1. < Cancer

My History of Melanoma & Currently Very Sick

Posted by notdefinedbyyou @notdefinedbyyou, Jan 8 11:08am

Who else has a history of Malignant Melanoma and now you’re scared whenever you get severely sick?

I had a cancerous tumor in my chest when i was 17 years old due to Melanoma. I’m 26 now. I had to have the lymph node mapping done, with the radioactive dye shots in the location of the tumor, and to this day i still claim it as the worst physical pain i’ve ever experienced in life..even though the recovery process from surgery was brutal too. I had the tumor removed which resulted in 20+ stitches in my chest, and they also removed some lymph nodes from my armpit. I was “lucky” because the cancer did not spread so i did not have to do radiation or chemo. And i put the word “lucky” in quotations because i hate that word when talking about cancer. I was treated at a children’s hospital where i had to see sick children and babies fighting for their health when they weren’t even old enough to fully comprehend what they were going through, while i was the 17 year old patient that fully understood why we were all there, and it broke my heart so bad that sometimes i couldn’t even get myself to sit in the waiting room..and then i felt guilty for waiting in the hallway instead of being with them.
Fast forwarding through time. I’ve had many complications with my health and i have been seen at Mayo Clinic maybe 4-5 years ago i think (honestly it’s hard to keep track of everything). And i am now on the wait list with Mayo again because i’ve been sick for nearly 3 months now.
I’ve unintentionally lost about 20-25 lbs within 3-4 months (i believe i started to lose weight before the severe symptoms started).
One night i was having very bad Vertigo and it was scaring me because i haven’t dealt with that in a long time, so i went to a nearby hospital. (I also had a rash on my ear that was bright red and burning, but the hospital didn’t care about that). They did blood work, a urine test, a head CT, and a chest X-Ray. Blood work showed that some levels are high and some are low (but they didn’t tell me that, i had to find out from records that my primary pulled from the hospital). Urine test showed hazy appearance and a very small amount of blood. Head CT & Chest X-Ray came back clear. The hospital diagnosed me with Vertigo and prescribed me a suppository for hemorrhoids (because i had been having bad diarrhea and had / still have hemorrhoids).
Fast forwarding. The diarrhea colors and frequency became worse. I started having what i believe is muscle spasms in my stomach and i was constantly going to the bathroom, so i saw my primary after the hospital, as mentioned before.
Primary eventually referred me to a GI Specialist. GI doctor had me do a stool sample and she originally scheduled me for a Colonoscopy/Endoscopy for March of 2024 but it got pushed up to February 7, 2024. Stool sample tested positive for C Diff. I’m on Vancomycin now for 14 days for the C Diff.
I feel like i’ve only been getting worse with time. I have temperature fluctuations, random body pains that don’t make any sense to me, i still have the stomach spasms at times, the vertigo can be really bad at times, i feel weak and faint a lot of the time, it’s hard to swallow cold liquids and specific solid foods, i get random small rashes on my body that itch really bad but i try my best to tell myself that maybe it’s just eczema from the stress of being sick for so long, i’ve had a huge loss of appetite but i force myself to eat because i know i need to, i’m having upper respiratory issues too that have lasted for about a month if not longer such as coughing and always blowing my nose, and i know there are more symptoms but that’s all i can think of for right now.
I know that my Melanoma years ago was in my chest, but i had several cases of Severe Dysplastic Nevus for a few years after the Melanoma and they were in random parts all over my body. Such as my legs, my back, and my arms.
I’ve been trying my best to think rationally/logically and tell myself that my blood work from the hospital when all of this started would’ve alerted someone enough to do more to help. Even though some of my levels were high or low, my white blood cell count was normal..so, that’s good right?
I try to tell myself that i do have C Diff and i’m not a doctor and i’m not really educated on it so maybe all of these symptoms really are just from the C Diff and there’s nothing else that’s wrong.
I try to believe people when they tell me i’m just being paranoid because trust me…i’d love to know that i am just being paranoid and there’s nothing else to worry about.
But it’s sooo hard to not worry. It’s really hard to not wonder “what if”.
And if you can relate to this, i’m so sorry.

Interested in more discussions like this? Go to the Cancer Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Jan 25 6:12pm
In reply to @notdefinedbyyou "updates: i did a 2nd stool sample and some blood work. i’m still very sick but..." + (show)
@notdefinedbyyou

updates:
i did a 2nd stool sample and some blood work. i’m still very sick but i’m confused because i didn’t test positive for C Diff this time. I do have some levels that are High and Low, but i’m not a doctor so none of it makes sense to me. BUN/crea ratio: 9 (reference range: 10-20). A/G Ratio is a little low: 1.0 (reference range: 1.2-3.6). Platelets: 462 (reference range: 140-440). Abs Lymphocytes Auto is a little high: 3.45 (reference range: 0.90-3.00). Hopefully my telehealth appointment with the doctor from Mayo this week will be helpful, hopefully she’ll have an idea for what’s going on with me. And i’m sorry to anyone who’s commented on here and i haven’t responded, there’s been a lot going on with my health so there’s a lot for me to keep track of right now.

Jump to this post

It will be a relief to finally have the consult with the doctor. She’ll go over your labs with you and talk with you about what you’re experiencing.
From all of my experiences with Mayo doctors, they’re very attentive and will actually listen to you. I’ve never felt rushed. But one thing that is helpful is to be prepared for the appointment whether tele-health or in person.

It’s a good idea to make notes of what you want to say to the doctor. List your symptoms and when they started. Also put down any questions you want to ask or details you think might be important for the doctor.
It’s so easy to get sidetracked and we can forget what we wanted to say. So those notes come in handy! I still do this for my follow-up appointments. In fact my doctor now expects me to have notes because we joke about my ‘laundry list’.
It’s great that you’re not testing positive for C-diff! It can take some time for things to return to normal. Here’s a good article about recovering from C-diff that you might find helpful.
https://www.verywellhealth.com/long-term-problems-c-diff-5218658

Wishing you all the best and hopefully you find some answers! Will you let me know what you find out?

REPLY
1 reply
notdefinedbyyou | @notdefinedbyyou | Jan 26 12:30pm
In reply to @loribmt "It will be a relief to finally have the consult with the doctor. She’ll go over..." + (show)
@loribmt

It will be a relief to finally have the consult with the doctor. She’ll go over your labs with you and talk with you about what you’re experiencing.
From all of my experiences with Mayo doctors, they’re very attentive and will actually listen to you. I’ve never felt rushed. But one thing that is helpful is to be prepared for the appointment whether tele-health or in person.

It’s a good idea to make notes of what you want to say to the doctor. List your symptoms and when they started. Also put down any questions you want to ask or details you think might be important for the doctor.
It’s so easy to get sidetracked and we can forget what we wanted to say. So those notes come in handy! I still do this for my follow-up appointments. In fact my doctor now expects me to have notes because we joke about my ‘laundry list’.
It’s great that you’re not testing positive for C-diff! It can take some time for things to return to normal. Here’s a good article about recovering from C-diff that you might find helpful.
https://www.verywellhealth.com/long-term-problems-c-diff-5218658

Wishing you all the best and hopefully you find some answers! Will you let me know what you find out?

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thank you so much for your kind words and advice, i really appreciate it. i’ll make sure to check out the link you gave me about the C Diff, once i’m calm enough to do so. i did my telehealth appointment with the doctor from Mayo today and it was very emotional. she didn’t have all of my records so she asked me to send her copies of my first stool sample when the appointment is over. she’s not exactly sure what she can do for me because i didn’t test positive for the C Diff in the 2nd stool sample and i’m having some symptoms that aren’t even part of my GI issues. so. because of my medical history with the Melanoma and all of the symptoms i’m having she’s referring me to Internal Medicine at Mayo but it doesn’t mean i’ll definitely get an appointment (i forgot the reason for why, but hopefully i get one), and she has also ordered a PET CT Scan for me to do at Mayo. the scan is already scheduled for 01/30/24, so in just a few days. i’ve had PET Scans done before, back when i had the Melanoma, but i’m definitely very nervous and i have a lot of anxiety. Also, reading the Visit Summary & Notes was sad. the Notes mentioned how she is concerned about a possible recurrence of the Melanoma because of the symptoms i’m having like the severe weight loss, night sweats, etc.
I try my best to “not worry until you know for a fact that you have something to worry about”, but it’s a little easier said than done.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 26 2:03pm
In reply to @notdefinedbyyou "thank you so much for your kind words and advice, i really appreciate it. i’ll make..." + (show)
@notdefinedbyyou

thank you so much for your kind words and advice, i really appreciate it. i’ll make sure to check out the link you gave me about the C Diff, once i’m calm enough to do so. i did my telehealth appointment with the doctor from Mayo today and it was very emotional. she didn’t have all of my records so she asked me to send her copies of my first stool sample when the appointment is over. she’s not exactly sure what she can do for me because i didn’t test positive for the C Diff in the 2nd stool sample and i’m having some symptoms that aren’t even part of my GI issues. so. because of my medical history with the Melanoma and all of the symptoms i’m having she’s referring me to Internal Medicine at Mayo but it doesn’t mean i’ll definitely get an appointment (i forgot the reason for why, but hopefully i get one), and she has also ordered a PET CT Scan for me to do at Mayo. the scan is already scheduled for 01/30/24, so in just a few days. i’ve had PET Scans done before, back when i had the Melanoma, but i’m definitely very nervous and i have a lot of anxiety. Also, reading the Visit Summary & Notes was sad. the Notes mentioned how she is concerned about a possible recurrence of the Melanoma because of the symptoms i’m having like the severe weight loss, night sweats, etc.
I try my best to “not worry until you know for a fact that you have something to worry about”, but it’s a little easier said than done.

Jump to this post

I didn’t have melanoma but I had my own crazy cancer odyessy with leukemia. So I know exactly what you mean with your comment of trying ‘not worry until you know for a fact that you have something to worry about’? So we’ll be having fingers crossed for good news so you can exhale!

There can be some lingering side-effects after having C-diff that take a little extra time to recover from, even after you no longer test positive. So that article may at least give you an idea what is happening. I do hope you can get in to see an internist at Mayo soon. I know there are often more demands for appointments than there is availability so that may be what your doctor mentioned. But it may help your cause by the fact that she is a Mayo doctor making an inside referral. Things can happen pretty quickly in the clinic.

I know this seems to be all coming at you quickly but honestly, getting this next scan out of the way so you know what you’re dealing with is the best way to wrap your head around a future plan. Not know is always like being in limbo. You can’t make plans, your head is filled with all this uncertainty and the body reacts to this stress. Knowledge is power…and armed with that, you’ll be able move forward again.

In terms of the PET scan, are you claustrophobic? It can be helpful to use an anti anxiety med. If you don’t have any on hand, you can contact your Mayo doctor through the portal and get a small prescription of lorazipam (Ativan) for the procedure. It’s really convenient to pick it up at the Mayo pharmacy.

I’ll be thinking of you on the 30th and hoping for only good news! Sending a hug! Keep in touch, ok?

REPLY
notdefinedbyyou | @notdefinedbyyou | Jan 31 5:06am

update:
i had my PET Scan done at Mayo yesterday and they called back pretty quick with the results. They found “fdg uptakes” in my head, my neck, and my left tonsil.
The results say:
“Relatively symmetric FDG uptake in the lymphoid tissues of the head and neck is likely physiological but given the relative intense FDG uptake recommend correlation with direct examination to rule out occult malignancy. For reference, FDG uptake along the left palatine tonsil is max SUV of 10.7, best image 86.”

“CHEST: Amorphous FDG uptake along the anterior mediastinum is likely benign hyperplasticity thymus with a maximum SUV of 3.3, best image 149. No pathologically enlarged or hyper metabolic supraclavicular, mediastinal, hilar, or axillary lymph nodes.”

“Postoperative changes are seen along left axilla. No nodular hypermetabolic focus in either breast to suggest malignancy”.

“No suspicious pulmonary nodules.”

ABDOMEN/PELVIS:
“Heterogeneous FDG uptake of the liver and spleen without focal hypermetabolic lesions. No nodular hypermetabolic focus along the gallbladder, pancreas, adrenal glands, or kidneys to suggest malignancy.”

“No pathologically enlarged hypermetabolic mesenteric or retroperitoneal lymph nodes. No focal hypermetabolic bowel thickening or evidence of obstruction.”

MUSCULOSKELETAL:
“Heterogeneous FDG uptake in the skeleton. No suspicious lytic or blastic osseous lesions. No hypermetabolic cutaneous lesions appreciated”.

Now. I don’t know what any of this means and i’m very confused. But. I’m being referred or transferred to an ENT specialist there at Mayo because of what they found from the PET Scan. I should be hearing from Scheduling sometime today to make that appointment. I’ll have to go in person, no more telehealth appointments, and i was told that they’re probably gonna want to put me through more tests to figure out what’s going on exactly.
They told me that they did not find a recurrence of the Melanoma, so that’s good and i’m happy to hear that. But. i don’t understand why this scan found these “uptakes” and the person i spoke with yesterday said they’re most concerned about my head, neck, and left tonsil. I’m kind of wondering if i should be seeing an oncologist just because of my history even if they didn’t find Melanoma specifically, but i’m not a doctor, so i’m hoping they know for sure that an ENT specialist can help with whatever’s going on.
I’m the one who pushed for me to have a PET Scan. These past few months of me being so sick, i had asked two different doctors (not affiliated with Mayo) for them to put me through a PET scan but they were both concerned that i wouldn’t be able to afford it so they refused to schedule me for one. I took matters into my own hands by asking my most recent/new doctor at Mayo for them to put me through one, and now they’ve found these “uptakes”. If it weren’t for me speaking up and pushing for this, i probably would’ve never had this scan. So because of that, because of the fact that i had to do the job of the doctors i’ve had these past few months..i want to trust Mayo completely because i have zero issues with them..but i’ve lost so much trust and faith in doctors these past few months (even if they’re not affiliated with Mayo). I’m just really hoping that i can figure out what exactly is going on and why i’ve been so sick, and preferably as soon as possible. I’m still trying my best to not fully worry because i don’t have any clear answers yet as to what’s going on, but if i’m being totally honest, i’m kind of scared. For me, PET Scans have always been the “cancer scan” because i had to do them back when i had the Melanoma when i was 17. I know that it detects other things and i shouldn’t jump to conclusions, but, it’s a little easier said than done with the kind of medical history that i have.
i’ll try my best to keep posting updates but i can’t promise anything because if at any point i find out that this is something serious, i’m gonna have a lot more in my life to focus on if you know what i mean.
And again, thank you to anyone who leaves a comment on here and i’m sorry if i don’t respond or if it takes me a while to respond..there’s just so much that i’m trying to process and work through right now. Lots of love to those of you who show genuine concern and care, it means more to me than you’ll ever know, even if we don’t know each other.
I’m not sure if it’s allowed for me to mention this on here, but i tend to post a lot of health updates on TikTok if anyone’s on that platform, and my username is notdefinedbyyou . If you comment on any of my posts on tiktok saying you’re from Mayo Connect, i’ll definitely follow you back.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 31 9:34am
In reply to @notdefinedbyyou "update: i had my PET Scan done at Mayo yesterday and they called back pretty quick..." + (show)
@notdefinedbyyou

update:
i had my PET Scan done at Mayo yesterday and they called back pretty quick with the results. They found “fdg uptakes” in my head, my neck, and my left tonsil.
The results say:
“Relatively symmetric FDG uptake in the lymphoid tissues of the head and neck is likely physiological but given the relative intense FDG uptake recommend correlation with direct examination to rule out occult malignancy. For reference, FDG uptake along the left palatine tonsil is max SUV of 10.7, best image 86.”

“CHEST: Amorphous FDG uptake along the anterior mediastinum is likely benign hyperplasticity thymus with a maximum SUV of 3.3, best image 149. No pathologically enlarged or hyper metabolic supraclavicular, mediastinal, hilar, or axillary lymph nodes.”

“Postoperative changes are seen along left axilla. No nodular hypermetabolic focus in either breast to suggest malignancy”.

“No suspicious pulmonary nodules.”

ABDOMEN/PELVIS:
“Heterogeneous FDG uptake of the liver and spleen without focal hypermetabolic lesions. No nodular hypermetabolic focus along the gallbladder, pancreas, adrenal glands, or kidneys to suggest malignancy.”

“No pathologically enlarged hypermetabolic mesenteric or retroperitoneal lymph nodes. No focal hypermetabolic bowel thickening or evidence of obstruction.”

MUSCULOSKELETAL:
“Heterogeneous FDG uptake in the skeleton. No suspicious lytic or blastic osseous lesions. No hypermetabolic cutaneous lesions appreciated”.

Now. I don’t know what any of this means and i’m very confused. But. I’m being referred or transferred to an ENT specialist there at Mayo because of what they found from the PET Scan. I should be hearing from Scheduling sometime today to make that appointment. I’ll have to go in person, no more telehealth appointments, and i was told that they’re probably gonna want to put me through more tests to figure out what’s going on exactly.
They told me that they did not find a recurrence of the Melanoma, so that’s good and i’m happy to hear that. But. i don’t understand why this scan found these “uptakes” and the person i spoke with yesterday said they’re most concerned about my head, neck, and left tonsil. I’m kind of wondering if i should be seeing an oncologist just because of my history even if they didn’t find Melanoma specifically, but i’m not a doctor, so i’m hoping they know for sure that an ENT specialist can help with whatever’s going on.
I’m the one who pushed for me to have a PET Scan. These past few months of me being so sick, i had asked two different doctors (not affiliated with Mayo) for them to put me through a PET scan but they were both concerned that i wouldn’t be able to afford it so they refused to schedule me for one. I took matters into my own hands by asking my most recent/new doctor at Mayo for them to put me through one, and now they’ve found these “uptakes”. If it weren’t for me speaking up and pushing for this, i probably would’ve never had this scan. So because of that, because of the fact that i had to do the job of the doctors i’ve had these past few months..i want to trust Mayo completely because i have zero issues with them..but i’ve lost so much trust and faith in doctors these past few months (even if they’re not affiliated with Mayo). I’m just really hoping that i can figure out what exactly is going on and why i’ve been so sick, and preferably as soon as possible. I’m still trying my best to not fully worry because i don’t have any clear answers yet as to what’s going on, but if i’m being totally honest, i’m kind of scared. For me, PET Scans have always been the “cancer scan” because i had to do them back when i had the Melanoma when i was 17. I know that it detects other things and i shouldn’t jump to conclusions, but, it’s a little easier said than done with the kind of medical history that i have.
i’ll try my best to keep posting updates but i can’t promise anything because if at any point i find out that this is something serious, i’m gonna have a lot more in my life to focus on if you know what i mean.
And again, thank you to anyone who leaves a comment on here and i’m sorry if i don’t respond or if it takes me a while to respond..there’s just so much that i’m trying to process and work through right now. Lots of love to those of you who show genuine concern and care, it means more to me than you’ll ever know, even if we don’t know each other.
I’m not sure if it’s allowed for me to mention this on here, but i tend to post a lot of health updates on TikTok if anyone’s on that platform, and my username is notdefinedbyyou . If you comment on any of my posts on tiktok saying you’re from Mayo Connect, i’ll definitely follow you back.

Jump to this post

Good morning, @notdefinedbyyou. You’ve done a really great job of advocating for yourself in pushing to have these tests run. From reading these results of your PET scan, you have to be relieved to see that there is no sign of any melanoma malignancy.
However, you’re still feeling miserable and want to find out the cause. I know you’re not very eager to trust doctors anymore. But from my experience with Mayo Clinic, I feel confident in saying that you are in excellent hands and can trust your doctors to help you determine what’s going on with your body.
The next step for you is to see a ENT because of the focus on the neck in your PET scan.
The note on your results said, “… recommend correlation with direct examination…” So this is the next likely step to have an ENT check your throat/tonsil and neck area in person. This can’t be done effectively over a tele-visit.

Mayo physicians work collaboratively which means if you need another specialist, that doctor will be brought in automatically to your team. So there’s no need for you to search for an oncologist. If the areas on your tonsil or neck turns out to be suspicious you’ll have a referral right away. I’ve had this happen with my experience at Mayo. These doctors work flawlessly together to find solutions and answers. So please try to relax and place your trust in these doctors to have your back.

You do have a a lot of life left to live and by following these next steps you’ll have doctors willing to help you get back to a healthy life. Sending you a hug and best wishes for only good news with your upcoming ENT appt. I’m like that old auntie who likes to keep track of her family, so let me know what you find out, ok?

REPLY
gisellef | @gisellef | Feb 2 7:55am
In reply to @notdefinedbyyou "update: i had my PET Scan done at Mayo yesterday and they called back pretty quick..." + (show)
@notdefinedbyyou

update:
i had my PET Scan done at Mayo yesterday and they called back pretty quick with the results. They found “fdg uptakes” in my head, my neck, and my left tonsil.
The results say:
“Relatively symmetric FDG uptake in the lymphoid tissues of the head and neck is likely physiological but given the relative intense FDG uptake recommend correlation with direct examination to rule out occult malignancy. For reference, FDG uptake along the left palatine tonsil is max SUV of 10.7, best image 86.”

“CHEST: Amorphous FDG uptake along the anterior mediastinum is likely benign hyperplasticity thymus with a maximum SUV of 3.3, best image 149. No pathologically enlarged or hyper metabolic supraclavicular, mediastinal, hilar, or axillary lymph nodes.”

“Postoperative changes are seen along left axilla. No nodular hypermetabolic focus in either breast to suggest malignancy”.

“No suspicious pulmonary nodules.”

ABDOMEN/PELVIS:
“Heterogeneous FDG uptake of the liver and spleen without focal hypermetabolic lesions. No nodular hypermetabolic focus along the gallbladder, pancreas, adrenal glands, or kidneys to suggest malignancy.”

“No pathologically enlarged hypermetabolic mesenteric or retroperitoneal lymph nodes. No focal hypermetabolic bowel thickening or evidence of obstruction.”

MUSCULOSKELETAL:
“Heterogeneous FDG uptake in the skeleton. No suspicious lytic or blastic osseous lesions. No hypermetabolic cutaneous lesions appreciated”.

Now. I don’t know what any of this means and i’m very confused. But. I’m being referred or transferred to an ENT specialist there at Mayo because of what they found from the PET Scan. I should be hearing from Scheduling sometime today to make that appointment. I’ll have to go in person, no more telehealth appointments, and i was told that they’re probably gonna want to put me through more tests to figure out what’s going on exactly.
They told me that they did not find a recurrence of the Melanoma, so that’s good and i’m happy to hear that. But. i don’t understand why this scan found these “uptakes” and the person i spoke with yesterday said they’re most concerned about my head, neck, and left tonsil. I’m kind of wondering if i should be seeing an oncologist just because of my history even if they didn’t find Melanoma specifically, but i’m not a doctor, so i’m hoping they know for sure that an ENT specialist can help with whatever’s going on.
I’m the one who pushed for me to have a PET Scan. These past few months of me being so sick, i had asked two different doctors (not affiliated with Mayo) for them to put me through a PET scan but they were both concerned that i wouldn’t be able to afford it so they refused to schedule me for one. I took matters into my own hands by asking my most recent/new doctor at Mayo for them to put me through one, and now they’ve found these “uptakes”. If it weren’t for me speaking up and pushing for this, i probably would’ve never had this scan. So because of that, because of the fact that i had to do the job of the doctors i’ve had these past few months..i want to trust Mayo completely because i have zero issues with them..but i’ve lost so much trust and faith in doctors these past few months (even if they’re not affiliated with Mayo). I’m just really hoping that i can figure out what exactly is going on and why i’ve been so sick, and preferably as soon as possible. I’m still trying my best to not fully worry because i don’t have any clear answers yet as to what’s going on, but if i’m being totally honest, i’m kind of scared. For me, PET Scans have always been the “cancer scan” because i had to do them back when i had the Melanoma when i was 17. I know that it detects other things and i shouldn’t jump to conclusions, but, it’s a little easier said than done with the kind of medical history that i have.
i’ll try my best to keep posting updates but i can’t promise anything because if at any point i find out that this is something serious, i’m gonna have a lot more in my life to focus on if you know what i mean.
And again, thank you to anyone who leaves a comment on here and i’m sorry if i don’t respond or if it takes me a while to respond..there’s just so much that i’m trying to process and work through right now. Lots of love to those of you who show genuine concern and care, it means more to me than you’ll ever know, even if we don’t know each other.
I’m not sure if it’s allowed for me to mention this on here, but i tend to post a lot of health updates on TikTok if anyone’s on that platform, and my username is notdefinedbyyou . If you comment on any of my posts on tiktok saying you’re from Mayo Connect, i’ll definitely follow you back.

Jump to this post

Kudos to you for pushing to get the diagnostic care you knew in your heart that you needed. For anyone out there never let anyone convince you that you shouldn’t pursue the answers you need for reasons of affordability or that it’s just too hard or complicated to get another test or expert opinion, if you are not entirely satisfied with the answer you are getting. You are clearly a strong person with a good instinct in evaluating the advice you were getting in relation to how you are feeling. I don’t understand the details of the PET scan report either but you are much further ahead in having something tangible in hand. Best of luck going forward.

REPLY
notdefinedbyyou | @notdefinedbyyou | Feb 10 8:25am

updates:
as i think i’ve mentioned before, it’s been really hard to keep track of everything lately so i might be repeating myself on some things but here is what has happened since i last commented on here.
I did a PET Scan and they found FDG uptakes in my head, neck, and left tonsil. I was referred to an ENT specialist & Internal Medicine at Mayo. I did my telehealth appointment with Internal Medicine and the doctor from that specialty is referring me to a few different doctors at Mayo plus she has ordered a few different tests. On Feb 16th i’ll be going to Mayo for blood work, the ENT consult, i have to pick up an Oximetry kit to do at home, and i also have to do a brain MRI. I also am needing to schedule an Audiology test (i’m guessing because i told the doctor about how i’ve been getting tinnitus a lot more often), and i also have to schedule 2 different allergy tests. The doctors she’s referring me to are a dermatologist, neurologist, the Allergist that i just did a telehealth appointment with yesterday that is wanting me to do the allergy tests, and i think there was one other doctor i’m being referred to but honestly i forgot which department/specialty it is. My GI at Mayo is the one that referred me to ENT and Internal Medicine. Also, i did a colonoscopy/endoscopy on Feb 7th. My doctor/surgeon told me she took 2 biopsies and i’m waiting for the results for that, she said my colon looks good, and she thinks i have a stomach infection so she prescribed me 2 medications for that. Not gonna lie, it kind of bothers me that she said she “thinks” i have a stomach infection. She made it seem like she’s not totally positive about that answer, as if it could maybe be something else. But again, as always, i’m trying my best to not worry until i know for a fact that i have something to worry about. I’m still not officially diagnosed with anything and i’m needing to do all of these tests and be seen by all of these different doctors. There’s so much that i want to vent about because i also have some personal issues that i’m dealing with in every day life along with all of this, but i feel like i’d be typing out a novel. I have a therapist that i see twice a month for 1 hour each session, which does help in the moment, but it would just be really cool if i wasn’t agoraphobic and could branch out into the world to make new friends that i could confide in like how i see from other people who can have friends to talk to..and yet my PTSD is holding me back as always. The only people in my life are my boyfriend, his family, and my own family. I feel like with all of these health issues and having to see all of these doctors and do all of these tests..i’m putting too much onto everyone around me even if i’m trying my hardest to keep a lot of it to myself out of respect and appreciation for them. It’s just..a lot. There’s a lot going on.

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 10 12:34pm
In reply to @notdefinedbyyou "updates: as i think i’ve mentioned before, it’s been really hard to keep track of everything..." + (show)
@notdefinedbyyou

updates:
as i think i’ve mentioned before, it’s been really hard to keep track of everything lately so i might be repeating myself on some things but here is what has happened since i last commented on here.
I did a PET Scan and they found FDG uptakes in my head, neck, and left tonsil. I was referred to an ENT specialist & Internal Medicine at Mayo. I did my telehealth appointment with Internal Medicine and the doctor from that specialty is referring me to a few different doctors at Mayo plus she has ordered a few different tests. On Feb 16th i’ll be going to Mayo for blood work, the ENT consult, i have to pick up an Oximetry kit to do at home, and i also have to do a brain MRI. I also am needing to schedule an Audiology test (i’m guessing because i told the doctor about how i’ve been getting tinnitus a lot more often), and i also have to schedule 2 different allergy tests. The doctors she’s referring me to are a dermatologist, neurologist, the Allergist that i just did a telehealth appointment with yesterday that is wanting me to do the allergy tests, and i think there was one other doctor i’m being referred to but honestly i forgot which department/specialty it is. My GI at Mayo is the one that referred me to ENT and Internal Medicine. Also, i did a colonoscopy/endoscopy on Feb 7th. My doctor/surgeon told me she took 2 biopsies and i’m waiting for the results for that, she said my colon looks good, and she thinks i have a stomach infection so she prescribed me 2 medications for that. Not gonna lie, it kind of bothers me that she said she “thinks” i have a stomach infection. She made it seem like she’s not totally positive about that answer, as if it could maybe be something else. But again, as always, i’m trying my best to not worry until i know for a fact that i have something to worry about. I’m still not officially diagnosed with anything and i’m needing to do all of these tests and be seen by all of these different doctors. There’s so much that i want to vent about because i also have some personal issues that i’m dealing with in every day life along with all of this, but i feel like i’d be typing out a novel. I have a therapist that i see twice a month for 1 hour each session, which does help in the moment, but it would just be really cool if i wasn’t agoraphobic and could branch out into the world to make new friends that i could confide in like how i see from other people who can have friends to talk to..and yet my PTSD is holding me back as always. The only people in my life are my boyfriend, his family, and my own family. I feel like with all of these health issues and having to see all of these doctors and do all of these tests..i’m putting too much onto everyone around me even if i’m trying my hardest to keep a lot of it to myself out of respect and appreciation for them. It’s just..a lot. There’s a lot going on.

Jump to this post

Hello @notdefinedbyyou! Thank you for the update. I know you’re so stressed out with everything that’s going on right now. But honestly, with this news of being seen at Mayo Clinic, I’m quite relieved for you! You are in the best possible care right and things are beginning to happen for you! Your doctors are finally listening, paying attention and trying to find answers that you’ve been struggling to find for years. You’re seeing the advantage of this outstanding clinic with how seamlessly you’re able to get appointments with all of these different specialists. They work collaboratively to find answers and to offer you hope!

My advice is to just try to go with the flow here…go to your appointments and try not to read too much into comments your doctor is making such as when your GI doctor says, “She thinks I have a stomach infection.”, it means just that. You had a colonoscopy, your colon was healthy…and that’s amazing considering the issues you’ve been having.
So your doctor is going from there…she’s looking for the next most likely cause. That’s why she gave you the two meds to try, to confirm or rule out an infection.

The at home oximetry test is super easy. It’s just a little clip monitor you put on your finger overnight. It attaches to a little device that goes around your wrist to record your oxygen level. You won’t even know it’s on there. I think you already went through the worst of these tests with having to prep for the colonoscopy, right?! 😉

Keep up with your therapy sessions. My feeling is that if you finally have a diagnosis and get treatment underway to help clear up some of these conditions you’re experiencing, you may make a breakthrough with your agoraphobia. You won’t feel so compressed and depressed mentally and may feel more like branching out!

You’re in good hands! I’ll be thinking of you on the 16th and wishing you all the best! And of course, I’d love another update. Hugs.

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notdefinedbyyou | @notdefinedbyyou | Feb 17 6:38am

update:
platelet count is high: 412.
monocytes are low: 0.23
cortisol AM is high: 23.
total iron binding capacity is high: 409.
ENT numbed my nose and scoped me to look at my tonsils, they said my tonsils look enlarged but normal for someone my age and they see no reason for biopsies or further evaluation..but the appointment with ENT was before my brain MRI.
MRI:
Mildly prominent diffusion-weighted signal within the upper cervical lymph nodes and lacrimal glands without pathologic enlargement or suspicious morphologic change.,
Suggest correlation with clinical and laboratory results to exclude occult hematologic malignancy.
Multiple small suboccipital and intraparotid lymph nodes and the lacrimal glands retain their normal morphology but appear atypically hyperintense on the diffusion-weighted sequences.
No pathologic enhancement.
Internal Medicine Note for the MRI:
No intracranial findings to explain headache. Continue with ENT evaluation regarding lymph node findings. No change in our current plan.
Leukemia/Lymphoma Immunopheno Blood test, note from Internal Medicine:
Reassuring flow cytometry, no abnormal findings for leukemia/lymphoma in the blood however this does not exclude
diseases confined to lymph nodes or not spread to blood stream. Continue with current evaluation.

Still no clear answers for why i’ve been sick for so long, still no official diagnosis/diagnoses.

Also, yesterday i got a call from my local GI’s office (not affiliated with Mayo). They want me to come in as soon as possible to discuss biopsy results from my colonoscopy/endoscopy. So i’ll be seeing my local GI this coming Monday (02/19/2024) at 9:30 AM to go over those results. I’m not sure why they couldn’t give me the results over the phone when they were previously able to give me test results over the phone regarding my stool samples. And i know that if there was nothing to discuss, if they did not find anything, then they could simply tell me that over the phone. So, i don’t know what i’ll be hearing on Monday and honestly i am a little nervous even though i’m still trying my best to hold onto “don’t worry until you know for a fact that it’s something to worry about”.

People in my every-day life are minimizing things and just because my ENT doctor cleared me before i did the MRI, before the MRI lymph node findings, they automatically believe that whatever i’m going through must be something not-so-serious even though it all feels pretty serious to me. I’m tired of having these symptoms and being sick for so long, but i’m especially tired of people looking at me as though i’m just a mentally ill disabled woman and so therefore maybe all of my physical symptoms are just from stress even though i’ve been feeling worse and worse as time goes on. I’ve been sick since October 2023 and none of what i’ve been going through is “normal” and i have a hard time believing that all of this is just from stress..these findings of my lymph nodes or the high and low blood work levels or the fact that my GI wants to see me as soon as possible, etc. But what do i know? it’s just my body. it’s just my health. it’s just me being so sick for nearly 5-6 months.

ugh. i don’t mean to sound rude or disrespectful to the people that i love and care for, the people in my everyday life. i just wish people could somehow truly see what i feel and understand why it hurts to be told by them that they think this could all just be from my mental health. and i know i’m not the only woman to ever experience something like this. a lot of women aren’t taken seriously when it comes to their physical health and it’s so sad.

it’s not like i want bad news. it’s not like i want a bad diagnosis. i just want factual answers, and for my loved ones to not make assumptions based off of my mental health rather than the laundry list of physical symptoms that have been impacting my every day life. hopefully that makes sense..

REPLY
1 reply
gisellef | @gisellef | Feb 17 9:25am
In reply to @notdefinedbyyou "update: platelet count is high: 412. monocytes are low: 0.23 cortisol AM is high: 23. total..." + (show)
@notdefinedbyyou

update:
platelet count is high: 412.
monocytes are low: 0.23
cortisol AM is high: 23.
total iron binding capacity is high: 409.
ENT numbed my nose and scoped me to look at my tonsils, they said my tonsils look enlarged but normal for someone my age and they see no reason for biopsies or further evaluation..but the appointment with ENT was before my brain MRI.
MRI:
Mildly prominent diffusion-weighted signal within the upper cervical lymph nodes and lacrimal glands without pathologic enlargement or suspicious morphologic change.,
Suggest correlation with clinical and laboratory results to exclude occult hematologic malignancy.
Multiple small suboccipital and intraparotid lymph nodes and the lacrimal glands retain their normal morphology but appear atypically hyperintense on the diffusion-weighted sequences.
No pathologic enhancement.
Internal Medicine Note for the MRI:
No intracranial findings to explain headache. Continue with ENT evaluation regarding lymph node findings. No change in our current plan.
Leukemia/Lymphoma Immunopheno Blood test, note from Internal Medicine:
Reassuring flow cytometry, no abnormal findings for leukemia/lymphoma in the blood however this does not exclude
diseases confined to lymph nodes or not spread to blood stream. Continue with current evaluation.

Still no clear answers for why i’ve been sick for so long, still no official diagnosis/diagnoses.

Also, yesterday i got a call from my local GI’s office (not affiliated with Mayo). They want me to come in as soon as possible to discuss biopsy results from my colonoscopy/endoscopy. So i’ll be seeing my local GI this coming Monday (02/19/2024) at 9:30 AM to go over those results. I’m not sure why they couldn’t give me the results over the phone when they were previously able to give me test results over the phone regarding my stool samples. And i know that if there was nothing to discuss, if they did not find anything, then they could simply tell me that over the phone. So, i don’t know what i’ll be hearing on Monday and honestly i am a little nervous even though i’m still trying my best to hold onto “don’t worry until you know for a fact that it’s something to worry about”.

People in my every-day life are minimizing things and just because my ENT doctor cleared me before i did the MRI, before the MRI lymph node findings, they automatically believe that whatever i’m going through must be something not-so-serious even though it all feels pretty serious to me. I’m tired of having these symptoms and being sick for so long, but i’m especially tired of people looking at me as though i’m just a mentally ill disabled woman and so therefore maybe all of my physical symptoms are just from stress even though i’ve been feeling worse and worse as time goes on. I’ve been sick since October 2023 and none of what i’ve been going through is “normal” and i have a hard time believing that all of this is just from stress..these findings of my lymph nodes or the high and low blood work levels or the fact that my GI wants to see me as soon as possible, etc. But what do i know? it’s just my body. it’s just my health. it’s just me being so sick for nearly 5-6 months.

ugh. i don’t mean to sound rude or disrespectful to the people that i love and care for, the people in my everyday life. i just wish people could somehow truly see what i feel and understand why it hurts to be told by them that they think this could all just be from my mental health. and i know i’m not the only woman to ever experience something like this. a lot of women aren’t taken seriously when it comes to their physical health and it’s so sad.

it’s not like i want bad news. it’s not like i want a bad diagnosis. i just want factual answers, and for my loved ones to not make assumptions based off of my mental health rather than the laundry list of physical symptoms that have been impacting my every day life. hopefully that makes sense..

Jump to this post

It sounds as though you still have a lot going on physically that is making you unwell. I think stress can aggravate something that is very real and also contribute to making the source or sources of your condition less clear. That may account for your dear ones responding to you as they have. We can definitely amplify a real problem or concern through stressing out. On the other hand I truly believe that our body is also physically capable of generating odd signals such that the symptoms are atypical of the problem at hand.
Hope you get good news at your next meeting and answers soon regarding your overall health. One thought just came to mind. Have you had a blood test to rule out an autoimmune disorder? Maybe something to consider if your results come back negative.

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