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Hello all,
I am so glad to find this blog!
I am Guillermo, and currently leave in Kitchener, Canada. One hour away from Toronto. I suffer from Engelmann;s as well since I was 3 years old. The disease has affected my entire body, and sometimes the anxiety caused by pain and tiredness just takes me out of control. I developed intracranial Hypertension 3 years ago after a treatment with Aredia (Pamidronate) that was supposed to combat the bone density. Doctors say that it wasn’t a consequence of the treatment but related to my skull’s growth! I don’t know. I think it could be, but sometimes I wonder!!!
The same as some of you mentioned, when ever I visit a specialist, they have no clue about what I am talking about, and believe me I have visited several doctors, neurologists, endocrinologists, bone specialists, geneticists, etc….
Some have suggested treatment with steroids, but I am really afraid of the consequences, and side effects. I need to find a specialist with some experience about CED.
Can you guys give me some hints??
Thanks and I hope to hear from you all!
Guillermo
I am so glad to find this blog!
I am Guillermo, and currently leave in Kitchener, Canada. One hour away from Toronto. I suffer from Engelmann;s as well since I was 3 years old. The disease has affected my entire body, and sometimes the anxiety caused by pain and tiredness just takes me out of control. I developed intracranial Hypertension 3 years ago after a treatment with Aredia (Pamidronate) that was supposed to combat the bone density. Doctors say that it wasn’t a consequence of the treatment but related to my skull’s growth! I don’t know. I think it could be, but sometimes I wonder!!!
The same as some of you mentioned, when ever I visit a specialist, they have no clue about what I am talking about, and believe me I have visited several doctors, neurologists, endocrinologists, bone specialists, geneticists, etc….
Some have suggested treatment with steroids, but I am really afraid of the consequences, and side effects. I need to find a specialist with some experience about CED.
Can you guys give me some hints??
Thanks and I hope to hear from you all!
Guillermo
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Re: New to tribe
Tue, September 19, 2006 - 6:53 PMWelcome Guillermo!
Well Patrick will be glad to see hes not the only boy on the tribe! Sorry that you also have this crappy disease but its great you found this tribe - its helped me a lot to talk to others that are going through the same thing. Look forward to getting to know you.
Cheers, Dairne
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Re: New to tribe
Mon, October 9, 2006 - 5:04 PMHi ,
I'm Gretchen & have have had Engelmanns since I was 15. The only MD I found who had ever treated anyone with CAD is a Pediatric Endrcrinologist. His name is Lyndon Key, MD from Charleston ,South Carolina. He sort of dropped the ball with me because I aged out & @ the time the CAD was not very active.
gretchen
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Re: New to tribe
Wed, November 22, 2006 - 1:46 PMhi guillermo!
i've been to the mayo clinic in rochester minnesota multiple times over the last year and a half, and we've been trying to find a treatment that works for me. as of today i'm taking 1-10 mg. tab of prednisone once a day. we just raised the dose from 10 mg. every-other day to see if it would help. it's been almost 2 weeks on the higher dose and i've actually been feeling good. and feeling 'good' is the best i've felt in a couple of years. on top of the prednisone i take 1-20 mg. tab of oxycontin 3-4 times a day or as needed. and i back that up with naproxen. when i first started prednisone it made me very irritable. every once in a while i still feel irritated, but who doesn't? it fades over time, so i'm not worried about that side effect. there are other possible side effects, but i haven't really experienced them... except for the increase in appetite and possibly stomach irritation/heartburn. but with an antacid like zantac 75, which i use, it's usually taken care of. but one of my doctors said if you start taking prednisone at a higher dose it can possibly cause stomach problems along with lowering your immune system's ability to fight off infection. if my dose needs to be increased again, i'll have to take an antibiotic to compensate. he's leary of dosing me too high, so we've been taking a pretty conservative approach. i'd actually like to try an even higher dose of prednisone to see what i'd feel like. i figure i have nothing to lose at this point (i'm nearly 36 and was diagnosed at age 2).
that's the plan my doctors from mayo and i have developed. it's always open to change. i'd suggest talking to an endocrinologist again and discuss the pros and cons of prednisone. start out at a low dose and increase it in gradual steps and see if it works for you. i personally have more energy and stamina with it.
good luck and keep in touch!
patrick
