Will you guys catch me when I fall?

[flutterbee]

So, I've done the research and I've decided what is wrong with me. Every symptom matches, including the heart disease. It's like a one stop shop. And it can be fixed; cured. Everything should resolve itself after that - the muscle weakness, cognitive issues, fatigue, the weight gain, etc. The heart disease is permanent, but I can work with that. I just need the endocrinologist to confirm this in October and then treat it. And this would completely alleviate the need for the NIH or Mayo or Cleveland Clinic. Plus, this is something that a year ago I had never heard of, but now it is all around me. It's like neon signs.

Eternal optimist, I know.

So, if I'm wrong and I crash because I've put all my hope into this (and I really do believe this is what it is, but I'm not a doctor), can I lean on you guys?

When I do get better, I'm going to figure out what kind of degree I need and go into patient advocacy/education. I have a passion for it.

 

[KTMom91]

I'll be here, Heather!

 

[klmno]

Count me in, too! by the way- what is it?

 

[Hound dog]

Heather you know I'll be here.

I've done that so many times with Travis, and actually Nichole too. But so far have been right each time. Luck? Maybe. But I think it's just because I was motivated to do the research to find an answer to the problems.

And I'm dying to know what you're thinking it is.

Hugs

 

[Suz]

I'm curious, too- and wish you well. What do you think it is?

Suz

 

[mrscatinthehat]

Sure will be here for you.

Beth

 

[Jena]

ah....ok as we all say self diagnosis'ing is not good, yet you know you best and what you are feeling. Ok you are optomistic as well you should be, and you are so cute to state the degree you want to work towards after nipping this thing in the butt.

ok i haven't followed your posts regarding your health, have you been to the dr. at all? how long has this been going on for?

Did you actually ask if you could lean on us??? thats a silly question!!! But ofcourse......

 

[flutterbee]

It's a secret, but I know I can trust you guys. I'm almost afraid to say it out loud. Some I'm crossing my fingers that I don't jinx myself. I think I have Cushing's. Every single symptom fits. Every single one. And I have the Cushingnoid (whatever that word is) appearance. It's pretty specific.

Jennifer - I've been to doctors and specialists and have been referred to the National Institutes of Health (NIH) Undiagnosed Diseases Program because they haven't been able to figure out what's wrong with me. Mayo Clinic has also said they want to see me. Which, if it turns out it's Cushings, they may very well as Linda told me they are doing some kind of study. I've been dealing with health issues for several years, had a heart attack in March, 2007, and have been unable to work since a year ago this month with debilitating symptoms.

 

[Wiped Out]

I'm definitely here for you!

 

[TerryJ2]

I'll be here.
Are you going to the Mayo, or just thinking about it? Will you be telling them your hunch b4 they begin testing?
Best of luck.

 

[flutterbee]

Terry, I see an endocrinologist at OSU on October 21. I did the research to find the right doctor because each specialty has it's own sub-specialty and I didn't want an endo that specializes in diabetes or thyroid. I found one that specializes in adrenals and pituitary - where Cushing's would come from.

Mayo has said they wanted to see me, however they don't contract with my insurance. So, we would have to spend several months trying to get the insurance to approve it, then several more months for the appointment. My GP is trying with the NIH because it is a study so they will pay for everything, including flights and lodging. If I don't get in there (they're only taking 50-100 patients a year - and I'm hoping that if I'm right and see the endo that I won't need to), then we're going to try the Cleveland Clinc. Since they're in Ohio, chances are they'll take my insurance. And while Mayo is the best of the best, Cleveland Clinic is damn good, too.

 

[susiestar]

Cleveland Clinic is amazing! One of my bff from high school flew to clevelan Clinic from OKLAHOMA to have surgery done on a tumor on her mom (bff's mom) (both were from OK). My mom said today that if we can't get some answers soon she may fly ME to Cleveland Clinic. I think if you can get seen, then GO!!

I will TOTALLY be here to catch you if you fall. For any reason at all.

hugs, and PROUD of you for finding your own info and advocating for yourself!

 

[flutterbee]

Susie, maybe we can be roomies.

 

[witzend]

Of course! And it would be wonderful if you knew what it was that was going on with your body! Is there anything diet-wise or supplement wise that you can do in the meantime that might give a little hint as to whether you are right?

 

[flutterbee]

I don't think so, Witz. Cushing's is hypercortisolism that is commonly brought on my steroid use (prednisone, etc), but less commonly - considered rare - is brought about by a benign tumor on the pituitary or adrenal gland. Surgery to remove the tumor is the treatment. You can diet and exercise all you want and it won't make a bit of difference.

I haven't been on long-term steroids, but it can infrequently be caused by injected steroids which I have had, but not a lot. And I've had the symptoms for a long time before I had the steroid shots.

I see my GP next week and as she keeps all her medical records on the computer, she can print off graphs/charts of my blood pressure and weight gain and has documented the new stretchmarks that I've been getting even though my weight has stabilized. They're bright pinkish-purple and I keep getting more and more. I'm going to have her print off those charts so I can take them with me, plus pictures so he can see the dramatic change in my appearance. All signs of Cushing's, plus the muscle weakness/atrophy, excessive sweating, fatigue, cognitive issues, facial hair (ugh!), the moon face, fat pads around the collar bone, etc, and it can cause osteoporosis, too. It also increases the risk of cardiovascular disease, so if I've had this for a while it could explain my heart disease that no one else seems to be able to explain.

 

[gcvmom]

It all makes sense to me, too, especially when you describe everything that way. Sure hope that's what it is because then at least you can start doing something about it and get your health back to a reasonable state!

Hang in there... just a few more weeks until your appointment and the ball gets rolling, hon!

 

[busywend]

Crossing my fingers, Heather!


Now, be very careful how you approach the new doctor with your thoughts. Let him come to the conclusion if you can. Some doctor get their hair up when people come in with a diagnosis. Let him come to the same conclusion you did.

 

[Big Bad Kitty]

I have my net ready. All my prayers in the world going your way.

 

[nvts]

Whew! I thought you were going to say you were pregnant! lol!

Of course we'll be here for you! Wouldn't it be great if they can clear you up before you end up looking like Peter Cushing!

I'm so happy to hear you sounding optimistic! Personally, I think working as a patient advocate would be your "niche" job! With all of the threat of lawsuits, a lot of doctors would rather say "I don't know" rather than take a chance at something being incorrect!

All body parts that I can still cross are crossed!

Beth

 

[hearts and roses]

Heather, we're all here for you. In a way, despite the horrors of the diagnosis, at least knowing is better than not knowing.

Hugs and please keep us updated.