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Mandy, Undiagnosed Bio

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golden-oldie

 

Originally from July 19, 2008

AMANDA M JUNE 2008 – INVESTIGATIONS

Hi, This is my document,which I have sent to the doctors, I thought I’d add it as my bio..

FEB 2005 Constipation, Craving for starchy food, Blocked nose right side and change in shape of right side of nose – flattened cartilage.

END OF AUGUST 2005
Large cyst in left side vulva, 2 x two weeks antibiotics wasn’t resolved operation to drain the cyst.

SEPTEMBER 2005
Swelling of stomach after operation, went to doctors thought IBS was given Fibre gel, stomach distended couldn’t go to the toilet for 10 days a lot of pain and a big thick blistering rash at base of spine.

Nurses visited to give enemas wouldn’t work a lot of pain they refused to continue. A&E – X-rayed showed Impacted faeces , given Movicol which worked, told to eat lots of fruit and veg. Did as advised became impacted again.

Ultra sound of ovaries and Stomach – Couldn’t see as fizzing from laxatives.

OCTOBER / NOVEMBER 2005
Doctor referred to Gastro Doctor McStay – Scheduled for Endocopsy – Confirmed Hiatus Hernia

December 2005 / 2006
New Years eve very down and ill with continuous impaction and other symptoms. Friend said to stay at hers and not to stay on my own as it was New Years Eve. Had a few drinks of rum. Early hours of the morning went to bathroom started sweating – collapsed – came to briefly and was on the floor couldn’t control body – friend came in I was having a fit – had cut my mouth and nose. Went A&E new Years day, they said must have been a one off.

January 2006
Sindosopy – Minor inflammation, slow bowel

Follow up Dr. McStay – Advised to take Mil Par for rest of life

February 2006
Symptoms worse very distressed had spoken to PALS previously as felt so ill to wait for appointments and hadn’t been advised what to do next. I had a phone call from a lady at PALS at home she advised me to see A homeopath and said I had Candida from all antibiotics and gave me contact information for a lady to go and see. I Looked up Candida Diet on the internet and started the diet and also went to my doctors at Southchurch Boulevard and asked for an antifungal. He gave me the tablets and I felt really good whilst on them and on the diet but stopped when I didn’t have anymore tablets left.

March 2006
Homeopath (details given to me by PALS) – said I had systemic Candida and low in vitamin’s and took foods out of my diet intolerances and I started being able to go to the toilet a bit better and felt a bit better as month went on. Although always have a swollen stomach, much improved with diet. Also, the ryvita that I was allowed to eat affected my stomach.

Could only eat plain rice, potato, lean meat, Fish. If I ate wrong food I was ill some times I had bad nausea aswell as distension and constipation and other symptoms. If I ate fat I would have nausea and pain in my right back.

I also started getting a lump in my lip which turned into about 10 blisters and the blisters have gone but the lumps is always there and dries out all the time and it sometimes turns into blisters but never goes.

OCTOBER 2006
Homeopath said I should be okay and to introduce foods I did this and became ill. She advised me that I must have an underlying condition, which is why it wont go and said to go back to doctors.

December 2007
I was very low as I thought I was getting better and kept eating foods which made me ill as I was depressed over Christmas. Then I went to a new Doctor at Cluny Square and explained what was happening. He said possibility of Celiac I had blood tests but not biopsy and the diet was pretty much a Celiac diet. The doctor to have me sent back to Gastro and he will try and help me with investigations.

I went back on the diet. I had also applied for a new career at the NHS as a Trainee Radiotherapist previously as I thought I was getting better and I was given the job which started in February 2007.

March 2007
Dr. Mcstay – said I’d been tested for Celiac but not had biopsy agreed to do tests but said I would have to eat for 5 weeks for biopsy as been doing the diet. They said if I had been on the diet that long I may of healed my gut. I was still trying to eat low carb whilst doing the challenge so ate low carb ( I don’t know if maybe I didn’t eat enough in the 5 weeks to do the damage for celiac.

I started the eating gluten also stopped the Birth Control Pill as I felt too ill to go and get my next pack and thought it may help if I had a break. I had previously been off the pill a few years back and didn’t have a period for 1.5 years and just went back on it.

I was signed off work as too ill for the whole 5 weeks. My symptoms were much worse this time during the eating for the test. Also doctor said my thyroid was a bit low.

APRIL / MAY 2007
I returned to work had been back on my diet for a week – My results came through and it tested negative for celiac. I was very stressed as I still didn’t know what was wrong.

I spoke to a dietitn at work and she agreed to try and help – she put me on a anti yeast diet (still eating wheat etc )and said to ask for antifungal from doctor but doctor couldn’t give me a very long course it didn’t make much difference. She then advised me to eat normally maybe I was malnourished from diet and I just got worse and worse and my skin had started changing like it was dehydrated, shrivelled up like crepe paper and thin. I was eating chocolate as was down and was very nauseous after but felt like giving up as was so ill so kept eating wrong foods .

JUNE 2007
I was very ill eating foods that made me ill. Still off the pill. There had been stress at my family my Dad had left. I left work early as stomach hurt and was very nauseous went home and decided to try a antidepressant 20 mg Prozac on the Friday. There was a big row with Parents on the Saturday, I wasn’t really with it as on the tablets. On the Sunday night I woke up with a very bad headache like pressure in my head and nose I felt very strange I don’t know what happened but I wasn’t with it at all.

My face, neck, arm, back of hamstring around my bottom on the right side had changed. I had bad dioreah for a good week may be it was the shock – I lost quite a few pounds very fast as everything went straight through me. My skin Pale, clammy.

On the Monday I saw Dr. Palacian who advised me to stop the tablets I may have had a reaction (HE SAID I COULD STILL BE CELIAC). I became a lot more anxious and depressed following this as I was scared of what had happened and my family were caught up in there problems and didn’t realise what was going on. I couldn’t stand being at home as was getting panic attacks as it happened in my house so I stayed with my Nan. She was very shocked as I was so thin, I had a black mark down my right side of face a rash also on my face which she has a photo of .

JULY 2007
Occupational health referred me to Physiatrist and I explained what had happened. She advised me I didn’t have a mental problem although I was depressed due to what was happening. She advised me to see Endocrine and Dermatology as she said the mark across my face was a sign of autoimmune disease.

I was desperate to get better and back to work so I borrowed money to private to endocrine. I had blood tests and then after was followed up at southend hospital and the specialist said he had spoken to doctor Adey and I was depressed and nothing on the blood tests.

I then requested an Ultra sound as I had read about PCOS and it did show cysts on both ovaries but nothing on the blood tests prior to this.

(Previous doctor) Dr. Adey said I may have lock jaw but no one said anything about my neck or other limb problems.

DR.MARVRA
I decided to pay to go to a Neurologist as I was so desperate and knew Bells Palsy doesn’t affect one side of my body. I did think I had a stroke. Neurologist advised I needed Pituitary MRI, Parathyroid and various other tests. She said my reflexes were absent and told me to stop doing the diet as it may affect the testing but I couldn’t function without this diet. ( I had been eating wheat etc running up to seeing Dr. Marvra)

AUGUST 2007
Nerve Conduction Test – Normal – was on diet

Follow UP SEPTEMBER 2007
Dr. Banister -Neurology

I had to explain again from the start – I had been on the diet again and this time had reflexes. She said probably a bit of bells palsy, didn’t know what was wrong with my neck or limbs on right side. She also to refer me to Charring Cross for Fibromylagia but Doctor Adey wouldn’t refer me. She sent me to a Physio for bells palsy but it didn’t help.

SEPTEMBER 2007
Dermatology – Basildon Hospital I didn’t get to explain anything he quickly examined me and said no cancer and sent me on my way.

OCTOBER 2007
I became very depressed scared suicidal and was admitted to Basildon Hospital for one night and then referred to Taylor Centre. I tried to work with them as I know I am depressed and I am still down but not suicidal now. I was too scared to take antidepressant they wanted me to take as I was previously advised I could have had a reaction to the tablet and didn’t want anything else to happen. I tried the antidepressant Effofor, but it made my anxiety very bad and I was worried about what happened last time so I stopped it.

NOVEMBER 2007
Referred to Gene for PCOS – I was still very emotional as ill, kept eating foods as depressed, and very upset about my face neck and right side as not been diagnosed. I didn’t communicate very well with GYNE because of the state I was in. I asked about Metiformin as I had read this is to do with PCOS but was advised I had to be very fat or want to have a baby. No periods for the last 6 months.

I saw Occupational Health again and was advised to change doctors. I had asked Doctor Adey many times to refer me to chronic fatigue and did receive a letter confirming that he would but he never followed it up. So I decided to change doctors as I was getting worse and was closer to loosing my new job and felt even worse than before.

JANUARY 2008
Dr. Syed agreed to start from scratch and sent me for blood tests which showed high cholesterol. I was much more positive again. I also decided to see a chiropractioner as my neck was hurting all the time cant hold my head up properly and my bottom / leg was flat when I walked and ached with any resistance walking.

Chiropractioner said I had a wry neck, facial drooping, and weakness and said I should have a brain scan and also mentioned Carotid Arteries but he wouldn’t touch me he said something going on may be neurological. He wrote me a letter to take to dr. Syed. It also mentioned having a breast examination as I have implants and the right side has shrunk and aches when I lay on that side.

Dr. Syed referred for all Specialists.

Breast Ultra sound – implant looked fine but change in fat in breast, shrunk on right side and skin droopy.

Neurologist – Referred – back to Dr. Marvra

Dr. Marvra had the letter and it did say I was misdiagnosed with Bells Palsy – I didn’t get to explain anything Dr. Marvra said I don’t need brain scan you have too many symptoms which don’t relate to my department but she said she would send me to a Rheumatologist.

APRIL 2008
I was referred to Dr. Nuduka – Facial Reconstruction Surgeon for Bells Palsy only Specialist in the UK. He said he doesn’t think it was Bells Palsy and mentioned having a EEG but this was not mentioned to Dr. Syed in the letter.

APRIL 2008
Dentist couldn’t perform root canal as couldn’t open my mouth wide enough – x-rayed my jaw and said its in a spasm – sent me to Oral Surgeon

Dr. Sha Oral surgery
He was very nice and asked about my other symptoms. He said it sounds like you have a few things going on, which is why so many symptoms he said he wanted me to have a brain scan and some blood tests.

I was able to tell him every symptom, which I felt stupid telling other consultants. He said I don’t have bells palsy, I have facial, neck and limb weakness and it will get better. He also said I have some TMJ and gave me some 10 mg of Nortipline to help me sleep as my mouth is in shreds from biting gums. He said he will make me a gum shield. He tried to run a tests for (cushings syndrome / possibly food induced) as he said my skin has atrophied and is thin and fragile with bruising along with other relevant symptoms.

Follow up with Dr. Sha – My brain scan showed a cyst in the right side of my sinus in the area of the facial weakness he didn’t think this was the cause of my right sided weakness. Dr. Sha ordered blood tests for Cortisol to investigate Cushing’s Syndrome but the Sythechen test couldn’t be performed as it had to be requested via Endocrine.

Dr. Sha said he needs me to have a second opinion but I must tell the Consultant everything I told him as it was all important.

Rheumatology
This consultant was running an hour late I wasn’t allowed to explain anything. The consultant just said I am a Rheumatologist have you any swollen joints. The consultant couldn’t explain my neck and said about physo but I had tried this and it never has got better. A nurse came in asking about my periods due to results of urine sample but she was told to leave, I never heard anymore about that. I was upset and the reception said its probably as she is running late in her clinic.

Follow Up Oral Surgery
I then had my Follow up in Oral Surgery with a Consultant. My Dad came with me. There was nurses and doctors in and out of the room using the photocopier which was very off putting and I didn’t feel like the consultant had much time as he said to keep it short. He didn’t acknowledge my facial weakness or my neck and he said I am not saying nothing wrong but I don’t know what’s wrong. They didn’t carry out the Cushing Test.

JUNE 2008
I am currently being referred to a specialist in the Parry Romberg Syndrome, which I stumbled across whilst trying to help my self. I wrote to the specialist after contacting the PRS support group. He agreed to see me based on my symptoms and Cathy Rehill at my doctors has organised this referral.

I am struggling with the constant awkward feeling of my neck as it has no strength on the right side, I cant lift anything above my head as it locks into a more rigid spasm and also affects my shoulder.

I am back on the celiac diet as I ant function otherwise due to the many symptoms I get. I am struggling with the diet as I have other intolerances other than the celiac diet, sugar, yeast, dairy, fermented foods. I do have a letter from Mary McStay confirming that you can only have systemic Candida if you have an celiac, or other autoimmune disease and if immune compromised.

I am naturally worried about the diet I am doing as fruit is very important with diet but I then suffer the faecal impaction. I am now also concerned that maybe where I have been on and off the diet it has affected the tests that I have had but I can feel that I am damaging my body further every time I eat the foods that affect me. It is very difficult to stick to such a rigid diet especially when I am struggling to get around some days and have difficulty getting to supermarkets.

I am very upset about the affect this illness has had on my appearance, my skin is so dry dehydrated, loss of skin elasticity, facial drooping, twisted neck, hollow eye, wasting on nose, general loss of muscle tone all over , flattened buttocks, bloating all the time. I am hoping this will improve once I know what’s wrong and when I am treated.

The palms of my hands keep shrivelling up, drying out and going tight and then the skin flakes on and off throughout every day and this is really worrying me also. Along with the pain in the right side of my back. My skin has got so thin that when I rest my elbows on a table for a couple of minutes they really hurt and go bright red and look like I’ve fallen over. I have marks on my arms which are months old from blood tests, spots and cuts that don’t heal.

I also just went back to the ladies clinic for a second biopsy as they found HPV virus last year. They advised me that I still have this infection and normally the body gets rid of it but my immune system must be compromised as its still there. I have got to go back in 6 months for another check up.

When I eat wrong I have also noticed that my body seems to be swollen like I have water retention and my face and eyes are very puffy. I can also feel the weakness / wasting a lot more if I’ve eaten wrong. I have no quality of life, I don’t go anywhere as don’t feel up to it or due to restricted diet and not able to drink alcohol, I cant go to the gym like I did due to the weakness or wasting in my right leg neck and arm. Fatigued and never feel well, I have no libido or sensitivity at all and I still have no period.

My Parents are now being very supportive as they are concerned about my health and recent deterioration, which has given me the strength to try and stay positive that I will get to the bottom of this. I do appreciate the help I have had from doctors and specialists but it is frustrating as I seem to have a complex illness or maybe something rare, which is making this difficult to diagnose. I have been very patient and I have done everything I’ve been advised to do but this has gone on to long and I cant live like this much longer.

Thank you for support and for reading this document. I hope it makes it easier to understand what’s going on and why I am so upset when I visit the doctor.

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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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Heather (HeatherKY), Pituitary Bio

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golden-oldie

 

From Monday, February 2, 2009

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

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