Home

Grace (Grace), Undiagnosed Bio

1 Comment

Hi Everyone

I suspect I may have cushing’s syndrome or disease but all I know for sure is I’m sick, I don’t know what’s wrong with me……..and I want to get better.

I just turned 25 in March but looking back i think i’ve been showing symptoms for the last 13 years.

At the age of 13 over the school holidays I gained a bunch of weight (14 kg in a month and a half) and since then my weight just keeps climbing up. I also became lethargic, depressed, unmmotivated, struggled with my concentration and continue to do so. The  stretch marks followed the weight gain.  I definitely have a really round face, which I guess could be moon face. My face gets really red and flushed. I have very little body hair but its quite strange that i have hair growth on the lower part of my fingers and toes. I have a significant amount of foot pain especially when I get up in the mornings. I have lower back pain too. I wouldn’t say my periods are highly  irregular but they are often off from my usual 28 day cycle by about 5 to 14 days. This is becoming a more frequent occurrence.  My skin is really thin, soft and doesn’t heal well. Small cuts and bruises take longer than usual to heal and almost always leave scars. I feel hungry and tired all the time.

The depression and fatigue is by far the most debilitating of all the symptoms I have suffered from. My grades in school and later on University have steadily dropped since the age of 13. I find it really hard to concentrate. It was only when I began failing in uni that my parents finally allowed me to see a doctor who was a psychiatrist in 2009.

I had an abnormal EEG showing evidence of seizures. The evidence was not sufficient enough to diagnose me with epilepsy but he called it seizure equivalent depressson. I was then put on heavy rounds of anti-depressants and anti-convulsants which kept on being adjusted. Different dosages and combinations would work for awhile then stop so that meant  more combinations, stronger drugs and higher dosages. To cut a long story short I finally quit the meds in Dec 2011 and began to see a new psychiatrist in May 2012 who ordered blood tests, a thyroid test, sleep-deprived EEG and an MRI.

My blood sugar and cholestrol is normal but heading towards the high range which worries me but not suprising given that I’m obese. The EEG again showed slight evidence of seizures but when I was referred to a neurologist he said I show no evidence of seizures and that normal people have abnormal EEGs all the time(?????) This is despite a history of epilepsy on my Dad’s side of the family. What about non-convulsive seizures-could this explain the lack of poor concentration?

The MRI came out normal, only showed that I  suffer from chronic sinusitis. But then again it wasn’t done by a specialist in the diagnosis of pituitary tumours and they most definitely were not looking for one so if there is a microadenoma, its flown under the radar. The blood tests showed I have a low white blood cell count (neutrophils and monocytes). My cortisol level was normal but then again it wasn’t a 24-hour cortisol test.

From my own research I found that chronic sinusitis could be linked to the depression but my Psychiatrist seemed to be unwilling to explore these leads any further and advised me to stop researching so much online. At the same time he put me a new round of anti-depressants and anti-convulsants which left me feeling weak, tired and drained. For the first two weeks I slept all day and could barely get out of bed. I quit these too in September 2012 and since them haven’t seen any doctors but symptoms remain and its a struggle to live with them every day.

I am still financially dependent on my parents who are tired of my constant “depression” which they feel is an attitude problem so I don’t even speak about it with them any more. They feel I should just try harder. I hope to graduate from  Uni this year but due to my health problems I’m  3 years behind and my grades have suffered. I have health insurance which makes it very difficult to get referrals to specialists and they hardly covers pre-exisitng conditions. All treatment described above was paid for by my parents and not health insurance. They are retired now and don’t want to spend a ton of money they don’t necessarily have, looking for a phantom condition. I understand their point  of view but I feel if I had a child I would do all I could to help them get better.

The more time that passes the more difficult it becomes and the more paralysed I feel. I have a part time internship at a law firm that is even becoming too much now. I can barely study. I’ve lost almost all my friends either because I isolate myself or am too tired and depressed to be there for them like a good friend should.

As of March 2013 I went to see a gynacologist about my irregular periods he ordered another thyroid test, prolactin test and a Pelvic scan so i’ll see how that goes….maybe its PCOS.

Anyway I have no one to talk to . I don’t know what to do next. I wonder if anyone else has been/is in a similar position.

Thanks for listening

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

Alexis (Alexis), Undiagnosed Bio

1 Comment

I’m 32 year old female from Virgina Beach. I started to write this really long story here but then decided I will wait and see if my test comes back positive for cushing’s. I will say that I have been dealing with the craziest symptoms over the past 6 months. Look back I think my health issues are related to this disease. I have always dealt with kidney stones and allergies.

My current symptoms include

-Buffalo Hump

-Horrible pain in back, arm and legs

-Kidney Stones

-Mood Swings

-Gained 25 lbs

-Fogginess, can’t complete sentences

-Moon Face

-Swelling in neck. Neck went from 15.25 in to 18 in.

-High Mono count on blood test and low Vitamin D

-Lethargic

-Crazy sensations, numbness, burning, aching

-Really high resting heart beat

My Primary Care Doctor, Pain Management Doctor and ER doctor’s had no clue. Most look at you crazy or they know something is wrong but had no idea what. They really didn’t do any detailed testing until 2 months after all the symptoms.  I was so frustrated. They got me into a Neurologist which I see this week. Luckily, I switched primary care doctor’s and after one visit  with my new doctor she decided to test me for Cushing’s. I’m a very detailed person and really started to pay attention to my symptoms. I started to keep a journal and took photographs as my body was changing.  I think my new doctor had an advantage.   I’m grateful I met her and that she took time to look at my history and is willing to think outside the box.

Mind you I am an athlete, I love the outdoors, wakeboarding and being active is important to me. Since March I have completely changed. I’m lucky to make it to work. I always look forward getting away from work and going home to sleep. The pain is unbearable in my legs and back.  I refuse to take medicine until I get a diagnosis. I don’t want any meds to mask the symptoms.

I work in a recreation center where my heart belongs and it makes me sad to see how my body has changed but I’m grateful for my new doctor and hopefully will get back to normal soon.

Whether I have Cushing’s or not I’m glad I came across this site to see such a wonderful support group.

Sincerely,

Alexis

%d bloggers like this: