Don't Take No for an Answer...

[JanetMegan]

Hi (waves) long time no post-esp in here. I just wanted to chime in about something personal for a moment. Those who have known me through this site for years have been following my medical issues of the last couple months on my FB page and through my blog but I wanted to take a minute to post here just in case someone had a similar struggle.

For the last couple of years I have been getting sick. Sicker and sicker with crazy symptoms that seemed somewhat unrelated. I had crazy weight gain for no reason, astronomical blood pressure (almost to stroke level), pain in my legs, I started to get this strange hump on my upper back and neck, a lot of my hair fell out etc. I mean strange stuff, esp for a normally healthy mid-30s woman.

I went to numerous doctors who told me to "lose weight" or that I needed to be "more active" or one even suggested early menopause. No one could figure out anything actually wrong with me.

Finally after my primary care doctor threw her hands in the air after being unable to get my BP under control (160/120 resting) she sent me to a cardiologist. He ran a couple tests and told me he thought my heart was fine but that he thought there was something very wrong with me. He ran some bloodwork that showed a very high level of something called Corisol and sent me to an endocrinologist. 6-8 more blood tests and a CT later and they discovered a pre-cancerous tumor on my adrenal gland that was causing something called Cushing's Syndrome. Something that had EVERY single one of the symptoms I had.

One week after finding the tumor, minus an adrenal gland and the tumor I was home from the hospital. Now I'm on some pretty serious medication for the next year or so and it will take a long time to clear up all the damage that this nasty sickness did to me but I post this for all of you who deep down KNOW something is wrong inside your body. Don't let someone just tell you you are fat, or that it is all in your head-keep looking until you find a doctor who will listen to you. Who will run the appropriate tests!

My blood pressure is already coming down and the weight is SLOWLY coming off (that will be a long road.) I still feel pretty crummy some days but I am on the road to being myself AGAIN!!

[Mickey'sGirl]

Fabulous Janet. Take care of yourself! :thumbsup:

[faline]

Glad to hear you finally found out what the issue was!

Similarly, my husband had onoging symptoms. Based on family history, I suspected I knew what it was but the docotor(s) kept saying that was not an issue. Finally, my husband had to go to the doctor and say there was definitely something wrong with him and he was not going to go away until they figured out what it was. They ordered one more test which did not come back normal. They still said surgery was unnecessary but they would go ahead with it - guess what, the surgery was very much needed!!

[tinkwest]

Thank you for sharing your message Janet. Through dealings with my husband's health issues over the past two years we have learned that it is not impolite, in fact it is necessary, to ask questions, search for second opinions, and sometimes disagree with what your health care professional is telling you. It does not mean they are unprofessional or incompetent. In fact we have found that most of them are there fighting right along with you and are thankful for any input you have. But you are closest to the problem and live with it and need to somehow continue searching for the answer through as many means as possible when you can tell that something is not right.

Glad you are finally at a point where things are being addressed.

[princessgirls]

Janet,

Thank you for sharing your private health care journey. I am so happy for you that you finally were able to get to the cause of all of your health problems. All too often, we are not taken seriously...We know our bodies!! My husband likes to remind me that Dr's "practice" medicine and there isn't always an exact science to it.
I was blown off by our pediatrician for a rash my daughter had, it wasn't going away and she had other symptoms that the Dr. didn't seem too concerned about. The week Hurricane Sandy blew in, and we were without power, work, school, soccer dance and life stopped, I clearly saw my daughter was not well. I suspected diabetes, called the Dr's office to get an appointment and they said, No, we don't think she needs to come in. I pushed it...one blood test later, I was in the ER with my daughter, and she was diagnosed with type 1 diabetes. Insulin dependent. The Dr. kept blowing me off. Always Trust your own instincts!!!!
Janet...Prayers for you as you continue to heal and recover from your illness.
Julie:mickey:

[DVC2004]

Wow, I am sorry to hear this and thank you for sharing your story. I am glad you finally have some answers and are on the mend. I agree that it can often be frustrating when dealing with the medical community. My son has autism, and when he was little (this is going back 13 years ago) I would express my concerns about him to the pediatrician, particularily about his speech development. This was before any diagnosis just observations we had. I was told repeatedly don't worry about it and he is a boy, that is just how they are, etc. They refused to test him or send him for any further evlaution. I thought well OK, maybe it's me and I am just overreacting. When he began school we had all sorts of issues. We had the same pediatrician group and I went back to plead with them for help as he was having so many issues at school and wasn't learning. The school said at the time they couldn't do anything unless the doctor had some testing done or requested the school proceed. I took my son straight to the doctor that day. Another pediatrician in the group saw us that day and insisted I have my son's eyes checked because that had to be the problem, she said. I told her they had been checked just one month earlier , they were fine, and she still refused. I pleaded with her to call the school and speak with his teachers about what was going on since she didn't seem to believe me. She flat out refused- his eyes were the problem she said. Well guess what? They weren't the problem at all. We were forced to take him to the hospital for an evaluation. Then the same doctor who told us he was fine all those years and just "being a boy" wrote a comment in the evaluation saying my son definitely was in need of additonal testing and services. Gee, thanks for wasting 3 years of our lives. I did file a complaint with the state (not a lawsuit) about this but nothing came of it. Bottom line, eventually we got the help needed and he is doing great. We did change doctors and have no issues with our current doctor. BTW, he still has 20/20 vision.

[VWL Mom]

Glad to hear you are on the mend. :mickey:

[minnie04]

So glad you finally got someone to listen and run the right test :thumbsup: hope your journey back to health is a fast one.. keep your spirits up :mickey:

[Aurora]

Hi Janet! Glad to hear you are getting the medical treatment you needed!

I can't tell you how many times I've asked doctors for tests that they didn't think were necessary only to have the tests come back positive for one thing or another. And I have GREAT doctors.

It is no exaggeration to say that you are your own best advocate for your health. I always tell friends that if you're not getting what you need from your doctor or group, find another -- there are lots of good physicians out there!

[PETE FROM NYC]

Glad to here you are improving.
That's the trouble with too many MDs. They see a symptom and hand you a generic sheet of paper from the drawer. I see so many docs myself, most only half-listen.

[MNNHFLTX]

Janet, before I had even finished reading the second paragraph in your post I said to myself "that's Cushings!" It's amazing that it took your doctors so long to put the picture together, and then only because you were persistent.

I always tell patients to write down the questions they have for the doctors and not to settle for quick, vague or complicated answers that they don't understand. Even more important is finding physicians that truly listen to their patients. They might be difficult to find, but they are out there.

Glad to hear that you are home and on the mend. :thumbsup:

[JanetMegan]

Thanks everyone for the well wishes! I am doing better, it's nice to start to feel like my old self again-I honestly had forgotten almost who that person really was? Now to plan something Disney-ish-maybe next Spring when I am really 100% better!

[Melanie]

Janet, been following your journey, and am so glad you are heading back to 100%!

[SBETigg]

Janet, thank you for sharing. So many doctors will just chalk it up to "you need to lose weight" instead of really looking. I'm sad that this happens, but I know it does. It pays to be vigilant about your own health, and I am so glad you were and that you found a doctor who listened and really investigated. Best wishes with your recovery.