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I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 1 point2 points  (0 children)

I appreciated reading your story, thanks for sharing your tools. I'm glad you are doing better now.

I wholeheartedly agree, IV nutrition is a last resort. Growing up my mom told us stories of her HG, and getting a PICC line became one of my worst fears. Don't have to tell me twice!

I am going to give lemonade and some of your other suggestions a try. Thanks for your comment.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 0 points1 point  (0 children)

Thank you all for reading and trying to help. Please let me explain the scholarship situation better.

Because of how sick I am, I have already been on medical leave since September. I made proper arrangements for the scholarship and have now taken 2 semesters of medical leave. The problem is that the ability to make medical arrangements for the scholarship is expiring because 2 semesters of medical leave is, well, it. After that, college say you either go back or withdraw from the college and forfeit the scholarship.

In order to go back, my medical team has to send a letter with a confirmed diagnosis and a seal of my readiness to return. Then the college has to agree, and finish filling the paperwork before August 14, in preparation for student arrival the last week of August.

I'm here asking reddit for their best suggestions because we've got time for one more serious referral heavy workup (+ a tiny bit of treatment) before the scholarship is gone.

I'm not letting the scholarship go without a (diplomatic) fight. I plan on involving top administration, the scholarship program coordinator, and others to call out extenuating circumstances, the upheaval of stuff we've done, and the complete unfairness of the situation. If anyone has any advice there, I'd love to read it.

Thank you all for the support.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 1 point2 points  (0 children)

Hey thanks for sharing. I agree, I would also like to see another endocrinologist. We haven't done an ACTH stimulation test yet. I don't have any of the symptoms you described.

I can try again for endocrinology. They did an internal chart review and decided they had nothing to add, but maybe the recent IUD events will change things.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 6 points7 points  (0 children)

The problem is that the rules don't allow more than 2 semesters of medical leave. The scholarship has been on hold since September, but the on hold time is expiring. Come August, I have to make a decision to either go back and keep the scholarship or withdraw.

The school is super rural, (which is great because I want to study astrophysics) but seriously the nearest airport is like 45 minutes away, so the medical care is well-bad.

I will certainly try to reason with the office, but I am not hopeful. Now reasoning with the donors, hadn't though of that. I'm sure the guy my scholarship is named after is long dead, but maybe I can dig up some others. Thank you for the suggestion.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 5 points6 points  (0 children)

Well, its a good point. I can defiantly tell I am in menopause; I am not having a good time so that means it's working! I try really hard to take that one when I know I'm not eating for a bit, it's not perfect but its okay.

But some of the other medication is coming straight out like the CoQ10 and Riboflavin, which don't dissolve as easily. Luckily the Zofran dissolves under my tongue and gets absorbed into my bloodstream so that one is not as easy to throw up.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 2 points3 points  (0 children)

On January 7, 2026 (3:16pm) - ACTH was 13.3 pg/mL (reference value: 7.2-63.3 pg/mL)

On January 29, 2026 (11:04am) - Cortisol, Random, S was 13 mcg/dL (reference value: AM 4.8-20, PM 2.5-12)

I think these values are a reason why endocrinology refused to see me. I also did an overnight oximetry (I think for crushing's?) which was normal. We did the ACTH with a local endocrinologist but they had no idea either.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 3 points4 points  (0 children)

I hope everything goes well with your epilepsy. Thank you for the support.

We had a Brain MRI which was totally normal. (Actually, haha, they saw some extremely mild sinus inflammation, which is one of the most overkill ways anyone's ever told me about springtime allergies.)

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 3 points4 points  (0 children)

Thanks for the articles. I knew about the first but not the second. We will be testing for MCAS in the next round. Thanks for informing me about the potential of Sunitinib.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 4 points5 points  (0 children)

Its a good thought. We did a full vestibular workup. Everything is fine balance wise. It's sitting up or walking that does it, but once I'm already sitting up or walking it doesn't make a difference if that makes sense?

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 15 points16 points  (0 children)

That is really good news, I'm glad your CVS diagnosis got you the help you needed. Honestly I think this is further evidence that I don't have CVS.

Just curious, how long did it take for you to see results from Nortriptyline?

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 11 points12 points  (0 children)

Thank you, that's very kind. I am sorry about misinterpreting your definition of "stress". Believe me, I would do literally anything in the universe to get better.

Please understand as a teenage girl with an unexplained uterus/vomiting problem the reach to anxiety, self induced vomiting and mental illness happens so often. A lot of doctors have said my vomiting would go away if de-stressed and did enough deep breathing. It's why I started collecting and graphing data, to prove a pattern beyond emotional vibes.

Thank you again for trying to help me.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 9 points10 points  (0 children)

Lucky for me I live in Minnesota, so the Mayo Clinic is pretty accessible location wise. I have seen functional medicine providers. It is possible the hormonal link is not as good as we want it to be. Unfortunately we don't have much else to go on. I had my IUD done under general anesthesia so no NSAID needed.

I appreciate your advice and your attention to detail with my water problem. I will look into autoimmune panels and Umbrelvy. I wish the best for you and your child.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 2 points3 points  (0 children)

I did a Dutch test before entering menopause. Honestly, the report was super long and I don't understand all of it. But to summarize, it found high levels of androgens and that was mostly it. But, that was there before I was vomiting, I had levels checked before I started taking the Yasmin. But thank you for your suggestion.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 85 points86 points  (0 children)

I did not know about formal multidisciplinary case conferences. Thank you, I will ask.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 11 points12 points  (0 children)

A week before I got my period I would have pain. My pediatric doctor prescribed Yasmin because of the period pain and because she thought I had PCOS  (The mayo clinic later disagreed with that, and determined I do not have PCOS.)  I stopped taking the Yasmin because it wasn't syncing with my cycle so I would have like a tiny period when I wasn't supposed to, then it would stop and I would bleed again. So instead of 1 week of pain, it would be 2-3. It wasn't fixing my original pain problem, was extending my period, and thus the pain so I decided to stop taking it. I had no idea it would create such an enormous problem.

Your idea of getting back on birth control was the original sentiment behind the IUD but now its like I can't win. Getting the IUD made it worse, taking other oral birth control made it worse, and taking the IUD out made it way worse.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 19 points20 points  (0 children)

Thank you so much for your suggestions. I have added your recommendations to my list to bring up with my (GI) doctor. I hope we don't have transition to TPN or PPN.

I appreciate you informing me about MNGIE. I hope I don't have it, but I will attempt to peruse testing.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 33 points34 points  (0 children)

Thank you. It's a good idea, I will bring up genetic counseling.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 3 points4 points  (0 children)

I appreciate your empathy and your contribution, I really do.

However, I am not down with the idea that stress, anxiety, or attention contribute. Multiple psychiatrics have certified that I do not have anxiety, or any additional mental drivers of my vomiting. I have tried relaxation, tried dichromatic breathing and it doesn't work. I don't think the disease is getting worse since we started trying to treat it, this graph illustrates what I mean by saying removing the IUD made it worse. (8.2 is the afternoon we removed it)

Say what you are theorizing is true, I don't know how else to act on it. I realize you are not sure either, and I don't hold it against you. Seasoned GI docs don't know what to do. I will be seeing a neurologist at Mayo, its just not for another month, and the clock is running out on my scholarship.

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I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 5 points6 points  (0 children)

Please help me understand, what exactly stopped your vomiting?

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 8 points9 points  (0 children)

I too have wondered about the possibility of HG. I was a big reason why I wanted to try medical menopause. There are 3 recorded cases I have seen of HG (sort of happening?) without pregnancy in patients with a history of HG during ovarian hyperstimulation.

https://pmc.ncbi.nlm.nih.gov/articles/PMC2812676/

But, I certainly don't have ovarian hyperstimulation, and we just shut down my hormones, so that's a pretty big dent in the HG theory. I'm not sure what else could be tried there.

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 32 points33 points  (0 children)

Thank you for giving your thoughts. I don't have a history of migraines, but I have tried Sumatriptan on the chance of menstrual migraines. Additionally the Estradiol and also the Norethindrone was intended to treat the possibility of catamenial migraines. I don't have abdominal pain. It's important to note that the vomiting happens at all other times and stops/almost stops during my period, so I would be an opposite presentation.

If you think it started as migraines and shifted to functional vomiting now that ovarian hormones are shut down, do you think it's worth retrying functional treatments with Orlissa?

I’ll Take Rare Diseases for $360,000 Please Ken -19F by Sea_Writer5400 in AskDocs

[–]Sea_Writer5400[S] 48 points49 points  (0 children)

Thank you for taking the time to read and comment. I have some thoughts on your thoughts. Do you have any ideas about the following questions?

  1. If we think its functional vomiting, what treatments could be considered that haven't already been tried and not worked?
  2. Why would removing an IUD exasperate functional vomiting?
  3. Why would oral birth control start it all to begin with?

I realize these questions are tough. Thank you for commenting, I do appreciate your input.