Hi there all....i am in need of messages....love meeting new people...especially those who can identify with addisons disease....feel free to ask me anything...perhaps i have some information for you....or message just to chat....hope to meet you soon!Hi Somethingelsejr
I’m new here as well and I have secondary adrenal insufficiency. Mine was caused by a biopsy clip made of stainless steel and nickel. It was in me for 5 years and I am highly allergic to nickel. My doctor says that the nickel infiltrated my tissues and organs and it is causing me problems. I worry because I’m high risk for breast and ovarian cancers as well as other cancers. I have started chelating to see if I can get the nickel out of my system. Do you know what caused your disease?
Sharon
Kasha were the shots for pain steroids? I was just reading that sometimes cancers can be caused by a fungal infection. If you have one and you take steroids it might be necessary but it is like pouring gas on a fire so says Dr. Shoemaker. Anyway thought I’d throw in my $.02.
Hugs
Sharon
Hello somthingelsejr
I am new here too, I have not been diagnosed yet…hopefully soon. I just started going to MD Anderson. On top of everything else that so far no one has been able to diagnose, I have lymphoma. Been sick and tired for a long time. Although when i got out of the hospital in july 07, i started pain magmt, geting shots till they got the pain under control, and was on maintenance injections. My last injection was in august, and now because of the cancer are holding off till everything is straightened out. I have been wondering if the shots have helped me, cause down I’m on a down hill ride.
How long have you had addisons, how long did it take for them to find it, and how are you doing now?
Kasha
Hi Sharon
Yes, they were pain injections, i am not sure what was in the injection, but i am sure it was a steriod. How would i know if i have a fungal infection, i never run a fever, in fact it is the opposite, usually in low 97’s.
I went to MDA last week, I am not so sure the cancer doc is reseptive to me telling him what i think. i especially tried not to sound like i was telling him what to do, just what i have learned. I thought about mentioning the biotoxin info that i received from you but didn’t when i got the feeling he did not appreciate it. When i mentioned the low cortisol and acth he said he would consult an endo but he could give me stress shots and go on with chemo. i really hope i am reading this guy wrong cause this is not what i want.
I haven’t seen too many post here about symptoms, test and results i was hoping to compare some information, am i not looking in the right place? i joined the cushings site before this site, someone there reffered me here. I guess what i getting at is i am not sure what is wrong with me, even though i do know i am insufficeint. i am so confussed, because right now i am nowhere near as sick as i was. But i also am not well, there is still something wrong. I used to lay ceramic tile for a living and was quite strong and now i can even walk down the hill to the water and back without getting scared getting close to the top and am dizzy and can’t breath. it’s only about 150 feet, with a pretty good slope, i just do not understand.
Oh well it is in God’s hands at this point, and i just have accept his decision and deal with it the best i can.
Didn’t mean to go off in never never land, just got caught up, again.
Kasha
I was diagnosed with Addison’s in Feb., 2007 after 11 days already in the
hospital. I was so weak and everytime I would try to raise my head to get up, I would pass out. They started me on 30 mg. of hydrocortisone and 0.1
mg. of Florinef, along with glucose and other IV’s.
I have yet to recover. I am so dizzy and weak that I can not drive, therefore,
I can not work as I am an insurance broker and that does require a lot
of travel. I have another agent working my accounts, but that means
I have to split commisions with her. I have thought about applying for
disability, but I hear it is difficult to win. Also, I have been sleepwalking
at lest 3-4 nights per week. I am now diagnosed with Narcolepsy.
My blood levels have been dangerously low, and my dr. said that he was
surprised that my heart had not failed.
Does anyone have any suggestions to feeling better? I am sick and tired of
being sick!!!
Brennie the first thing I would do is check to see if you have a biotoxin disease as I did. Most doctors don’t know to check for this as they are not given the information. Biotoxin disease can come from many different places but two most common in this country I believe are from lyme disease and mold exposure from water damaged buildings. My biotoxin disease came from a medical procedure and a stainless steel clip they put in my breast made partially from nickel which I was allergic to.
If interested it’s a five minute test at either this website www.biotoxin.info or this one www.chronicneurotoxins.com
I am in my second month of treatment and I am completely off the hydrocortisone as my treatment has been successful. Good luck and let me know what you find out.
Sharon
Thanks for the info----- I do have hystoplasmosis from bird droppings.
I will check into your suggestion.
Thanks again!
brennie,
Dr. Shoemaker has made some findings in his ten years of treating people with biotoxin disease. The one that really sticks out for me is that if you are a certain genotype (25% of the population) you will not be able to excrete toxins. You need toxin binding drugs or supplements. His two books are awesome, Mold Warriors and Desperation Medicine.
There is no medical advice here.
Sharon
Thanks again, Sharon, I will check into those books.
Also, I was diagnosed with narcolepsy, so I am doing some research
on that. I have been sleepwalking a lot in the past few
months. Any suggestions?
All I can say is that biotoxin disease is a multi-symptom, multi-system disease according to Dr. Shoemaker. Everyone and I mean everyone presents with different symptoms but there are generally 20 symptoms that are common. Read up on Dr. Shoemaker’s websites and see what you think.
There is no medical advice here. I can only tell you about my experience and give you information.
Sharon
Hi somethingelsejr - I too have Addison’s disease but feel very blessed because I’m relatively healthy. I wanted to connect with others who had the disease and maybe ask some questions. Do you notice your skin is more sensitive being on prednisone? My sis and I have both been on prednisone for a few years (she because of a transplant and me because of Addison’s) and we have both noticed how sensitive our skin is to touch - particularly the lower legs. Have you noticed this as well in your experience? She seems to remember someone telling her that prednisone made it so sensitive. Thanks for your reply.
Hi I have been taking prednisone for about 10 yrs. and my skin is very sensitive to everything. To touch, hot, cold, any kind of lights make me very flushed and over heated. If I forget and scratch an itch it burns sooo bad. Being on prednisone for this long has done alot of destruction to my body, but I am grateful I am still bumpin around this earth. I been through alot w/ this disease if you have anymore ?s feel free to write back, or private message me.
TTFN
Dianna
Wow thanks Maui. Sometimes my legs ache and I ask my husband to rub them and when he touches them they hurt so much. I also find my hearing is more acute and I feel more alert but I don’t remember much before the Addisons because I went undiagnosed for 10 years. Luckily, I got caught in time (just wasn’t my time yet). It’s nice to connect with others who are battling the same war you are. I have been so fortunate. My doctor tells me I’m the healthiest addisonian he has seen. I have been concerned about the prednisone but what can you do? We need it to live. I know other addisonians who are disabled. It’s comforting to know others are still “bumping around” too.