regional teaching hospitals, are having a difficult if not impossible time to find openings for all who want/need to be seen!

Besides Mayo Clinic, are there local or nearby large teaching hospitals associated with a university, that your primacy care can refer you to? I wonder if a good internist would be a place to start, given the list of symptoms you posted?
Ginger

Jump to this post

Thank you so much for sharing your thoughts. I never asked for medical advice on my post. I had already been seen by medical facilities. I was sharing my experience and asking about more peoples experiences about coping with the process in their journey. I really believe this place was meant to “Connect” so I was trying to see shared unbiased (as objective possible) experiences to connect. Thank you so much for the feedback I really appreciate it. 🌼 Blessings 🙏🏻

REPLY
1 reply
lidiana | @lidiana | Oct 9, 2022
In reply to @lacy2 "@lidiana Just noticed your posting and may I say am very sorry to read what your..." + (show)
@lacy2

@lidiana Just noticed your posting and may I say am very sorry to read what your are experiencing and at such a young age. I am not familiar with some of the illnesses your are struggling with on your list. Actually just wrote my own list because like you have so many issues I feel there must be something causing everything, and my list getting longer for over two years, but I am over double your age. I made a will over 30 yrs ago when finally diagnosed with cancer of cervix... after months and 3 doctors. There is also of course the anxiety worry and depression goes along with one illness or multiple illnesses. One nurse practitioner tol d me there are many others with worse illnesses than mine and they are coping! So I was told quite bluntly that I am not coping and I agree... some people cope better than others. As I am typing I am getting bouts of pressure in head on and off ... but not something easily fixed and the shortage of doctors (I am in Canada) especially if you don't live near large City with teaching hospitals. I am sure some comment will be made here giving suggestions on how to cope and I really hope they can help you, but at my age and with overall fatigue i don't feel much hope in the coping department. Cognitive Behavioural Therapy might be recommended and it does help but certainly not a cure... but I would say for you to try it and see if it helps you... it has helped many people cope. I wish you the very best and maybe a doctor will somehow tie all these things together and come up with a diagnosis/treatment that will let you enjoy the rest of your life..... hugs, J.💙

Jump to this post

Thank you so much for sharing this with me I really appreciate it. 🙏🏻 blessings 🌼

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 9, 2022

Hi @lidiana, Just thought I would chime in and tell you how to find your other comments and discussions. If you click on your member name @lidiana, it takes you to your profile where you can see a list of any discussions you have started and you can also click on Comments at the left and it shows you a listing of all your comments. You can also get to your profile by clicking the small person icon at the top right of the screen.

Hoping you find some answers or treatment that helps!

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 9, 2022
In reply to @lidiana "Thank you so much for sharing your thoughts. I never asked for medical advice on my..." + (show)
@lidiana

Thank you so much for sharing your thoughts. I never asked for medical advice on my post. I had already been seen by medical facilities. I was sharing my experience and asking about more peoples experiences about coping with the process in their journey. I really believe this place was meant to “Connect” so I was trying to see shared unbiased (as objective possible) experiences to connect. Thank you so much for the feedback I really appreciate it. 🌼 Blessings 🙏🏻

Jump to this post

@lidiana I have multiple health issues, starting all the way back to 1988 with a diagnosis of Systemic Lupus. But that diagnosis came at the end of many months of testing, starting with basic bloodwork, then the next test was based on what they found. There were specialized tests run, skin biopsies, remedies to deal with immediate symptoms, etc. It wasn't easy. And for years, some of the symptoms I manifested were attributed to the lupus.

Eventually, with advancements in medicine, and over the course of literally decades, a series of doctors [I had wandering feet and moved a lot!] other possible conditions were brought up. That is how we discovered my ultra-rare kidney disease, and my current blood cancer. But, none of this was a one-shot thing. It took a lot of investigation, ruling out potential concerns, and all. Apparently, my immune system is an overachiever, like I am in general.

How did/do I cope? Relying on trusted medical sources [not Dr. Google!], reaching out for information when necessary. Trusting those on my medical team that I have picked to be my care providers. Yes, I have changed doctors when I felt it was in my best interest. Believing in myself.
Ginger

REPLY
1 reply
lidiana | @lidiana | Oct 9, 2022

Thank you so much for sharing this with me I really appreciate it 🙏🏻 blessings and healing 🙏🏻🌼

REPLY
Valerie | @lacy2 | Oct 9, 2022
In reply to @gingerw "@lidiana I have multiple health issues, starting all the way back to 1988 with a diagnosis..." + (show)
@gingerw

@lidiana I have multiple health issues, starting all the way back to 1988 with a diagnosis of Systemic Lupus. But that diagnosis came at the end of many months of testing, starting with basic bloodwork, then the next test was based on what they found. There were specialized tests run, skin biopsies, remedies to deal with immediate symptoms, etc. It wasn't easy. And for years, some of the symptoms I manifested were attributed to the lupus.

Eventually, with advancements in medicine, and over the course of literally decades, a series of doctors [I had wandering feet and moved a lot!] other possible conditions were brought up. That is how we discovered my ultra-rare kidney disease, and my current blood cancer. But, none of this was a one-shot thing. It took a lot of investigation, ruling out potential concerns, and all. Apparently, my immune system is an overachiever, like I am in general.

How did/do I cope? Relying on trusted medical sources [not Dr. Google!], reaching out for information when necessary. Trusting those on my medical team that I have picked to be my care providers. Yes, I have changed doctors when I felt it was in my best interest. Believing in myself.
Ginger

Jump to this post

...so yu must have had a lot of stress dealing with all this Ginger... looking back I could deal with a lot more when I was younger but as ageing, will be 79 in 2 days, I find I do not have the strength or resilience I once had... and as the new illnesses present themselves the list grows longer and I can almost see the dr or nurse sigh as I tell them of even more.... I prefer saying Internet Searches than Dr.Google, but know what you mean but when I did not have a doctor for 2 yrs as left town i did search with symptoms mainly to find out; gosh I have these symptoms, should I phone GoodDrs., or go to Emerge, try a home remedy? Now its either information overload or six web sites with six different results for same symptoms but with covid and the long wait for drs. it is tempting... i waited one year for ent and as I said on here he talked about his problems not mine, and thats true. I really like this site as moderators fair , also some have had same illnesses, and it is reassuring to hear how others have coped, yet I am still having problems handling my pains and symptoms... and the slowness of waiting 2 months for a referral and 4 months for an appointment, but know i am not alone....still, it is hard dealing with it all night and day; again thanks for sharing your personal story. j.

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Valerie | @lacy2 | Oct 9, 2022

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!!!

REPLY
1 reply
missjamieson | @missjamieson | Oct 9, 2022

I think it is good to have written list as many conditions impact on each other

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