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Denise (Jeff’s Mom), Undiagnosed Bio

October 13, 2026

MaryO Male, Undiagnosed , , , , , , , , , , , , , , , , , 2 Comments

My son is almost 16 years old and so sick he hardly gets out of bed anymore.  Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more.  My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him.  He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless.  He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range.  I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.

His symptoms are as follows and the explained away answers from the Dr.s –

1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around.  Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired.  He told me it’s like his mind sleeps but his body doesn’t feel rested at all.  Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6.  He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly

I am sure there are other things but these are the first to come to the top of my head.  His biggest complaint is the memory loss, lack of sleep and pain.  I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old.  I am watching him get worse and watching his precious teenage years just pass right by him.

Contact Denise here.

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Elizabeth (ToxicNudibranch), PCOS Bio

October 9, 2026

MaryO Cyclic, Other Diagnosis, PCOS, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , Leave a comment

This has been a difficult road to even get to a tentative diagnosis, and I know it’s going to be even more difficult going forward, but it’s better than nothing, eh?

I was a pretty healthy kid. I didn’t eat that well, I wasn’t that active, but I was always strong and fairly lean. When I was 19 that all changed. I’m 27 now, and have just barely found an Endo who was willing to order the obvious tests for my obvious signs. It’s been frustrating. To wit:

*2006 I move to the dorms and put on what I assume are the Freshman 25 within the first semester, even though I’m much more active and eating markedly more healthfully than I was ever raised to. 190lbs
*2007-2008 Job prospects are not great, so I’m dead broke. I end up leaving college for the time being. I’m walking everywhere since I can’t afford a car and public transport is not adequate, and eating less than I should. Weight stabilizes at 195lbs
*2009-2012 I’m not eating much more, just better (lean meats and leafy veg instead of rice and beans for every damn meal!), but my weight starts piling on again (30 in 2 months). I begin experiencing migraines, marked fatigue, and anxiety. Fat settles entirely around middle. Face still relatively normal. Continue moderate gains thru weight watchers, south beach, Atkins, etc. Bring concern to PCP, where I am accused of mis-stating caloric intake and asked to track food. I do, and on my follow-up appointment, my PCP just looks at me like I’m lying and and offers stimulant diet pills. I decline. Hirsuitism increases, as does fatigue. OBGYN diagnoses PCOS, I start Metformin 500mg/2x No reduction in weight. 220lbs
*9/2012 I put on another 15lb in 4-5 weeks. Face is getting fatter, gut sticks out like a basketball. I know something is very wrong, and by this point I’ve heard something about Cushing’s and thought “Hey, that looks exactly like me.” I go to see my first Endo. He notes that I have the hump, torsal weight gain, hirsuitism, weak limbs, easy bruising, anxiety, etc. Mild striae. I even show him pictures of myself from 6 months ago. The change in my appearance is enormous. He waves those away and runs a single midnight cortisol (inconclusive) and an8am dex test (kinda supressed) and says that I’m just fat because I’m clearly stuffing myself with chocolate cake on the sly and totally lying about the 5-8 miles *a day* that I’m running by this point. He recommends a more restrictive diet or gastric bypass. And did he mention that he just happens to be able to provide me a referral to a good colleague of his that runs a whole surgical center that will throw in some laser hair removal with Lapband? Asshole. I feel degraded and helpless. 235lbs
*10/2012-5/2013 Continued migraines, increasing sinus pressure and constant sinus infections, eyes very irritated. PCP blames allergies and stress. Could be migraines, could be cluster headaches. I take at least 1600mg of Ibuprophen daily. I can’t run anymore because my ankles and knees are hurting pretty badly, but I start swimming again. Continued creeping weight gain despite increased exercise. 240lbs
*6/2013-10/2013 Migraines increase. Mis-diagnosed with multiple sinus infections. (5/28/13, 6/19/13, 7/2/13, 9/10/13, 10/18/13) The sinus pressure and pain never seem to get any better, so I go see an ENT. He says we may have to roto-rooter my sinus cavity to correct the constant inflamation. However, once he reviews my CAT Scan, he says I have only the mildest of swelling in my sinuses. Whatever it is, it’s not my sinuses.
*11/2013-4/2014 I develop double vision, my right eye stops tracking with my left, both eyes are bugging out (exoplthalmos). ER doctor and Opthamologist diagnose it as Thyroid Eye Disease/Graves. I have no symptoms of hyperthyroidism/Graves, (TSH, Thyroid antibodies all negative/normal) but my main concern is regaining sight, and the course of treatment is the same, regardless. First course of Prednisone. Rapid weight gain of roughly 20 over 3 months. I track and weigh my food obsessively, averaging 1400kc/day, which should be resulting in steady weight loss. In addition to smimming, I adjust my commute so I walk instead of drive and am doing body-weight yoga. Strength is a fraction of what it used to be. My striae get worse, as does my torsal fat distribution, hirsuitism, fatigue, hair loss, hump, mental fogging, etc.  I’ve stopped wearing pants and moved entirely to dresses. 260lbs
*5/2014 I’ve been weaned off Prednisone entirely. My eyes look normal again. I’m still eating well, but I feel so badly and I’m so tired that I can’t exercise much anymore. My heart starts pounding from relatively mild activity. I’m not experiencing migraines anymore, but I just plain don’t feel good. My moon face gets even worse. Everything gets even worse, actually. My weight is the same, but I can’t lean my head back because of the buffalo hump and I can’t even properly snuggle with my fiance because I’m feeling choked by the massive beer cozy o’ fat that surrounds my neck.
*6/2014 My eyes are swelling again. Thyroid levels still normal and I don’t have any markers for Graves specific antibodies. We begin 2nd course of Prednisone.
*8/2014 I’m off Prednisone again. I know something is very wrong. I go to another Endo, Dr. Knecht, who actually listens. He reviews my medical history, looks at my clear physical symptoms, and orders a crapload of labs. The results are pretty clear. It’s Cushings. He thinks there’s a good chance it’s cyclical. Now we start in to determine exactly what kind we’re dealing with.  It’s very likely that all the things I’d been suffering from (the PCOS, the pain/pressure that turned into exoplthalmos, anxiety, migraines) have been directly related to this condition. In Dr. Knecht’s office, I cry from relief. When I get home and tell my partner, I cry because I’m kinda scared.

And then I found you guys. And now I’m really scared. Hopeful, still, but terrified. Because the clinical, dispassionate descriptions about the surgeries that may be needed to “cure” (or at least knock into remission) Cushing’s are very different than yearing about the actual day to day experiences of living with a messed up or woefully inadequate adrenal/endocrine system. I’m confident I’ll get through it, but damn. This is going to be really hard.

I will update more as we get more conclusive answers and I begin treatment.

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Voices from the Past: Margaret S (Maggierose), Possible Adrenal Bio

October 1, 2026

MaryO Adrenal, Diabetes, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , Leave a comment

undiagnosed 5

Hi

I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.

I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.

I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.

My symptoms are as follows.

Sweating mainly evening time around 9pm

Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.

Changes in face. When I look in mirror I often think this does not look like me.

I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.

I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.

Some things I can maybe put down to age.

I would appreciate any comments from members. I will let you know when I get results.

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Shannon, Pituitary Bi0

September 30, 2026

MaryO Golden Oldies, PCOS, Pituitary , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

A Golden Oldie

The pituitary gland

The pituitary gland

I’m 31 years old and feel like I’m 80.  I’ve been ill for so many different things over the past couple of years.

In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why.  I still have vision disturbances but after two med packs of steriods the double vision went away.

I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see.  To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.

He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.

If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.

Here’s a list of my symptoms:

-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention

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Téra (HappyGirl), Video Bio

September 25, 2026

MaryO Cyclic, Video , , , , , , , , , , , , , , Leave a comment

Téra is a member of the message boards – you can respond to her posts here.

Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there’s some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, “if one more doctor dismisses me, I am ending my life! I can’t live like this anymore!” These are very important things to remember.

1. Not every person has all the symptoms especially mild Cushings but we are still just as miserable.

2. Mild episodic Cushings may not show as elevated cortisol on UFC or midnight salivas. We have lots of lows & some highs that are sometimes difficult to determine because it could be just a few hours of high cortisol in a day & the rest normal or low.

3. There are tests like the 17-OHS that can show abnormal cortisol levels & should always be done on the same 24HR UFC urine.

4. Don’t blow off someone by just doing a low dose dex suppress, that test is ONLY TO SHOW LOCATION OF THE TUMOR! If you suppress, then it points to pituitary, if you don’t it points to adrenal.

5. A Buffalo hump means Cushings more often than it means just a normal fat pad due to a persons fat distribution!

6. Put down the mouse & step away from the computer & examine me!

7. Actively Listen to what I am saying to you!

8. Morning cortisol serums are usually useless because mild episodic Cushings patients trend to be in a normal or low during the morning & mildly to moderate high in the late evening to early morning hours.

9. A midnight cortisol serum is very helpful to determine if the patient has Cushings, IF they are showing symptoms of being on a high.

10. Multiple testing is needed to rule out Cushings. Stop dismissing Cushings as a diagnosis with only one round or even four rounds of tests!

11. These patients are looking to you for help in a very scary time, stop giving the exercise, meditation speech! It only is an insult to us. Most Cushings patients actually don’t eat enough calories & restrict trying desperately to loose weight.

12. Mild episodic Cushings patients can loose weight so don’t disregard if they do because it will come back on even with no change to activity levels & caloric intake.

13. It should Not take 3 years or longer to get a diagnosis of Cushing’s!

14. It should NOT take 4 + endocrinologists pushing off to the next & the next to get a Cushings diagnosis!

15. Stop immediately assuming we have PCOS! Test for it before you pigeon hole a patient! And realize you can have both PCOS and Cushing’s.

16. Stop tossing pills at each individual symptom, look at all the symptoms as a whole. When dealing with Cushings, the only true reverse of the symptoms is surgery.

Part 2

In addition to the 16 items above, she added:

17. You can have normal ACTH levels and still have Cushing’s. “Patients with ACTH-secreting tumors will either have a normal or elevated level of ACTH.” – Dr. Findling Dr. Findling is an endocrinologist and Professor of Medicine at the Medical College of Wisconsin. Dr. Findling has been dedicated to the clinical evaluation and care of patients with Cushing’s syndrome for over thirty years. He has over 100 publications and was a co-author of the Endocrine Society guidelines for the diagnosis of Cushing’s syndrome.

Part 4, September 25, 2021

This is just a quick update. I am not in a good head space. Being denied a much needed surgery because of irresponsible people are not following cdc guidelines, makes me very very very very upset!

Every day a new issue pops up, IIH could make me go blind, my bones could break, my muscles are weak, my mental health is poor, my heart is enlarged, my brain is in atrophy!!!

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Sylvia, Undiagnosed Bio

September 24, 2026

MaryO Golden Oldies, Undiagnosed , , , , , , , , , Leave a comment

A Golden Oldie

Sylvia submitted two versions of her bio:

1)

Hi , my name is Sylvia. I’m a 36 years old mother of two.

I am not one to go to doctors. Usually I go about every 4 or 5 years. I last went to a doctor in 2008 and had a battery of test. To this day the only dx i got was anemia. I had lab,ct,mri,lumbar puncture, and other tests with no answers.

Recently I went to an urgent care due to feeling bad. Thought i had a kidney infection. Had trouble urinating, feet swelled up, and burning in my sides. They told me I had high blood pressure no kidney infection. Also my lab came back high whiteblood count. I’ve never had high bp but elevated white blood counts for several years. Every time I have lab its high. They had me repeat the lab 2 days later and it was higher. So then i did a 24 hr urine test and my creatine level was high.

So they sent me to a kidney specialist now he is  wanting to rule out cushings. I had never even heard of it before, I went today for a renal ultrasound and in 3 weeks i will do a 24 hr urine cortisol test. Then i will see him the next week.  so 1 month till I hear anything.

Let me just give you my history of symptoms:  elevated white blood counts when i have no cold or infection  recent high blood pressure  swelling in feet, legs, face, and hands gained 50lbs this year  have battled weight for years unable to lose more than 30lbs ever and that is with extreme diet and excerise  mood swings very irratable depressed extreme anxiety  sleep deprivation  can go for days without sleep never really noticed the hump on the back of my neck as abnormal thought i was just fat and that was part of it but reading about cushings makes me wonder if its a symptom.

I haven’t been dx with cushings yet but all signs point to it. I feel weird saying this because i don’t want this but for years i’ve not had an answer and in a weird way it would be a relief to know why i always feel bad, fatigued, no energy. I’ve always just said well its because of the weight. Obese people don’t have energy. But now It’s affecting my whole life.I can’t do things with my kids or be close with my husband who i love to peices. I just want an answer so i can be better.  sorry thisis so long but its a decade of issues and hard to get it all out .

thanks for reading my story.

~~

2)

My name is Sylvia i’m 36 married for 17 yrs with 2 great kids.

I’ve never been one to go to the doctor.I have to be about dead to go. I haven’t seen a dr. since 2008.

Last month i started having some kidney problems and decided to go to a urgent care clinic thinking it was probably a kidney infection. I had went on a trip over the labor day holiday and went about 8 hrs from where we live.

i have noticed when i ride for a long time or walk long distances my whole body would swell up. by the time we got home my feet were 3 times the size and i couldn’t pee. so the urgent care did test i didn’t have a kidney infection but my bp was high and whiteblood count high also.

i have had a high white count for years and nobody could ever figure it out other than anemia. two days later the dr called me to repeat the lab and the whitecount was even higher. i also had a 24hr urine test that came back abnormal high creatine level. so they referred me to a blood specialist and kidney dr. went to the blood dr. first which i had already seen in 2008 for the anemia, they said i was ok probably just a person who runs a high whitecount naturally. so that didn’t help me. but i did ask for them to order a mamogram and found a nodule so i go for a biopsy next week. so maybe it was a higher plan to go there. hoping for a good result.

then i went to the kidney specialist and he is the one who brought up cushings. i had never heard of it before. and at the time i was so overwhelmed that i didn’t even ask any questions went today for a renal ultrasound and in three weeks i redo the 24hr urine to check the cortisol levels. i didn’t know about cushings till i got on here.

i have just about all the symptoms. i’ve gained about 50lbs this year and have been under an extreme amount of stress. had a family tradgedy and figured all the anxiety and depression was from that but i’ve had bouts of depression in the past. i also have swelling in my hands feet legs and stomach. headaches, joint pain, recent high bp, mood swings, irriatability, no sex drive, panic attacks and severe fatigue. and i never noticed the hump on the back of my neck as abnormal till i read about it. i thought it was from the extra weight. i have gotten up to 315lbs. i can’t find clothes to fit anymore and my stomach makes me look pregnant. my self esteem is low and i’ve always been very social and now i don’t want to be around people at all.

i’m really hoping i can find out whats wrong with me. i just thought i was obese and fat people don’t have energy so they feel bad. i don’t want to have cushings but i’ve felt bad for so long it would almost be a relief to just get diagnosed so i wouldn’t feel like it’s all in my head.

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Catie, Possible Steroid-Induced Bio

September 14, 2026

MaryO Golden Oldies, Steroid-Induced , , , , , , , , , , , , , Leave a comment

A Golden Oldie

Hi.  My name is Catie.  I am 49. I am asthmatic and have COPD.  I am tired of being sick and no one listening to me and knowing that something is wrong.

I have been pretty sick since November 1999.  I am constantly on steroids of one kind or another because of my lungs being pretty bad.  I have to use steroid inhalers daily and I have an updraft machine that I use daily also.  I had a complete hysterectomy in January 2000.  The doctors all told me that was what the problem was.  I was still sick afterwards.  I started having stomach issues in 2001.  I was vomiting all the time.  My primary doctor of 23 years would not listen to me when I would tell him that something was wrong, that the pain in my stomach was horrible, that I was vomiting bile all of the time.  He told me flat out that couldn’t possibly be true because I wasn’t loosing any weight.

I had a heart attack in 2002 and while in the hospital my heart doctor ordered an endoscope done.  I was then told that I had acute gastritis and GERD along with gallstones.  My gallbladder was removed.  I was still sick most of the time and now on even more medicines to calm down the gastritis.  I was becoming so tired and so weak that my heart doctored ordered a sleep study in 2003.  I am now using a CPAP.  It has helped my sleep and the GERD, but I still felt so bad all of the time.

The weight kept piling on, mainly in my stomach, neck, face and shoulders and what is that bulging fat pad between my shoulders?  I just cry when I have to look in a mirror at myself.  I am not a vain person but I used to have such pretty eyes, now my eye lids are red all of the time.  I wear sunglasses whenever I go anywhere and I never wear any low cut blouses because my chest is red all of the time.  I was becoming so depressed about not being able to loose any weight at all no matter what I did and no one really listening to me when I would tell them that something was wrong.  Why was my face so red all of the time?  Why couldn’t I loose any weight, even a pound?  Why am I so tired and weak all of the time?  I have to have my glasses replaced every 6 months because my vision is so distorted.

One doctor gave me antidepressants that almost killed me.  I am so allergic to medicines now that if a doctor gives me a new one I am afraid to take it, especially all of the new and improved medicines.  I basically gave up on going to any doctors because no one would listen to me.  I am constantly getting pneumonia no matter how careful I am and in 2009 things became worse and I found a new doctor.  He ordered a complete blood test and told me that I was diabetic.  I was put on meds to try to control it but nothing worked.

It doesn’t matter if I eat carbs or not, my sugar is uncontrollable, so I was sent to a specialist.  On my first meeting, a month ago, he sat down with my blood test results and told me that I had abnormal liver levels and my AC1 was 14.8.  Yeah, way high, it should be below 5.  Then he said that just by looking at me he was 95% sure that I had Cushings disease and that is probably the reason for all of my sugar problems that are going on.  I was put on insulin immediately and I had to do a 24 hour UT.  I am supposed to go back this week on Thursday 10/21 for the results.

Nothing has been said about the abnormal liver levels that are pretty high, so I don’t know if or when that will be talked about.  Will the UT show what that is all about?  I had never heard of Cushings and started looking it up to see what all it entailed and I found this site.  I have been reading through the posts and it sure sounds like a lot of my complaints.  I know this sounds awful but I really feel like it would be a relief to say, “YES, this is what is wrong with me!”  Does that make sense?  I do not take hormones, there is too much cancer in my family for me to take them.

I have a horrible time with stress issues and I try to avoid any stressful situations but not knowing what is wrong with you is stressful in itself.  I do take 2 high blood pressure meds, blood thinners because I have 3 stents.  I have 2 arteries that are 50% blocked but they won’t do anything until they are 60% or you have another heart attack.  How awful is that?  I was put on a diuretic and potassium and boy they give me leg cramps that are out of this world but it has helped the pitted edema in my legs.  I take 3 stomach meds when I have flare ups but not all of the time.  I do not drink alcohol or smoke.  I can not exercise much because I just don’t have the energy or the air to do much.

I basically am stuck until someone somewhere decides to try to find out what the problem is and doesn’t just pat me on my head and tell me to not worry and here take this pill.  I am so frustrated and tired.  I have a good family support system but even they get tired of hearing that I am not doing well.  I don’t go anywhere or do anything anymore.  I used to do needlepoint, sew time period clothing for rennaissance fairs and oil paint but I can’t see well enough to do it anymore and my hands shake too bad even if I could see to do it.  Boy, talk about a pity party.  Sorry.  I collect Tonner dolls, Barbie, love to read even if I have to use a magnifier over my glasses, take animal pictures, watch movies, cook and I adore cats.

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Voices from the Past: Kali, Undiagnosed Bio

July 7, 2026

MaryO Undiagnosed , , , , , , , , , , 2 Comments

undiagnosed3

 

Hi Everyone,

My name is Kali, I’m 20 years old and I’ve been on this journey for a year and a half now. Before this all started I was petite 5’3″ and 123lbs at my heaviest, I was incredibly active, I played multiple sports including soccer, ringette and swimming and I worked out 4-6 times a week. I stumbled across this wonderful website last night after becoming so frustrated with the way I have been treated and bounced around from doctor to doctor. Honestly reading some of your stories is like reading my own. I’m hoping someone will be able to reach out and send some advice my way.

This all started last year when I noticed all of a sudden my regular work out routine had become extremely difficult my legs fatigued quickly and my heart started racing just walking. I went to my GP who said I was having panic attacks while walking around. I of course said this wasn’t possible and left discouraged. 3 days later I ended up in the ER due to a racing heart rate at over 180bpm while lying down.

Now fast forward 6 months, 7 rounds of blood work and 5 appointments with 2 cardiologists and everything came back normal. I was fed up. I now couldn’t even walk up a set of stairs without becoming fatigued and working out was no longer in the picture at all. I even found getting out of bed in the morning difficult. The doctors all said it was in my head, it was anxiety, I needed to push through and everything would get better. Funny thing was I used exercise to deal with my anxiety for many years and I knew this wasn’t anxiety.

I honestly ended up no where and sort of gave up. Some doctors thought it was hyperthyroidism, 1 thought Wolff-Parkinsons White but everything came back normal and they all settled on a diagnoses of anxiety and I was prescribed multiple different anti-anxiety and antidepressant medications which my stubborn self refused to take. I accepted that I couldn’t work out or run or be who I used to be and I focused on school and tried yoga, light jogging and small sessions of weight lifting instead of intense gym work outs.

Now we fast forward another 2 months or so. I started craving sugary foods, I had never had a sweet tooth before I never even used to like chocolate and all of a sudden it was all I wanted. I developed a lot of back pain between my shoulder blades and I just assumed this was all because of upcoming exams, bad posture and just life. I really shouldn’t have.

4 more months go by and I went home after school finished. My mom immediately said I had gained weight. I mean I had noticed some of my clothes were tighter but I figure I just accidentally put them in the dryer. 2 weeks later. Nothing fit. I had outgrown all of my clothes in just over a month. When I stepped on the scale I thought it was broken. I had gained over 30 pounds in less than a month. 123 – 156lbs. My face was puffy and red with acne, I had a huge hump between my shoulders. My breasts doubled in size, my stomach was huge but my arms and legs were normal. I immediately went to a new doctor recommended by a friend and she agreed something wasn’t right and sent me straight out for some bloodwork. But of course…. everything came back normal. I even did a dexamethasone suppression test which too came back normal.

I have all the trademark signs of cushings syndrome. Round red face, buffalo hump, bruising easily, unexplained weight gain primarily in the face and abdomen, purple stretch marks on breasts and thighs, muscle weakness, tired all the time, heart palpitations, increased thirst and sweating. But I cannot get a positive diagnoses to save my life. I don’t know what to do. Not 1 doctor has been able to make 2 + 2 = 4 and I’m so upset. I hate looking in the mirror, I hate waking up with 0 energy and no clothes to wear everyday. I’ve seen 3 doctors, 2 cardiologists a nurse practitioner, an endocrinologist who didn’t even give me the time of day with my normal results and I’m scheduled to see an Internist in about a week. Should I just ask him to send me for an MRI? I feel like that is my only option left.

If anyone has any suggestions of what direction I should pursue that would be much appreciated. It’s hard to fight for yourself when you’re the only one on your side.

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Voices from the Past: Desirae (Desirae805), Undiagnosed Bio

July 5, 2026

MaryO Cyclic, Undiagnosed , , , , , , , , , , , , , , , Leave a comment

I am a 24 year old newly graduated registered nurse (dec 2011). Who is currently undergoing testing to confirm or r/o cyclic cushings at UCLA.

I have always struggled with my weight and self esteem and I finally had enough in april when I went to see an endo to see what was going on I mean how could I not be losing weight netting 1100-1200 calories aday and doing spin class and 5k walks! I have done every diet known to man and ws even anorexic for a while.

I had elevated urine test at UFC of 69.7, not high enough to confirm cushing but is very suspect because of my s/s. I have round, face, abd obesity (most people think I am pregnant), stria, hair loss, fatigue, anxiety, tachycardia, muscle cramps (low potassium), buffalo hump, and so on and so on. I am so frustrated I just want to cry all the time, I just want to know what is wrong.

Curently I am to see my doctor in 6 weeks and have 10 24 urines and 12 salivary cortisols to do. I am a nurse and doing a 24 urine at work is hard. I am supposed to get married next year and I want to feel beautiful not sick, not tired, not neck pain, and not heavy.

I am tired of hearing you probably don’t have that it’s rare when obviously something is going on. AND I HATE hearing your YOUNG you can lose weight when ever you want.

Voices from the Past: Heather P (Heather), Undiagnosed Bio

July 4, 2026

MaryO Hashimoto's, Male, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , , , , , Leave a comment

undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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