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Jenny, Undiagnosed Bio

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golden-oldie

 

Originally from December 31, 2007:

My doctor referred me to an Endo and my appointment in at the end of January 2008.

From all the posts I have seen on this site, it appears that this is going to be a long process…I am hopeful to find a doctor that will take my symptoms serious enough to get the proper testing done quickly.

Can anyone please help me by tellimg me what test I should ask to have done at my appointment. Your suggestions are appreciated. THANKS!

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MizBellaTru, Undiagnosed bio

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golden-oldie

A Golden Oldie from August 12, 2007

I’m a 48-year old female who has had an awful lot of illness over the past 12 years and starting to wonder if there could be some connection to all of it even though my doctors don’t think there is. They just think I’m one of those unlucky souls who just is sick alot and doesn’t have very good genes.

Here’s what I can tell you about me health-wise:

In 96 I had to have my colon removed due to Ulcerative Colitis. This resulted in 3 surgeries.

In 97 I developed Iritis (inflammation of the eye) and one of the docs said that because I no longer have a colon and have an auto-immune disorder that now my whacked out immune systems has started attacking my eyes. I’m in remission currently but this will be something I’ll have to deal with for the rest of my life.

Things were fairly quiet for a few years with the exception of having Iritis flare-ups and don’t remember anything else going on until 2000 when I broke my left ankle (badly) and now have a steel plate with 11 bolts holding my ankle together. (This happened in 2000 and I still have problems with that ankle).

In 2001 I was diagnosed with Diabetes. This had run in my family (my great-grandmother had been diabetic and I had been borderline diabetic as a child). I started out taking oral medications but after a couple of years this wasn’t enough and it resulted in me being on insulin now for the past 3 years. (Sugars still aren’t under control).

Also in 2001 I had some kind of seizure. Was taken to the hospital and after a lot of blood tests they thought it might be due to a calcium deficiency and recommended I go see an Endo. However, when I wen to see an endo he didn’t think my calcium was deficient enough to cause what had happened and recommended I go see a neurologist. The neurologist thought it was some kind of seizure too and ran some preliminary tests on me but he wouldn’t return any calls for me to find out what other tests should be run. I gave up on him and still never had an answer about what had caused this very weird episode. (What had happened was that I had been at work and all of a sudden my jaw started to tighten up and my head cocked to the side and I started making all these weird grimaces. My mouth became locked up so could barely get any words out. I couldn’t turn my head – it was as if it was locked in place. This is what led the ER (after running blood tests) to determine that they thought my reaction was due to low calcium. To get my rigidity to loosen up, they gave me several shots (can’t remember now what it was) but it finally had allowed my body to loosen up enough that I could finally leave the hospital. This event lasted several hours and moved in to my arms where they became so rigid that it felt like someone was turning my arms inside out. I was completely exhausted after that had happened.

As time went on I would have periodic episodes of what was thought to be a seizure and I just started to learn to live with it. Sometimes only my face was affected and sometimes my whole body would become very rigid and after several hours these episodes would pass but I was always left feeling completely worn out.

Throughout all this time my Diabetes has been almost impossible to get it under control. My insulin doses would be increased but I never could get my sugars to stabilize.

In the spring of 2006 I developed some type of wound on the top of my left foot. It spread and ulcerated and I went to several types of doctors and a couple of them thought it might have been a spider bite of some kind and due to the diabetes it wasn’t healing. I was put on various types of strong antibiotics but nothing was helping. I finally was referred to an infectious disease expert and he said I had some type of serious strain of staph infection and he finally was able to get me on an antibiotic that started to help me heal. I’m now left with some horrible scarring on my left foot but at least I didn’t lose my foot which is what I thought might happen.

In August of 2006 I developed Bells Palsey on the left side of my face. I went to a neurologist (different one from the one I had gone to for my “seizure”). He was the one who diagnosed me with Bells. In the process of seeing him I had one of those episodes in his office and he watched me very closely as it evolved and told me that he thought I had a form of “Dystonia” which is a movement disorder. After a couple of months my Bells resolved although I do have some permanent nerve damage in my face which affects how I smile but it seems to only be really noticeable to me.

In late fall of 2006 I noticed my right ear was hurting quite a bit and was draining. I went to this ear doc and she determined I had a ruptured eardrum with a huge hole that might require surgery. She also determined (after some tests) that I had an infection in the mastoid and said it was imperative that I not let any water get in my ear so that the ear could dry out enough and the infection to clear up before I have surgery. She said it could take a couple months before my ear might be dry enough and told me to come back in a couple of months. During that first visit she also did a hearing test on both ears to establish a baseline. I came back to see her in Jan 2007. When she looked at my ear she said it looked like the eardrum was starting to show some signs it was trying to heal itself (because originally she thought the hole was too big for it to ever heal on its own). She told me to give it some more time and come back again in a couple of months. I came back to see her in April 2007 and the hole was still showing some progress in trying to repair itself so she said she didn’t want to operate if my body could heal the hole. In June of 2007 my left ear started producing a very high pitched ringing sound. I’m not talking a little ringing sound but a sound loud enough it kept me up at night. I had noticed my hearing had diminshed quite a bit in that left ear. I then developed some dizziness and a sense of fullness in my left ear and noticed that when the barometric pressure changed my head felt like it was going to explode. When I went back again to the ear doc she surmised that she thought I now had developed Menieres. She put me on a diuretic and a steroid as this is supposed to help with Menieres but it didn’t seem to do a thing for me. The ear doc ran another hearing test and found that my hearing in my left ear had diminished since it was first baselined last December.

So, a little over a week ago my right ear (the one with the perforated eardrum) started hurting quite a bit and the ear started draining. Again I went back to the ear doc and she determined I had a sinus infection and an ear infection so she put me on an oral antibiotic and antibiotic ear-drops. It’s been a full 7 or 8 days on this antibiotic treatment and my hearing in my right ear has diminshed considerably to where I can hardly hear a persons’ voice on the phone. I’m to stay on this present course of antibiotics for another week. In the past I’ve always responded to antibiotics but it doesn’t seem to be helping this time. My right ear has been draining for a whole week and it’s never done that before.

Also I want to point out that I gained a lot of weight over the last 15 years and I’m now about 120 lbs overweight. I gained 12 of those pounds in just less than 2 weeks recently and my eating hasn’t changed. This is what made me start looking on the internet about rapid weight gain when I came across Cushings and started wondering if I could have this.

At this time I’m waiting on some results from a urine test to see if I’m starting to have a problem with my kidneys because I’m dealing with a lot of edema lately. I don’t know if all the problems I’m having such as the poor wound healing, edema, diabetes, developing high blood pressure are all separate things or more related to my Diabetes.

So at this time I can’t claim that I’m a “cushie” because that’s not been identified yet but I’m thinking that I should get tested for it.

Anyway, that’s what’s going on with me right now.

Thank you for reading this very long bio.

MizBellaTru

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Ryley (Sunshine), Possible Adrenal Bio

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golden-oldie

 

A Golden Oldie originally from Monday, November 17, 2008

I am currently in diagnosis – Finally got fed up and met with an endo. who is wonderful – she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do – go look up symptoms on line.

I have ALL of the sympoms for a Cushie – from the over emotional bit to the hump – Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.

I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don’t know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.

All of your posts have been extremely helpful to me and are helping me to bolster my spirits. It is heartening to know that I am not a crazy person and that there are support systems out there for us. I will write again when I get a diagnosis – Hoping for the best!!
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In Memory: Bonny Hamm, October 12, 2009

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in-memory

 

I did not know Bonny personally but she was an Australian  member of the Cushing’s Help message boards who rarely posted.  Her In Memory page on the boards is here: http://cushings.invisionzone.com/index.php?/topic/43923-rip-bonny/

She was only 45 at the time of her death October 12, 2009.  I’ve known far too many Cushies who have died far too young from this disease.

Bonnie’s Avatar

Bonny wrote July 1, 2009

I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumour… on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don’t know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.

As a single parent, (divorced), life is very hard with Cushings as you don’t have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.

Before and after Cushings

Before and after Cushing’s pictures.

Rest in peace, Bonny!

Beth said it best on Facebook

(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

Rita (Rita), Steroid-Induced Bio

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Hello to those who are frustrated & suffering!

My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.

My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.

I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.

I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.

I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.

Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.

I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.

During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.

I was extremely depressed and felt like I was dying!!!

April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.

This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)

He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.

I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.

Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.

If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j

Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!

Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!

Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!

Thank you kindly for reading my story,
Rita in New Jersey

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Pauline, Undiagnosed Bio

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Hello all
I’ve only just been referred this week to go see an endo so very much at the start of what I think will be a long journey.

I don’t seem to be a typical case of Cushings although I have “the hump” and some slow weight gain which is are the things that have gotten me referred.

Over the past umpteen years I’ve been going to the doctor with all manner of debilitating symptoms (mainly fatigue) and 15 years got diagnosed as B12 deficient and put on injections for it. Then after about 7 years I had to go back as symptoms worsening and was diagnosed as Folic acid deficient. Saw an improvement on taking the tablets but after a year was back to being utterly exhausted, waking at 3/4am every morning, aching everywhere in my body and multiple other symptoms that came and went. After pushing at the docs was diagnosed as low ferritin and put on iron tablets.

Over the next 2 years and ever increasing doses of iron we still couldn’t get my ferritin raised and I had started logging when I felt utterly gubbed and it seemed to be happening anything from immediately after getting my B12 injection to a few weeks after. Because it wasn’t easily definable as related to the injections, doctor didn’t want to make any association but it got to the point where I refused to get any more injections as I couldn’t face the 6 weeks of misery I knew would come after it so he agreed to put me on B12 tablets instead. And low and behold my ferritin started rising and I started feeling better. Luckily I was able to absorb the B12 orally as not everyone can do that. Almost all my symptoms disappeared except the sparse fluctuating periods, some vision problems and my reaction to eating sugar/carb food (Ok, I’ll admit it – biscuits) as I fall asleep at my desk sometimes directly related to what I’ve just eaten.

I believe a lot of what I was experiencing was down to my low ferritin and I’m actually feeling very good just now – but, since my blood has improved I’ve been slowly putting on weight around my middle (I only eat about 1400 calories a day so couldn’t understand it) and I’ve now got hump, and fine blond hair growing on my face. I’m 50 so doc had previously presumed I was just menopausal and that was what had stopped my periods but after 8 months one appeared. I had previously shown my hump to another doctor last year when I was there for back pain but was just told to sit up straighter at my desk. On showing my present doc the hump he said immediately he was going to send me to and endo.

So, I’m not sure what the outcome will be. I don’t seem to be a typical cushi as I don’t have a moon face and my weight gain has only been gradual and I actually feel fine. It was only at my partners insistence that I went to the doc as he kept saying my hump was getting bigger.

Does anyone have any advice on what I need to ask/say when I eventually see my endo?

Thanks
Pauline

ps, sorry, forgot to mention that I was only born with one kidney and also had an ovary removed due to a cyst.

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Shon (Shon), Undiagnosed Bio

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golden-oldie

 

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.

Below I’ll list my symptoms.

Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.

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