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hi I'm new and confused

hi everyone, I am here to find out a bit more about Cushing Disease I am currently waiting to see a specialist Endocrinologist to see whats going on with my crazy body Have been waiting 5 long weeks so far, one week to go. It is so scary waiting to find out what they will do and say. Let me take you back to last year, I married my Husband in October 2009 and ever since that day I have felt unwell. Lost weight which worried me as I have always been a slim lady, and been feeling so tired and un

happymish

happymish

My first Blog

Hi everyone.   My name is Alicia, I live in Harriburg,PA. Starting from high school I struggled to understand feeling strange, bruising easily,and many other symptoms. I broke my hip when I was 20 in 2003. Which the doctors could not explain. then in 2004 I had a lost a pregnancy. Not to mention the fact that I had went from 140 pounds to 215 ponds. I kept going to the doctors and getting no where. I would be in the ER constantly. One day after leaving my PCP I went to my mom and was crying

alicia26

alicia26

Dxed ACROMEGALY/the trail

I discovered the trail of Acromegaly on my body...I have been Dxed with and Surgery for: Carparal Tunnel Syndrome- surgery both hands Heel Spurs Dental problems-rebuild bridges TMJ both sides Backaches Ring size changed 3 times Grew 1+ Inches in height 1/2 shoe size up 4-5 dress sizes up Tonsilictomy-enlarged tonsils Hemmeroids and surgery Cysts- Ovarian and Gangoloin- Surgery Hat sized up Tennis Elbow Hip Pain 3 Ceserean Births- did not dialate Emergency surgery on foot- MRSA

LilDickens

LilDickens

sore, tight chest - anyone get this?

Hi all, my MRI is tomorrow yay. Don't see the specialist till the 22nd though. Can anyone help me? I have a sore chest. I went to the doctors and I had a chest x-ray, but nothing showed. Now my chest is tight. It's not hard to breath, just anoying. It becomes harder to breath when lying down though. I get lumps on my ribs and they hurt. Doctor said they were probably calcium build ups. Does anyone get this? Not sure if i should go back? Toni   p.s i tried using ventolin, doesnt work

toeknee

toeknee

CRH Test

MY RESULTS: ACTH base 33 H 49H 47H 53 61H 97 72 70   I have no range to go by.   Cortisol 25.3 base High ( 10-25) 21.3 25.4 27.6 29.1 30.3 32.4 31.2     (The measure is 50% increase in ACTH after CRH and 20% increase in cortisol - my comment)   Corticotropin-releasing hormone (CRH), the hypothalamic peptide which stimulates ACTH release from the pituitary gland, has been available for investigational use for nearly a decade. The formulation of greatest clinical utility,

LilDickens

LilDickens

Monday 22, Feb 2010

Best night so far last night. took lorazepam and ibprofen and slept the most i have so far. Had a 2 and half hour nap today also. Wonderful feeling to sleep. so i guess i am ready and possibly on my way UP...?   Just had to share the good news.    

Marisa

Marisa

Sunday Feb 21, 2010

Well i am taking 20mg hydro in the AM and 15 hydro in the evening now. So far so good. taking ibuprofen for stiffness and soreness, and lorazepam to rest. I was taking some hydrocodone for pain but honestly, it makes me feel worse than why i am taking it. Ibuprofen does just fine. I still get dried out alot, needs lots to drink. My bp is great, and pulse is now staying under 100. Still having issues with blood sugar but will work on that next. I slept well last night, despite the soreness

Marisa

Marisa

is this cushings? need help

Hi all, my name is Toni. I will try to keep this short. I need some help. I have been sick for a while and am yet to be diagnosed. I am waiting to see the specialist. I have already seen a tummy specialist and he had refered me to the hormone specialist. Here are my symptoms: Blood test 2 times = high cortisol (normal 100-120 mine was 1068 and 2nd time 986) - aching muscles all the time, but worse at night - tired all the time and muscles feel weak - sore chest, have had chest xray,

toeknee

toeknee

Thursday 18th Feb 2010

Well last night was a terror. I could not sleep all night, and had pains that I guess were from not enough hydro. Although I did keep check on my bp and it was fine. today i took lorazepam and had a couple of naps.     Trying to keep from getting sore....sometimes I wonder if I am healing or not?   Is it my not being patient again????     Going crazy here..

Marisa

Marisa

Pain went away!

Well, its been two weeks on Fri., Feb. 19 since pituitary surgery... and I have to rejoice that I am virtually pain free! My last blog complained about muscle and joint pain... And, since my surgery on Feb. 5, I have had NO muscle or joint pain to speak of (other than the typical pain associated in the head and nose after transphenoidal surgery). I can only explain this as perhaps the hydrocortisone I am taking 4x a day, or maybe the adjustment of the hormone levels? Anyhow, my first appt. with

Dannett

Dannett

Feb 17, 2010

Well so far so good I think. I did notice something special today! From the cushings I had a very red neck and chest, like a v-shape, before I knew it was cushings I thought it was a sunburn. Well guess what!!! It's gone! My skin is all the same color now. I was so shocked and happy. Yes I know it is one little symptom of cushings but its gone. I have lots of pains in my muscles in my chest, from coughing and possibly picking up stuff I should not. But I had this prior to surgery but its wor

Marisa

Marisa

Post Op 02-14-2010

I'm back. Glad the surgery is behind me. The surgeon looked like he was so happy to know he did a good job. ? He was proud of himself.   Was in intensive care from 2-9 to 2-11 then moved that evening to a regular room, then the surgeon comes in late that night and asks if I want to go home. Yes of course. So I was out three hours later. NO wheelchair either, I had to walk to the car right out of the hospital.   Today is Sunday, last night I started having a fever, I know I have to stress

Marisa

Marisa

Surgery Recovery Journal 1/2010

Facing Life Objectively:   DxedCushings with Acromegaly Nov 09 Surgery on Pit tumor Jan 28, 2010 Endocscopical ( no packing)   Recovery: Day 6 : Feeling lighter, like breathing better Sleep better Hemmorroids disappeared Vaginal area tightened Tongue decreasing in size Normal Bowel movements Can sleep on side where pain use to be Can get up from a squat stiffiness going away Diziness gone Feet stopped being sweaty Lost 4-5 lbs!   Stuffy nose Lack of taste   Day 14 Sam

LilDickens

LilDickens

Got a pre op date

They called me back, and schedule another pre op for Feb 8th. So I go there and stay there until the next day for surgery. I hope that nothing spoils it this time. I kept them up to date on what changes were happening to me and they never said anything. I hope the high and low bp wont affect things and the ekg, I had last time they didnt like so they gave me an echo, and I am guessing everything is fine to go. At least it was back then.   Hopefully it will be again.

Marisa

Marisa

Monday morning woes....

Well thought about it this past weekend about my pre op I had done on Dec 17th. Surgery originally scheduled for Jan 6th, but was messed up by the hospital oversight in no putting my name on the list for surgery that day. I had to go back home. New date for surgery is Feb 9th, next Tuesday....so I call the surgeons office and ask if the date of Dec 17th pre op was ok for a Feb 9th surgery. OH NO she says, certainly not. Well why didnt anyone reschedule me?????? Did they forget I exist???? Such

Marisa

Marisa

Dissappointed in Dr.s and their Assistants

When I got home yesterday from work, I had a message on my phone from the surgeons assistant. First of all over a week ago I emailed the asst. with info on my crazy bp and blood sugar number...I had a few questions and never got a reply.   This past Wednesday I called and asked to speak to the same assistant I email and they gave her my message which was: I wanted to know what the medic alert bracelet is supposed to say. Next I wanted to know where to obtain the emergency kit with hydro, or

Marisa

Marisa

4 ways to DX Cushings

MaryO posted this the other day. Very interesting and may be helpful for you to bring to the doc.   4 Ways to Diagnose Cushing's Syndrome     1. Common Signs A physical exam is often the first step in a diagnosis of Cushing's syndrome. Several physical signs indicate the syndrome. Your doctor will look for a hump in your back between the shoulders. People with Cushing's syndrome often have a rounded face, and they may have excess facial hair. The face may also be flushed or have purple mar

LilDickens

LilDickens

TGIF

Well it's Friday today. I have one more week of work to go and a Monday before my surgery. Friday's are the most difficult, as all week I never get the sleep I need, and this morning I had a bad sinus headache. Had to stand in the hottest shower I could tolerate and make my headache go away. The changes in temperature here in Florida this year is so varied, everyone is having allergies and sinus problems as well as upper respiratory infections. I go around and spray our offices in our department

Marisa

Marisa

Surgery went well! Jan 28, 2010

Hi All!   Yes, I am sitting up in my room at 4 oclock in the morning hungery ( so I ordered a snack!) I got a real big delicious turkey sandwich and a side of applesauce. I am in heaven!   Surgery went really well. I had a long wait in the pre-op, from 7:30 am until my actual surgery at noon. I then had difficulties after surgery; they forgot to give me anti-nausea medication, and I was sick and flinging around ( I dont remember) and cut my hand. I wonder if this could have been a cortisol

LilDickens

LilDickens

Thursdays

I have to go to work everyday because I have to build up my time for time off for my surgery. I will still have to take Family Leave Medical Act for my time off as it will be without pay. But I will still have a job to come back to. Mondays are bad enough, but I have gained a bit of strength during the weekend when I get to take a little nap in the daytime. Nights are horrible as the cortisol levels are so high I wake up every hour on the hour or half hour, and get no rest.   By the time Thu

Marisa

Marisa

Found my PCP

Called around and found my primary care physician. She is originally from Burma and is interested in Cushings. I met with her and showed her all my results and explained about the surgery date of Feb 9th, and that I will need assistance in weaning off the steroids. She was eager to learn about Cushings. She said she took her exam a few months ago, to renew her license, and they had many questions about Cushings on the exam. She said she was very interested and would learn a lot from me. Well nee

Marisa

Marisa

My Bio for starters

Well I am a 52 year old female. I have had problems all my life from not having but 3 periods a year, difficulty getting pregnant, I do have two sons, ages 29 and 19. In between them I had 3 miscarriages. The 19 year old was a twin and one did not make it. Early in the pregnancy the twin's heartbeat stopped.   The doctors tried clomid which did nothing. I was told I was overweight, needed to lose, but I was not overweight. It was suggested I see a dietitian which I did and she put me on a 120

Marisa

Marisa

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