An Update on my Health Problems

[Beaux]

Rather than revive the old thread, I decided it would be easier to just start a new thread to let everyone know what is going on with my health (for those who may be new or didn't read my original thread, in the past few years I have developed excruciating pain in both of my hips (I have to walk with a cane and cannot walk at all on particulary bad days), I feel completely exhausted all the time and sleep in average 14-18 hours a day, and no matter how much I eat I cannot gain weight (in fact, consuming in excess of 3000 calories a day, I continue to loose weight; before this began I weighed 220 lbs and am presently 146.6 lbs).

SO...I had my first appointment with the Endoctoronologist, and she has diagnoised me with Secondary Addison's Disease. It was apparently brought on by 24 plus years of receiving corticoid treatments to counter another illness called Sarcardoisis that I was diagnoised with when I was 19 years old. Specifically, the corticoid treatments lead to a narrowing of the blood vessels leading to my hip joints which has caused aseptic necrosis of the "head" and "neck" of my femurs, AND it has also resulted in Adrenal Fatigue (possibly Adrenal Failure), which means my body has stopped making enough cortisoids on it's own.

I go back to the doctor this coming week for further testing, after which I will begin bio-identical hormone treatments. Normally, the condition would be treated with standard cortisol (like prednisone), however, in my case, prednisone is what has caused the necrosis (and pain) in my hips, which means I not only have to have the bio-identical hormones but I have to have EXACTLY the amount my body needs every day. To accomplish this, I will have to go to the doctor for blood work every month and give myself injections every day (really it isn't too much different from treating diabetes). If my insurance allows (and we can afford the co-payment), I will eventually have the inplantable pump surgically installed.

I have already started a pain management program for my hip pain, a combination of neural depressants, 3 day morphine patches, and a low dose of oxycodone as needed for "break-thru" pain. Though I am not enamored with the idea of taking pain medication for the rest of my life, it is really a question of what kind of standard of living I am willing to endure. Since I started the pain medication régime, I am MUCH more mobile and am even able to walk with out my cane sometimes, which has been absolutely FANTASTIC!!!

The doctor says that I will see immediate results as soon as I start the hormone replacement, which I am SO looking forward too! However, due to the LONG period I have suffered with this before I was diagnoised, I will have to start a 3 month physical thearpy schedule to regain my muscle mass and weight. I cannot tell you how excited I am to start the physical thearpy program!

I would like to thank everyone who was concerned about me, and those who were kind enough to send me PMs offering their support and advice. It truely meant a lot to me and made me feel much less alone in all of this!

Xoxoxi,
~Beaux

[Rareboy]

This is very good news. Hopefully you will find relief at last.

[East]

(((((Beaux)))))...I am so happy that you found a doctor who could figure it out!!!!!!!!!!! I hope you get relief very soon...this is really great news!

[Bowyn Aerrow]

I'm glad someone figured it out. Uncertain if I am pleased that no one else figured this out considering your medical history is written down. Surely that bit of knowledge about lots of cortisol should have been in your file.

Will there be substantial regeneration of tissue loss in the affected area? If so then pain may be reduced over time, meaning you may not have to always be on high doses of pain medication. Also PT may actually do more to reduce pain than one would imagine. Since this is hip issues, strengthening the supporting muscle may do more to offset the looseness of the ball in the joint thus reduce the over all pain.

Its good you are back on your feet (a lot)....

[meridannight]

glad to hear you got diagnosed. i hope you will get better. a life-long regimen of drugs/medical treatment isn't surely anything anybody would wish for themselves, but if it improves your quality of life then that's what you got to do. i wish you the best.

[Hardheaded1]

Beau, I'm so happy for you. It's great to hear you'll be getting relieve.

Many of us suffer as you have, but from lesser plagues, and the doctors seem to never zone in on the actual cause. In my case, they keep throwing stuff at the symptoms, which is maddening. I don't want relief from symptoms, I want relief from the illness.

Good for you. It brightened my day to learn this.

[Beaux]

Beau, I'm so happy for you. It's great to hear you'll be getting relieve.

Many of us suffer as you have, but from lesser plagues, and the doctors seem to never zone in on the actual cause. In my case, they keep throwing stuff at the symptoms, which is maddening. I don't want relief from symptoms, I want relief from the illness.

Good for you. It brightened my day to learn this.

Well, you have to be a reflection of your namesake-- HardHeaded lol. Keep at it, it took an even dozen doctors before I was finally diagnoised (and lots and lots of $$$$). Health care in this country is absolutely infuriating! The doctors are so involved in their own feilds and so involved with their own practices that they seem incapable of communication amongst themselves.
I am not kidding when I say that I literally get knots in my stomach just thinking about doctor appointments, and part of me still feels like having been diagnoised is just a dream. I feel genuine fear that I will wake up and discover that it was all a dream and they still don't know what is wrong with me.
It is a sad indictment of our medical profession when simply receiving a diagnoises can cause PSTD....
~Beaux

[Bhp91126]

Thank you for clueing us in. I hope that the therapy will be successful.

(I'm jealous though about being able to eat upwards of 3000 calories per day and still losing weight, my mouth is watering just writing about it, jk)

[Hardheaded1]

Health care in this country is absolutely infuriating!

Thanks, Beaux.

I've never feared doctor visits, but I've also held out little hope, as they always seem lazy to work at true diagnosis. They brush off recurrent illnesses as manageable when they are painful and probably treatable.

I have never figured our why the insurance industry refers to the doctors as "caregivers." The irony.

Thanks for the encouragement anyway.

[Beaux]

I'm glad someone figured it out. Uncertain if I am pleased that no one else figured this out considering your medical history is written down. Surely that bit of knowledge about lots of cortisol should have been in your file.

Will there be substantial regeneration of tissue loss in the affected area? If so then pain may be reduced over time, meaning you may not have to always be on high doses of pain medication. Also PT may actually do more to reduce pain than one would imagine. Since this is hip issues, strengthening the supporting muscle may do more to offset the looseness of the ball in the joint thus reduce the over all pain.

Its good you are back on your feet (a lot)....

Well, it does piss me off to be honest! All that info was available to them, and none of them until this last one even blinked after reading me medical records (although, I have caught more than one pretending to have read my medical records when they hadn't...).

Other than the loss of muscle from inactivity and malabsorbtion of nuitrients, I don't actually have a great deal of tissue to regenerate. The part of the femur that is dead won't ever recover, but the doctor says that I should have a lessening of pain once my body begins to absorb nutrients again, as there are a number of vitimines (like vitimine D) that lessen pain to some degree. I personally have high hopes for PT, but my doctor says that, reguardless, I will eventually have to have hip replacements because of the necrosis of the neck of the femur. She says that they will inevitably break and that it is better to replace them before that happens, but by the same token we should put it off as long as possible.
~Beaux