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Sick daughter goes undiagnosed

Posted by ghennel @ghennel, Nov 15, 2019

My 26 year old daughter has had on going health problems since her teens. She has been from doctor to doctor and no once can seem to pinpoint what is wrong with her. She weights 89 lbs, can't gain weight, has chronic pain in her abdominal area and a small mass that can be felt. She has had 4 MRI's which found nothing. She lives in Arizona and was in the Scottsdale Mayo ER, they thought it was an ovary or endometriosis and they did an ultrasound, blood work and pelvic exam. Found nothing, sent her home but told her to come back if things got worse. They never get better. I wish they would have looked further to see what the problem really is if it isn't female issues. She is so slim you can feel there is something going on, a mass. She also gets chronic inflammation in her rib cage on one side, on and off. No one can explain that either. Her blood work shows she produces very little progesterone. No one really has done anything to address that. Her diet is very limited because she gets ill very easily. She gets night sweats that soak her sheets just about daily. She runs low grade fevers frequently. She has had many tests done over the years, and while things may come back "slightly" off, no one has a diagnosis or explanation for why she is chronically sick. The chronic pain is affecting her mental state as well. She can barely function enough to keep a part time job. Her income level is low so she could never pay out of pocket to get diagnosed by Mayo. Her government insurance policy that she pays for doesn't want to approve many tests or specialists. Even when they do, they are mediocre and all they want to do is give her pain meds and anti nausea. She does not take the pain meds and the anti nausea just provides a bit of relief. She needs a diagnosis, not meds that cover up symptoms. What is causing all of this? I wish she could afford to go to Mayo to at least get a diagnosis. She is deteriorating and no one helps her. We do not know what to do. I am her mother and I live in Wisconsin and do what I can to help her keep afloat. At 89 lbs she is frail and dragging herself through her days not living life. I am scared for her. I wish I could find her some help.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 19, 2019
In reply to @ghennel "Ethan, Thank you for the additional groups. I will definitely try posting there. My daughter, Shannon,..." + (show)
@ghennel

Ethan,
Thank you for the additional groups. I will definitely try posting there.

My daughter, Shannon, has been given some diet guidance and it has helped a bit. She is unable to put weight on and keep it on. She has had 4 CAT scans, an MRI, endoscopy, ultrasounds,loads of blood work and more ER visits than I can count over the years. When they can't pinpoint anything specific they prescribe an anti nausea and pain medications and send her on her way. She opts not to go down the path of pain medication reliance and the pain meds end up causing digestive upset anyways. They know something is off, but no one has dug far enough to figure out where this is all coming from. This started in her teens.

As far as I go, I worry about her every day and am constantly on the search for answers. It makes no sense to me how so many doctors know something is wrong, but no one goes the extra mile to figure it out. It has to be something outside the normal list of disorders. Part of the problem is insurance as well and the limit of quality care she can actually seek out. She is barely holding a part time job because she is exhausted and tells me that she thinks she is just going to feel like garbage her entire life. She is starting to give up hope she will ever be helped. She is 26, I can't accept that for her. So am I okay? No, not really. I am sad that I as her mother, can't fix this for her or at the very least get some answers so she can manage her health problems. It is hard to manage an illness when you don't know what it is.

Thank you for your time,
Ghennel

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@ghennel It must be so difficult for you. Has your daughter looked on the internet for a mutisystem doctor in her area? We have 1 in Denver. I’ve not seen her but I know she specializes in strange diseases. Will you ask your daughter to give her a call? Becky

REPLY
1 reply
JK | @contentandwell | Nov 19, 2019
In reply to @ghennel "Hello, she is on an ACA policy and it does not cover anything at Mayo. We..." + (show)
@ghennel

Hello, she is on an ACA policy and it does not cover anything at Mayo. We actually spoke to the insurance company as well as someone from billing at Mayo and they confirmed that. She is going to try to see if she would qualify for financial assistance at Mayo. They do have a program she can apply to. Right now she only works part time because of her health problems so I think her income level would certainly be low enough. I agree, she needs an exceptional diagnostician. Hopefully she can qualify for help at Mayo, because she really doesn't have any other options at this point. The amount of doctors she has seen is unbelievable. We know what she doesn't have! She was in the ER earlier this week. She is considering going back again to see if maybe some other tests could be run. The ones they ran ruled out ovarian cysts and endometriosis which is what a different doctor she had been seeing thought was the problem, as well as the ER doctor who treated her. Once they ruled that out, she was sent home with anti nausea and pain medication. She was hoping for some sort of answer. They suggested a GI doctor. She saw two from her current insurance and they didn't really listen to her nor did they want to run any new tests. One told her that the "so called" surgery she had when she was a teenager would never have been done laparoscopic. He didn't listen to anything she said. Her insurance did not want to approve more GI consults. So here we are.

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@ghennel here is a link from US News and World Reports for the best regional hospitals in AZ. Maybe if Mayo does not come through for her one of these hospitals could. Mayo is the only hospital in AZ with a National rating. I hope that Mayo does come through though, I think they are the best available for something as complex as what your daughter is going through.
https://health.usnews.com/best-hospitals/area/az
JK

REPLY
ghennel | @ghennel | Nov 20, 2019

Thank you. It is always good to have some backup options. Praying Mayo works out for her.

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ghennel | @ghennel | Nov 20, 2019
In reply to @becsbuddy "@ghennel It must be so difficult for you. Has your daughter looked on the internet for..." + (show)
@becsbuddy

@ghennel It must be so difficult for you. Has your daughter looked on the internet for a mutisystem doctor in her area? We have 1 in Denver. I’ve not seen her but I know she specializes in strange diseases. Will you ask your daughter to give her a call? Becky

Jump to this post

I will have Shannon give her a call. She is at the point we have to figure something out. She is having more bad days than good days. Thank you!

REPLY
januaryjane | @januaryjane | Nov 22, 2019

Hi, I posted a reply on my post. So sorry your daughter is going through this. Has she had a colonoscopy? Checked her thyroid, thoroughly? Could the mass be an enlarged lymph node? I have low-grade fevers on and off, relentless. I started having inflammation on my face and ears, which sparked all the autoimmune stuff, thinking I might have lupus. I dont, but found out that "rashes" or inflammation, was part of the ebv virus. I cant go to mayo either. I too find doctors dismiss me before they even talk to me.

REPLY
1 reply
januaryjane | @januaryjane | Nov 22, 2019

For the fevers I keep popsicles in the fridge. I also buy those little reusable ice packs and put one under my neck at night when Im flaring. I was told by my dr to drink carnation instant breakfast and it does help with energy, but do the skim milk.

REPLY
ghennel | @ghennel | Nov 22, 2019

Thank you for the tips. My daughter is lactose intolerant, but I am sure she could find an alternative. They had her doing high calorie shakes for a while to try to help her put and keep weight on.

REPLY
ghennel | @ghennel | Nov 22, 2019
In reply to @januaryjane "Hi, I posted a reply on my post. So sorry your daughter is going through this...." + (show)
@januaryjane

Hi, I posted a reply on my post. So sorry your daughter is going through this. Has she had a colonoscopy? Checked her thyroid, thoroughly? Could the mass be an enlarged lymph node? I have low-grade fevers on and off, relentless. I started having inflammation on my face and ears, which sparked all the autoimmune stuff, thinking I might have lupus. I dont, but found out that "rashes" or inflammation, was part of the ebv virus. I cant go to mayo either. I too find doctors dismiss me before they even talk to me.

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She did have her thyroid checked thoroughly. It was slightly off, however she is not producing progesterone. They are trying to address that and think if they can get her hormone levels corrected it may help correct the thyroid. It very well could be an enlarged lymph node, it comes and goes when she is having a "flare up". No one will check into it far enough to really find out what is going on. They all feel it, I can feel it, then it gets dismissed. Lupus was checked off the list, so she isn't dealing with that. I do believe it is autoimmune due to the fact she goes through flare ups. She feels very dismissed and ignored by the health professionals she has seen. It will take an outstanding facility and set of doctors to diagnose her. Too bad great health care is only for the wealthy these days.

REPLY
2 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 24, 2019
In reply to @ghennel "Ethan, Thank you for the additional groups. I will definitely try posting there. My daughter, Shannon,..." + (show)
@ghennel

Ethan,
Thank you for the additional groups. I will definitely try posting there.

My daughter, Shannon, has been given some diet guidance and it has helped a bit. She is unable to put weight on and keep it on. She has had 4 CAT scans, an MRI, endoscopy, ultrasounds,loads of blood work and more ER visits than I can count over the years. When they can't pinpoint anything specific they prescribe an anti nausea and pain medications and send her on her way. She opts not to go down the path of pain medication reliance and the pain meds end up causing digestive upset anyways. They know something is off, but no one has dug far enough to figure out where this is all coming from. This started in her teens.

As far as I go, I worry about her every day and am constantly on the search for answers. It makes no sense to me how so many doctors know something is wrong, but no one goes the extra mile to figure it out. It has to be something outside the normal list of disorders. Part of the problem is insurance as well and the limit of quality care she can actually seek out. She is barely holding a part time job because she is exhausted and tells me that she thinks she is just going to feel like garbage her entire life. She is starting to give up hope she will ever be helped. She is 26, I can't accept that for her. So am I okay? No, not really. I am sad that I as her mother, can't fix this for her or at the very least get some answers so she can manage her health problems. It is hard to manage an illness when you don't know what it is.

Thank you for your time,
Ghennel

Jump to this post

@ghennel - I just read about your daughter’s misery. I’m so sorry. I know exactly what you are going through. I have a daughter that lived with an undiagnosed illness for years. My first thought- low producing progesterone- why? Endocrinology explanation? Her abdominal pain , mass felt and poor weight gain reminds me of a young teenage girl I got to know. Turns out she suffered from extreme chronic constipation for years. Her growth was slow, compared to her twin sister as well. The mass felt was a large stool mass. With help of pediatric gastroenterologists this was eventually resolved, appetite returned and she caught up in growth. I noticed you mentioned endoscopic examination but not colonoscopy. Was that done? What are her bathroom habits?

REPLY
ghennel | @ghennel | Nov 25, 2019

My daughter did suffer from extreme constipation for years as well. A GI doctor tried to help her and the medications they prescribed did not work and she could not tolerate them. She went to a natural path who helped her with diet, colonics and supplements. Now that she is "cleaned out", she is suffering from frequent bouts of diarrhea. My question is why does she have these digestive problems in the first place? As a teen she had lymphatic malformations in her small intestines that were surgically removed. From what I understand that is caused by a malformed lymphatic system. It was suggested to us through these boards based on her past and the info I gave to see if she may have mesenteric panniculitis. Her symptoms and past sound just like what she has been going through. The mass could be a lymph flare up that comes and goes, which may explain why it is hard to find on her scans. It took them 2 years to find the lymphatic malformations and it was an intern who would not accept that they found nothing, that spent hours of his own time going through her tests and scans. It was barely visible. As for an endoscope, the prep process never worked enough where they could do one in the past. She may be able to get through one now, but no one has ordered one. We have no idea if her hormone problems could be related to the digestive problems or not, because the doctors she has seen do not communicate. Her digestion has been so bad for so long she does not absorb nutrients properly which I am sure is not helping the rest of her body work properly. Shannon has an appetite, but many times when she eats she feels lousy, gets bloated to the point she looks pregnant, suffers from nausea, has abdominal pain and then many times it goes right through her. She supplements her diet with high calorie shakes to try to keep weight on. Your "why" questions....are the same questions we have been spending years trying to find the answers to. I wish we could find a doctor to run the proper tests to see if mesenteric panniculitis could be what she has. It is supposed to be rare and hard to diagnose. My family has a strong history of auto-immune problems and inflammatory issues. It has been so frustrating. Thank you for reaching out.

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