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In Memory: Diana Crosley, June 18, 2014

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diana2003a

Portland, OR, Cushing’s Conference, October 2003, Day 2, at a “House of Magic” dinner.

diana2003b

Portland, OR, Cushing’s Conference, October 2003, Day 3. It was very windy on the Oregon Coast!

diana2005

Brighton, MI: Cushing’s Weekend, October 2005

diana2007

Columbus, OH Cushing’s meeting, 2007

Diana’s official obituary from Adams Funeral Home:

Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family.  She was born September 30, 1955, in Sidney, the daughter of Francis Alexander, and the late Laverne Egbert Alexander.

Diana is survived by her father and step-mother, Francis and Carole Alexander, of Sidney; daughters, Stacie Crosley, of Columbus, Casey Crosley, of Silver Spring, Maryland, Ericka Crosley, of Sidney; one granddaughter, Ella Laws, of Sidney; two sisters, Kathy and Randy Watercutter, of Minster, and Susan Alexander, of Mt. Vernon, Missouri.

Diana was a 1973 graduate of Anna High School. She was a registered nurse for many years. In her spare time she enjoyed meditating and doing yoga. She also enjoyed relaxing at the beach in Florida.

Her family, her children and especially her granddaughter, was the love of her life. She will be deeply missed by all.

The Crosley family would like to express their sincere thanks to Ms. Lisa Blagg and the entire staff of Wilson Hospice for the continued compassionate care of their mother during her extended illness.

Funeral services will be held on Saturday, June 21, 2014, at 3:00 p.m., at the Adams Funeral Home, 1401 Fair Road, Sidney.

Family and friends may call from 12-3 p.m. on Saturday, prior to services at the funeral home.

Memorial contributions may be made to Wilson Memorial Hospice in Diana’s memory.
Envelopes will be available at the funeral home.


Diana’s Cushing’s Help bio:

As with everyone who suffers from this disease, mine is a rather long story.

In retrospect, I believe I became symptomatic sometime around 1994. Particularly, I remember the weight gain and facial hair. I was also somewhat depressed, but at the time I was in an emotionally and physically abusive relationship and had a lot of “on the job stress” in my position as a psychiatric nurse, working for an HMO. In addition, my grandmother was ill, I turned 40 and I attributed most of my problems to “life” In 1995, I accepted a job transfer from Dayton, Oh to Birmingham, Al. My grandmother had died and I needed to get away from the relationship. Unfortunately, the office in B-ham closed after approx 18months and I accepted a position as RN/Medical director at a residential facility for children with autism, seizure disorders and behavioral problems.

Meanwhile, I continued to gain weight, I began to notice some “swelling” on the back of my neck, I bruised very easily and had problems concentrating. I went on the Phen-fen diet and lost approx 40 lbs. Of course, now I’m wondering How did that happen? If the weight gain was Cushing related In June of 1998, I was thrown from a horse and fractured my pelvis in two places. Again unfortunately, the initial x-ray didn’t reveal any breaks, so I continued to work in extreme pain. My physician kept saying I was “just a slow healer”

At this point my blood pressure skyrocketed, the slightest scratch or bump would result in a major hematoma and skin tear. I had a cardiac work-up and was told I had ischemic tissue in my left ventricle and was sent to Houston for a cardiac cath.

Ok this part’s kind of funny, now of course at the time I couldn’t believe it. If anyone’s familiar with Houston, you know how terrible the traffic can be. I arrived for the cath, at 8am I was prancing like a wild animal in my room as I waited for the nurse to bring me my “sedative” At approx 11:00 she came in and began to take my vitals. Almost simultaneously, she was paged, returned to my room to tell me that the cardiologist had broken his tooth while eating a muffin for breakfast and all his procedures for the day were cancelled. I had to reschedule. Thankfully, when I did have the cath, he told my my heart” was beautiful” When I asked about the results that said I had dying tissue he replied “Oh, that must have been a blurp on the film”.

Moving on, even though my heart was fine, I had now regained all of the weight I had lost and was in constant pain. I then moved to Florida to stay with a friend’s mother, who had suffered a stroke. I began working per diem as a Home Health RN. I kept getting worse in all areas. I went to a doctor in Fl. who told me I was depressed and getting older, ergo all my problems. He told me that the buffalo hump was a fatty lipoma and referred me to a surgeon to have it removed. I went to a surgeon for a consult, was scheduled for surgery and my COBRA ran out on my insurance and I couldn’t afford to continue it.

I then went to a plastic surgeon, who confirmed it was a fatty lipoma, of course One of the biggest he had ever seen. He even photographed it to use for teaching seminars. And don’t you know, it grew right back. I spent 1700.00 (on credit) and it came back. At this point, I was having trouble standing, sitting, lying down. I was in constant pain and was having a lot of problems just trying to do my job. I went to another physician who thought I was depressed and maybe had leukemia because my lab work was all screwed up. Here again, the bad news was I was dying but it might take twenty years for the leukemia to kill me. At this point, I was ready to hang it all up.

Then, in Aug of 2001, I had just seen my last patient and was on my way to the office to complete the paperwork when a young man did a U-turn and t-boned me on the driver’s side. This just about put me over the edge, however, again, on the bright side, I went to a chiropractor, whom I had been seeing, and she ordered an MRI of my back. The MRI also, incidentally, revealed massive bilateral, adrenal hyperplasia.

I contacted the Nurse’s Endocrine Society. They sent info on Cushing’s. I could not believe the sketching of the women with Cushing’s it looked just like me. I also fit the symptom profile, almost completely. I was referred to an endocrinologist in Melbourne, FL. He did the 24-hour urines and dex test, confirmed the diagnosis, I was already convinced. He contacted the NIH as I didn’t have health insurance. I had a bilateral adrenalectomy (right side laproscopically and open left side as I began to bleed) Jan 17, 2002. I was discharged on Jan 26th.

I came to Ohio to stay with my daughters while I recovered, never thinking in my wildest imagination that that process would be so lengthy and utterly miserable. I hurt everywhere like I had never hurt before. I developed a serious sinus infection I went back to Florida in Feb. I stayed with friends. I applied for disability, I hoped for a worker’s comp settlement for my back injury. The insurance company who was handling my claim filed Chap 11 and all pay outs were suspended. They did pay for some physical therapy. There contention is that it was the Cushing’s that was my major problem and not related to the accident, however, duh! They’re right, but because I had the Cushing’s the injury I incurred in the accident was more severe than the average person would have sustained.

When I went to the NIH in Jan the chest X-ray revealed multiple healing rib fractures which were most likely a result of the accident. So, I’m still awaiting word on my disability, I was denied, appealed, denied again and am waiting for the hearing. In the meantime, my car was repossessed, I will most likely have to file bankruptcy and am now staying with my oldest daughter in Columbus.

I have lost approx 55lbs, my skin is healed, my buffalo hump and moon face are gone. I am still in quite a bit of pain in my joints, muscles and bones. I don’t have the energy I would like to have and I still have spacey moments. The mental part has been tough. A lot of days I really wanted to be dead. I was on morphine for my pain and I was so sick I would start vomiting and it would go on for 24-36-48 hrs. I finally quit taking the morphine and thank God, that has stopped. I am relying on my family and friends for everything and I’m used to being the giver, not the taker. I guess I’m learning to be humble and I am so much better, it’s just that I’ve just gotten access to the internet, and have been reading the chat board and message board and it seems that I am still a “slow healer”

It has been one year since that surgery and I guess my expectations were that if I kept trying to be patient, get through this year things would be back to a semblance of normalcy. OK I know I’m wordy.

Thanks for the support and I would welcome input from anyone.

Diana

Update January 28, 2011

It’s been awhile since I’ve been on the boards and I’ve tried to update my bio on occasion. However, due to my impaired technical abilities (lol) I was unable to figure out how to do so, even though Mary has made it SO easy. Again, lol

Anyway, the first five yrs post BLA were painful and traumatic but also a blessing. In 2005 I started taking yoga classes and that was the beginning of an amazing transformation for me. It led to meditation and an exploration of the spiritual meaning of this illness and of life in general. Of course the transformation wasn’t immediate and it is ongoing but I feel so blessed to be experiencing this life. I’ve learned to be grateful for the gifts of all of my experiences. Without Cushings, I never would have met some of the most caring and amazing people on this earth.

In July of 2008 I returned to Florida. I am now living in a little beach town, bought a bicycle and ride it almost every day. I still have pain, but it’s manageable and I focus on my breath and gratitudes as a way of managing it. I’ve learned the value of positive thoughts and intentions. I’ve learned that we are all more powerful than we may have ever imagined. I’ve met some amazing people here and continue to read and attent seminars and classes on exploring my purpose in this life and the gifts I have to give to the universe.

To all who are just beginning this Cushing’s journey, and for those experiencing the feeling of “no light at the end of the tunnel” -the light is there, just waiting for your arrival.

You can and will get through this, your life is not over.

Again, many thanks to Mary O who has given her gifts to help other souls navigate their way through a painful time

Much love to all
Diana

Mary S (ladysslipper), Adrenal Bio

1 Comment

 

Originally from December 28, 2007

I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.

Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.

My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.

My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.

With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.

I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.

 

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Suzanne (Suzanna), Undiagnosed Bio

1 Comment

Hi all,
Looking for some knowledge as I feel like my GP had been really unhelpful over this.

So I went to see him for some infected bites a few weeks ago. It’s really difficult to get an appointment with him so while I was there I figured I would mention my water retention. I’ve suffered with this on and off all my life (I’m 35) but lately it’s been a lot worse. I suspect my contraceptive pill, it’s called Yasmin (Yaz) and I’ve only been taking this particular one for about 18 months.

He sent me for a full blood MOT (vintamns, full blood count, liver function, thyroid, iron, etc etc, there were about 10 altogether).
The results of these came back and all were fine except the Cortisol level. I knew what this was because I’m a dog trainer/behaviourist and in dogs, Cortisol is referred to as the stress hormone. GP said a normal morning level was between about 166-507….mine came back as 1023!

He ordered a repeat Cortisol blood test and a 24 hour urine test. I’m still waiting on the results of the urine test but the second bloods came back yesterday at a level of 798. Obviously still very high, although lower than the first time. He says it’s likely I have Cushings. Cue massive panic as Cushings is very common in dogd and I have cared for a lot with it and it really isn’t very pleasant in dogs 😦

GP says it’s caused by a tumour and I will have to have medication and/or an MRI scan and possibly brain surgery. I seriously do not fancy this when my only complaint is water retention!!

I do have quite a busy life, I work as a dog trainer and also run around after a five year old. I’m a naturally stressy person too, and worry excessively about things that don’t really need to be worried about.

My GP, when asked whether this could be caused by my pill, said no. But the other symptoms I get with this pill are occasional heart palpitations, mood swings, a feeling of buzzing sometimes, like adrenaline is coursing through me (I’ve always thought it was the estrogen?!) and increased appetite for sweet things and wanting to eat junk all the time.

My Herbalist is almost certain this pill is causing my hormone problems and is responsible for the high Cortisol levels. So I’ve decided to stop taking it for a couple of months and ask for a repeat test and see if it has made any difference. My Herbalist has also recommended Hemaplex and something called Ashwanganda.

My GP’s current plan of action is ‘wait for the 24 hour urine test results and then refer to one hormone specialist or another’.
Does anyone have a similar experience that could help me? Many thanks in advance 🙂

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Vic (Tori276), Undiagnosed Bio

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Numerous stressful situations in the last 8 years (death of a parent, breakdown of long term relationship), weight gain around truck and abdomen (despite not eating any more), bleeding when exercising (even what I would consider moderate), history of hydrocortisone use on face daily for last 26 years.

Started experiencing weight gain, and muscle pain and weakness with serious fatigue within last 3/4 years. Have recently developed stretch marks on abdomen and worsening lethargy, muscle pain, back pain, hip pain and gastro-intestinal issues etc. I have ALWAYS suffered weakness in my ankles when stressed and they often give way.

Currently under a lot of stress of work, but most of the pain went away with lots of walking while on holiday for a week.

I previously tried Agnus Castus a few months back for what I thought were hormonal issues, but suffered bad side effects and stopped taking them.

Recently took all the hormone and thyroid blood tests and had high blood pressure, high cholesterol and high prolactin. I was advised to have a cortisol test given my symptoms of stretch marks etc. I am currently waiting on the results…

 

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Niamh (niamhiblog), Adrenal Bio

3 Comments

adrenal-medulla

Full link to my blog: https://niamhiblog.wordpress.com/

I will never forget the day my hair loss went from “God, don’t I leave a lot of hair around the apartment” to “F***!!!! ”. I’d always considered my hair as one of my best features, it was long, wavy, strong, shiny and I loved it! When I started to see handfuls coming out in the shower it was terrifying. I was like a chemotherapy patient, it was unstoppable and devastating. I saw up to three GPs (Family doctors) who all only seemed interested in the level of stress in my life. Not one of them really took me seriously, I did a couple of blood tests, out of my own persistence that something was wrong, but nothing jumped out of these results to my doctors. I kept being told that my hair was falling out because I was stressed but I was stressed because my hair was falling out!

To be fair, this was a particularly stressful time in my life. I had just finished a year working abroad, in Portugal, which I’d found very lonely and isolating. I’d just returned home to Cork but things didn’t pan out the way I had hoped they would on my return. I was living on my own and trying to reacclimatise to something which wasn’t the same. Around the week leading up to the extreme hair loss I’d found myself in a particularly stressful situation. After about two weeks the hair loss settled down from terrifying to worrying. Since no one seemed as bothered by it as I was, I let it take a back burner. The doctor told me it was normal, the hairdresser told me it was common, I fell into accepting that there wasn’t a problem.

Flash forward five months and I’m sitting in my bosses’ office for a meeting. I look down at my arm, both my arms are covered in purple spots. It’s not itchy. It looks like a rash. I run a glass over it. The spots don’t disappear. I let out a loud exhale “phew it’s not meningitis. I’m fine”. I go to carry on with the meeting. My boss is having absolutely none of it. She knows that whatever is on my arm is weird. So she bundles me into a taxi and sends me off to an urgent care clinic. Since I was working as a chemist at the time for a pharmaceutical company, the obvious questions were “were you in contact with any chemicals?”, “are you allergic to anything you’re working with?”. I knew I hadn’t been exposed to anything so I decided to tell the nurse about my hair loss. I can’t thank this woman enough for the next question she asked me. This was a moment, although I didn’t know it at the time, that went onto change my life. She asked me “has the shape of your face changed?” To this I went ABSOLUTELY!

I’d put on weight in the previous year. It had started when I was living in Portugal. I’d put it down to a diet of beer and white bread. I hadn’t known, but any friends who’d come to visit me had thought that I’d put on a very noticeable amount of weight in a very short time. But this hadn’t made sense to me. I was working out at least 5 days a week and even up to 7 days a week. I was lifting weights and getting weaker not stronger. My diet was excellent (except for the booze and cigarettes) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed. I was disgusted by my own body.

So, this nurse spotted something which no one had spotted before. She believed me, she knew that something was wrong and she (along with my wonderful boss) started me along the road to diagnosis and recovery.

Next comes a tremendous mistake from me. My attitude of “era it will be grand” nearly ruined my life and landed me ill in a very serious way. If I’d done what I was supposed to do at this point my disease would have been diagnosed and treated before it started to run away, with me dragged along behind it. I know why I didn’t pursue diagnosis. I was lazy about doing the testing, the hair loss had calmed down, I still just thought I was fat and I didn’t realise how sick I was because I had so many symptoms which came on so gradually that they just became normal to me.

I had my first appointment with an endocrinologist in April 2015. Turns out she knew from one look at me what was wrong. She recommended a 24 hour urine test but I had to be at least 6 weeks off of oral contraceptives for the test. I went off the contraceptives but by the time the 6 weeks had passed I just didn’t bother. I didn’t want to carry around a pee bottle for the day and besides the hair loss had settled down and I wasn’t sick was I?

How did I not realise I was sick?

I’d almost gone bald
I was constantly covered in bruises for no reason which didn’t heal
I never got to the bottom of my strange rash
I was swimming in a constant brain fog
I couldn’t sleep at night but I was tired all day
I put all of my symptoms down to sessioning too hard, being hungover all the time and injuring myself when I was drunk.

That was until I woke up one morning at my friend’s house, admittedly after a night of drinking, without the use of my arms, legs or hands. I woke up really early in the bed with stiffness in my limbs. When I got out of bed my legs were no good to me. I dragged myself to the bathroom on my hands and knees and sat in the shower to wash myself. I went down the stairs on my bum, got into my car and tried to drive home to my mam’s house. It took me about an hour to do a 10 minute drive. I couldn’t get out of second gear because I couldn’t press the clutch, which was just as well because my right leg was no good for using the brakes. Once I got home, naturally I was a bit concerned but I’d loosened out after a bit of movement and strangely wasn’t all that bothered by my period of paralysis!

Once I walked in the back door of my house, with my mother behind me she spotted one of the oddest things! It was like someone had thrown a cup of coffee at the back of my head and it had dried on the back of my neck. At this stage my hair was so thin that the only way I wore it was in a bun at the back of my head. This strange staining was there for all the world to see! I’d no idea how long it had been there given it’s not a part of my body I spend much time looking at. Turns out it had been there about a week and I could even see it growing and spreading up into my hair line and around the front of my face.

Mam wanted me rushed to the emergency unit. I wasn’t so keen on that, so we compromised. It being a Saturday we went to the on call doctor. Now starts the saga of doctors prescribing me steroids, steroids and more steroids. Little did I know that my problem was having too much steroids. I hadn’t heard mention of the term “Cushings Syndrome”. Nobody had brought this up. I took the steroids I was prescribed. I went downhill. I wasn’t experiencing the paralysis but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I couldn’t use a pen with my swollen fingers. Stairs were a struggle with my swollen knees. I hobbled around like an old woman. I didn’t understand what was going on with my body. I was panicking. I went to my GP in Cork, she prescribed a higher dose of steroids. It was only worse I got. She prescribed higher doses of steroids again. I felt this doctor wasn’t helping me, she wasn’t listening to my concerns and her only idea was to keep upping my dose of corticosteroids. What a disaster!

Luckily, my aunt is a docotor in the major hospital in Cork. She got wind of my problems, pulled some strings and had me admitted to the acute care clinic in her hospital for the following day. This was the first of my “holidays to CUH” as I started to call them. Here I saw what I can only call a plethora of doctors. Consultants that take months to years to get appointments with were calling to check on me willy nilly. I saw emergency consultants, rheumatologists, dermatologists, radiologists and finally the endocrinologist. We were all working to the assumption that I had some strange sort of viral arthritis which was causing my joint pain and swelling.

face

It was here in hospital that someone got to the bottom of the strange coffee stain on the back of my neck. It was merely a fungal infection (tick off the symptom of persistent infections).

After having received a very stern talking to from the endrochronolgist I proceeded to do a battery of tests including 24 hour and 48 hour urine samples, dexamethasone 24 hour and 48 hour, several trips and “holidays to CUH” all culminating in a MRI to confirm that I had an adrenal tumour producing far and above the natural and required levels of cortisol. This was the answer to everything.

After my diagnosis I started reading up on the symptoms of Cushing’s Syndrome. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.

I had the stretch marks on my arms, sides and legs. I’d though these were from my weight gain but who gets stretch marks on their arms? Turns out my skin was so weak it was tearing.

The cognitive deficiencies. I am someone who had always prided themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself getting stupider. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I found holding a conversation extremely difficult and very stressful. I wasn’t able to engage with people.I wasn’t able to listen, concentrate or respond. My memory was non-existent. Trying to think was like trying to swim through a thick, gloopy soup. I had put this drop in mental ability down to the partying and finding out that maybe I wasn’t as capable as I thought I was in the working world.
Bio, Continued: The bruising. I was bruising my arm from putting my handbag on my shoulder. The purple dots were actually tiny bruises. My legs were constantly just purple. I couldn’t heal. I was doing so many blood tests that the skin on my arms was constantly purple and wouldn’t heal.

Lack of libido. What libido?!

Irregularities with my period. I wasn’t getting periods at all since I’d stopped using oral contraceptives. I knew I wasn’t pregnant, see the point above and thought that I was just skipping some periods.

Brittle bones. I was diagnosed with osteoporosis at 24.

Joint pain. I wasn’t able to bend my knees to get up or down stairs. My bedroom is three flights of stairs from the kitchen. More than once I ended up stranded in the kitchen, not able to get back upstairs to lie down on my bed and feel sorry for myself.

The swelling wasn’t confined to my joints. There were days my face was so swollen it was hard to see out my eyes as my cheeks inflated and rose to meet my brow bone.

Sleep. I’d turned into an insomniac who wandered the house late at night not awake enough to do something but still unable to sleep.

Body hair. I was managing to grow a beard despite going bald! I started to get my cheeks waxed thinking this was a normal cosmetic procedure that other girls just didn’t talk about.

Stress. The choice between two different types of cheese could cause me so much anguish as to leave me in tears.

Up until the point where I was diagnosed, I hadn’t allowed myself to be sick. After the diagnosis I never let myself feel sorry for myself. I just got on with it. Planned for surgery and that was it.

In October 2015 I underwent a full left adrenelectomy to remove a tumour from my adrenal gland.

After the surgery I’d a whole new condition to learn to deal with. My right adrenal had been suppressed while my tumour was active. This left me with no natural cortisol in my body. A 180 deg turnaround from being pumped up on steroids 24 hours a day. I was on replacement steroids but my body was readjusting. I slept most of every day. I couldn’t pick up a carton of milk. If I didn’t take my medication I was in serious trouble.

I was back at work the week before Christmas. This was much too big a leap! I’d been frustrated by the speed of my recovery. I recovered from surgery quickly but the recovery from Cushing’s was slower. I’d expected everything to just go back to normal after the surgery and hadn’t anticipated the gradual decline in symptoms. I ended up getting very sick with a virus and really thought my family would have me admitted to hospital. There are two days that all I can remember is lying on the couch sweating. I lost 8 lbs in a day! I’d pushed myself too far.

And yet I still didn’t learn! I’m not someone that likes to be inactive. I also just wanted life to go back to normal. I returned to work again in January on half days and gradually built myself up to working full days.

Slowly but surely, I was taking less and less medication. I was able to stay awake a little bit longer every day. My mind was coming back to me. I was losing the bright red colour from my face. One day I woke up, looked in the mirror and suddenly had cheek bones again. I looked like my old self. By January I’d gone from a dress size 14 to a 6 with hardly any weight loss. It was just like someone had stuck a pin in me and I was deflating back down to a regular size. My hair was growing back but still had horrible wispy ends so I chopped all the sickness out of my hair. By April I wasn’t taking any steroids. I’d again pushed myself to the limit and instead of tapering slowly had gone down in major jumps. Weeks where I was doing a major jump involved lots and lots of tears. And then some more tears.

By June I noticed that I hadn’t had a day where my joints were sore since I couldn’t remember when.

Things like falling down the stairs because my legs couldn’t support me won’t be forgotten. Standing at the top of the stairs and knowing I can’t get down. My hands turning into claws. Or accidentally going into steroid withdrawals a few days post surgery (I was the crazy patient running up and down the hospital corridor screaming and crying in the middle of the night). These won’t be forgotten but they will fade in importance. The things that won’t are my little brother coaching me through all the tubes I woke up with after surgery, my friends bringing me bottles of diet coke and fancy hummus in hospital, the friend who came to see me every day in hospital, the one who picked me up and took me home, my mam who told me I was brave and that I’d gone through a lot, and the boy who listened to me cry when the pain still hadn’t gone away.

As of today I have been declared fully recovered bar one more hurdle. My repeat bone density scan. In two weeks’ time I have to repeat this to see if I still have osteoporosis. Whatever about having a tumour at 23, being diagnosed with osteoporosis at 24 just isn’t on! I’ve been drinking plenty of milk and tons of cheese though so fingers crossed.

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Turtledove (turtledove), Undiagnosed Bio

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golden-oldie
Monday, December 29, 2008

just found this sight looking for answers to a long list of problems and diagnosis.

I have battled years long of severe stress and well am trying to find out what happenned and how to get well again. I have menapausal estrogen issues not answered shoulder impingement problems and one dr suggested I had phase 3 exhaustion which led me to study on adrenials.

blood work has been done whichis showing elivated red blood cell counts my thyroid levels appear within the normal range but 30 yearrs ago i was treated for hyperthyroidism which even then i suspected was not the right gland. Im wondering if this elivated red blood count is yet another indicaation of this adrenial issue as dr after dr finds this that and the other and treats each as such.

im just learning about this condition an dwhere it appears i am fitting into it but what test will show if it is or isnt? its all very confusing.

i am 51 now and as i have said the last 5 years of my life have had supreme stress and conditions that have just led to exhaustion mental and memory failures pysical problems that obviously didnt happen overnight and now the red blood count in the picture……does that fit in here somewhere?

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Deborah S, Undiagnosed Bio

5 Comments

undiagnosed

 

Hello all,

I do not know where to begin. For many years I have been struggling with these symptoms. I have proximal weakness, intolerance to stress, blood pressure fluctuations, hyperpigmentation, reactive hypoglycemia, sweating, severe dehydration, very bad confusion, vision, memory problems, physical body changes (hump, bruises), carb intolerance, and inability to exercise.

My endocrinologist did a workup for Cushing’s disease and the midnight saliva test was high. She brushed it off as “stress”. I am seeing a doctor now that says I have POTS and Dysautonomia. My doctor says I have inappropriate adrenaline rushes.

My body is falling apart because I haven’t found a doctor who will take my symptoms and test results serious. I would like to talk to others who are having trouble getting diagnosed and also to those who have gotten diagnosed who have a good doctor.

God Bless and Thank You,
Deborah

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