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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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Amee (Amee), Adrenal / Pituitary Bio

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adrenal_glands
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?

Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.

Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.

Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.

Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.

June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)

Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )

Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).

Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.

Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.

In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.

Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.

That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!

Thanks for reading & welcome to my world : /

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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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MSU Docs Help Local Teen with Rare Disease

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A team of MSU doctors has helped a Leslie teen overcome a rare disease of the pituitary gland.

19-year-old Sydney Kandell was diagnosed with Cushing disease about a year ago. Doctors say the disease is often mistaken for obesity.

Kandell gained 100 pounds during her senior year in high school. She struggled with headaches, high blood pressure, acne, and dark stretchmarks. Her face also appeared very round. Kandell knew something was very wrong. “I was very depressed. It was very upsetting because I went to the doctor multiple times about my weight gain, and acne, and they all said the same thing, ‘Write a food journal, exercise more, it will solve all your problems.'”

But a visit to the Emergency Room for an intense headache, lead Kandell to a MSU Resident Physician who recognized Kandell’s symptoms. Dr. Tiffany Burns said, “I was very sure that she had Cushing disease. We ruled out the more common things. Cushing disease is very uncommon. We ruled out the uncommon things first, but once we got to testing her urine for the steroid level, that’s when I knew I had to call Dr. Aldasouqi.”

Dr. Saleh Aldasouqi, a senior endocrinologist at MSU confirmed Burn’s diagnoses. “I rushed to MRI because I had a strong belief and a gut feeling that she has a pituitary tumor and perhaps a big pituitary tumor. Usually these tumors that cause Cushing disease are small in the pituitary and they are very difficult to detect. Her tumor was big.”

A neurologist removed the tumor a few weeks later. Kandell now controls the disease with cortisol. She’s lost 60 pounds and is thankful someone listened. “I can’t even explain how that felt in words how that felt to have an answer.”

Kandell has a tattoo on her wrist as a reminder of her journey with Cushing disease. She is very passionate about spreading the word about the disease often mistaken for obesity. She plans to go to medical school to study endocrinology.

Cushing disease is caused by small benign tumors in the pituitary gland that increase levels of the hormone cortisol.  The disease and growths can go undetected.  Doctors say the disease can be mistaken for depression or obesity in its early stages.

Symptoms Include: Weight gain, fatty deposit between the shoulders (buffalo hump), pink or purple stretch marks, Thinning fragile skin that bruises easily, acne.  Women may experience irregular menstrual periods, thicker or more visible body and facial hair.

From WILX.com

Andrea P, Steroid-Induced Cushing’s

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What can you do when the cure might be worse than the disease?

“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”

How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.

What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.

For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.

Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.

I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.

No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.

andrea-fShe left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.

By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.

I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”

At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.

I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.

On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.

Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.

With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.

Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.

Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.

Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).

I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.

The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.

For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.

My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.

I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.

Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!

I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.

Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.

I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!

Article reposted with consent of the author from Have Faith: Cushing’s Syndrome

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Amanda, Undiagnosed Bio

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golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

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