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Alex C (Alex C), Undiagnosed Bio

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Hi, My name is alex and i honestly have no idea what’s wrong with me.

about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…

finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered

one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…

 

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Jane (Jane), Undiagnosed Bio

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undiagnosed3

 

Hi. I am retired RN in Oklahoma.

I have undifferentiated connective tissue disease, chronic kidney disease and peripheral nerve disease in arms and legs.

I had an autoimmune disease in 1972 called Guillian Barre that left me with residual neuropathy.

Recently my PCP noticed I had hyperpigmentation and thought it might be Cushing’s. My ACTH was in the upper 70s, serum cortisol normal. My weight has been out of control for years.

I did 24 hour urine with normal result. My PCP ordered MRI and showed suspicion for 6 mm adenoma left side of pituitary. Saw endo who ordered 1 mg Dex test. To see neurosurgeon in Dec.

Have also had some severe headaches and intermittent nasea and vomiting (both unusual for me). Also unreasonable emotional outbursts totally out of character for me. If I have Cushings it must be cyclic or subclinical. I haven’t done my Dex test yet because I just don’t know if I should do it when I feel really bad or really good. I’ve felt like my life has been a roller coaster of highs and lows for over a year now.

My endo said if my Dex test is positive she would need to send me to Mayo because she has never dealt with this and there is no one in Oklahoma she can send me to. I have read many bios on this site. It’s crazy how long it takes for people to get diagnosed. Literature says timely diagnosis is so important in relationship to good outcomes. I don’t have the Cushings striae. I do have really bad swelling and pain, fatigue. I’ve been on a daily diuretic for almost 30 years. If I miss it my face and hands swell up and one eye gets red and tears. I feel like my problems began after I had my last child 30 years ago.

Sending good thoughts to all of you out there and what you have and are currently going through. There are lots of heroes here, and even if my problems turn out to be something else, this website has been a life savior. Thanks so much for being there.

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Meriam S (Jomisa03), Pituitary Bio

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The pituitary gland

The pituitary gland

 

My name is Meriam San Antonio, 52 years old from Fairfield, California. I have been married for 19 years and have three teenage children. I was sick for almost 7 months ( starting March 2013) and the doctors couldn’t figure out what is wrong with me. My symptoms were being bloated, had edema on my feet and legs, swollen all over, had a “moon face”, bruising on my hands, myopathy/neuropathy, aching nerves, bloated stomach (as if I was pregnant), double vision, and lost my ability to walk.

I have been in and out of the ER due to having a congested heart failure, urinary tract infection, colonitis. I suffered from acute depression and tried killing myself. My blood pressure and blood sugar was soaring so high and uncontrolled.

After a series of tests, I was finally diagnosed of having Cushing’s syndrome. A surgery was done on August 2013 to removed my pituitary gland at the left side of my brain.. I had to take an early retirement from work and currently on Social Security Disability.

Two years had past and I have recovered. I lost weight, my blood sugar and blood pressure were now on the normal range. It seems after the surgery, everything was back to normal. I can now walk on my own ( without the help of a cane, walker and wheel chair) but had to undergo a knee replacement as I fell many times on my knees due to nerve weakness. I had a rough time and had gone through a lot.

I stopped taking my PTU medication as told by my doctor as I am already “Cushing’s free”.

But my endocrinologist just informed me that the result of my thyroid test was high. She ordered me to take a “nuclear iodine test” next week. I am so worried that my Cushing’s will come back. I do not want to undergo such experience as I was so traumatized by it.

 

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Sherry, Undiagnosed Bio

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A Golden Oldie

I am a Veteran who goes to the Veteran Clinic for my healthcare.  I have been going there for a little over a year.  I go to a womens clinic for both my primary care and gyn.

Backing up a bit…Since my youngest son who is turning 18 next month was about 3, I recall the onset of many of the symptoms of Cushing’s Disease.  However, I didn’t realize what was going on. I believe a lot of my symptoms started when I fell down backwards down a flight of stairs breaking my elbow and wrist.  I really haven’t been the same since. I have slowly put on 120 pounds over the years, all of it being in my mid-section.  I have suffered off and on migrane headaches. My arms and legs are thin as rails compaired to my mid body.  My skin has gotten transparent and dry.  I have the thick cushion of fat tissue between my shoulder blades.

Then in 2007 I had a severe hysterectomy due to massive bleeding/clotting and cysts.  I had serious complications which include blood clots in my legs and also a PE.  I have gone down hill from there.  My bones, muscles and joints ache so bad and can barely get up and down.  I can’t hardly stand more then a few minutes at a time. I have fluid retention so bad that my current doctor finally put me on lasix daily. Finally I suffer from depression and anxiety and I hate to go out in public because of my condition.  Though my husband gets frustrated with me he is still very protective of me and helps.

I have had so many doctors imply  that my problems are phycological or due to my obesity and I am simply tired of that.  I am on 17 medications now due to blood pressure, fluid retenstion, thyroid, diabetes, neuropathy, depression and anxiety, cholesterol and to insure against a heart attack.

I am 52 years old and I feel like my life is coming to an end.  I just recently was reassigned to another primary doctor as my old one left the clinic.  I didn’t like her at first, her personality was so different from my last doctor.  But Friday she did a completed physical and gyn exam.  She asked me if I had ever been diagnosed with Cushing’s Disease.  I had never heard of this disease.  She started pointing out all the classic signs. She decided she wanted me to have a blood test and was very determined I had it done.  I went home and researched it and indeed I have all but maybe one of the symptoms.

I am a little bit nervous about it and realize its a waiting game as far as tests and more test.  On the other hand I feel like I can finally put a name to what’s been going on and hopefully feel better.  I am glad I found this support group and would enjoy talking to others

UPDATE March 6, 2012: Also, additional systems include excessive hair growth on my face, foggy vision, inability to concentrate, red patchy marks on my arms and I have been told I am slightly bi-polar as well at suffering from anxiety and depression.

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