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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-17-2010, 08:05 PM | #11 | ||
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Grand Magnate
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Tyson, The simple fact is that doctors don't know everything. They are NOT Gods. They may not know about this information. Blindly trusting any doctor is dangerous. I'm not saying you shouldn't "trust" your doctors but not blindly.
At the very least, they should be doing these tests. CPK and vitamin A level. Accutane can affect the telomere enzyme. Read more and you will know what I mean. You keep saying you have these awful symptoms and yet you won't listen to anyone's advice. You are often on the verge of going to the ER. The chance of your symptoms not being either Accutane alone or in combo with the other drugs is almost zero. A buildup of CPK won't necessarily show up on an ECG. You need to start to THINK about all this. HOW you think about medical issues is more important than the actual facts. I think it's time for a 2nd opinion on the acne. Tyson, I know there are other treatments out there. And you need to know the CAUSE of this kind of acne. I simply can't handle beating my head against a wall anymore. I fully support you but there isn't any more I can do on this topic. Sorry. I guess you will continue to think this is all okay until you have something worse happen to you. You are not invincible, like all young people think they are!!! Annie Here, read these. http://www.nlm.nih.gov/medlineplus/e...cle/000473.htm http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125522/ I have to add one more thing. For doctors to BLINDLY ignore that a patient is having adverse reactions to a drug and then not do anything about it is unethical. Potentially worthy of malpractice. Yes, all drugs have side effects - which I'll bet that's what your doctors say - but patients who have significant side effects of a drug should not be on that drug. And they have not fully investigated to what extent exactly what effects those drugs are having on your body. This is the kind of situation that occurs over and over again in medicine and that is why so many people are injured or killed due to drugs. It's "easy" for a doctor to proclaim that taking a drug is an "acceptable risk." They don't have to suffer with any of the consequences. Last edited by AnnieB3; 04-17-2010 at 08:47 PM. |
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04-17-2010, 08:53 PM | #12 | |||
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Member
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Annie- You always write back so quickly, i love it - I guess i agree, its not okay to trust a doctor with my life, which in all reality, i should be able to. But thats life.
I will call my internist and and ask her to do those tests. I also have a neuro app. on monday, so ill print that out and give it to them. Do you believe my symptoms? The way you wrote it seems as though you dont believe them, or me. Dont take that personally. I could have misread. Yes i know im on the verge of going to the ER alot. Yet im dont have anyone to TAKE me most of the time for the chest pains. My aunt and uncle only think it is necessary if i am going into a crisis. Its very hard to convince them. Yet im hoping all it is, is the side affects. Could perphiral neuropathy (from that site you posted earlier, come into the picture? I often have pain all around my body. Not that often though. Ill also consider a 2nd opinion. Yet im sorry, that im causing you to beat your head off the wall. You as well as i want to know whats going on. But its hard for me to do all this at 17. But, thank you very much for all your help annie, and if you cant keep posting, its quite alright, i understand the stress. Hope you feel okay! |
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04-17-2010, 09:24 PM | #13 | |||
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Eh, now my pulse is at 110 again, and having some chest pains when breathing in.
I know what your going to say, though. |
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04-17-2010, 09:29 PM | #14 | |||
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Omg...I totally just typed, 'What's your Tyson like, Acne?' LOL...I had a moment...
Anyway, Tyson, how bad was your acne? Like all over-your-body bad? I remember in highschool, there was a guy who had very severe acne...I felt really sorry for him...I could tell he was really embarassed about it...He'd always walk with his head down, poor guy... Alright, so I must admit, if I had severe acne, I might consider taking this accutane...I'm pretty vain, I'll admit...BUT- I know me, and I'm also super cautious (well, other than my horrid smoking habit, but that's another story), and I'd look into other treatments that didn't have such deadly side-effects. If I were 17, and I do remember what it's like, it was about 10-years ago, i might not look into the sides so much, so I'm pretty impressed that you're here...That shows that you want to hear about other people's experiences....Very mature, if I can say so... Anyway, I went off-topic a bit...What if prednisone could take care of your acne? Do you know what happened when I first started prednisone? Absolutely no joint pain, no more rash on my arms, my face seemed less red (blotchy)...These effects persist until today...I got a mild touch of what I thought was acne, but actually turned out to be a skin infection as it cleared up after antibiotics...So I feel like prednisone could work for acne too... My point is that this medication is just awful...When I was reading those blogs, people were talking about how their dermatologsts were very nervous and resistant toward prescribing this med... Some refused despite their begging...My sister's friend had a bit of acne on her chin which she was obsessive about...She begged her doctor to prescribe this, and he would not. I can see that you don't want off it. I know you're scared about the acne returning, which is completely understandable. I just really don't like this medicine, that's all...And the things you've mentioned over the months sound really scary, and I have to admit that some of your posts scare me. The nose/mouth bleeds, the racing pulse and not being able to breathe...I mean, I can't say unequivically that this is from Accutane, but because this medicine is so toxic, and lists the very sx as sides that you've mentioned, and causes muscle damage, I can't help but feel that by at least getting it outta the picture, worries about it causing your problems can be put aside. This medicine just complicates the situation when it seems unecessary/not worth it, at least in the context of what it's treating. Anyway, I will stop bringing it up. I at least want to get this out there in case it helps you in any way. I wish there was a medicine that treated acne without the high price because I know it'd be a rough ride to have MG plus a problem that might be disfiguring. Nicky |
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04-17-2010, 09:39 PM | #15 | ||
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Grand Magnate
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Oh, Tyson, OF COURSE I believe YOU. That's plain silly.
What I don't believe is how doctors are taking all this so lightly. You're taking it a little lightly too. I've seen too much in all these years and know how bad situations can get when the obvious is ignored. I don't want that to happen to you. No, it's not that I won't keep posting. It's just that I can't keep saying the same thing over and over. You have to start taking control of this situation and take it seriously. If you do have a high CPK from the Accutane, it will hurt your muscles. My Aunt had polymyositis, which causes an increase in CPK. Anything not normal is, well, not normal. My point about side effects, which maybe I wasn't clear about, is that you are have moderate to severe side effects. That in and of itself is enough to stop a drug. Doctors talk about side effects as if they are benign. They aren't. Some are, sure, but yours are nothing to take mildly. They are causing a high pulse, bleeding, increased weakness, chest pain . . . lots of things. Don't be unduly upset by this information but do take it seriously. Calmly tell your doctors that your symptoms are not normal, that they are concerning you, that you have new information and that you both need and want answers. Your aunt and uncle must understand that it isn't only a crisis that can happen to you, right? Sometimes people simply can't handle medical issues. Sometimes it's absolutely necessary to get a 2nd opinion. Not all specialists are created equally. They don't all have the same magical base of knowledge. Some know more than others. And some are willing to actually keep researching for their patients! Trust your instincts. Do what you have to do to stay well. Annie And maybe they should have checked your testosterone levels, before the acne treatment. http://acne.about.com/od/acnetriggers/a/hormones.htm Last edited by AnnieB3; 04-17-2010 at 10:23 PM. |
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04-18-2010, 08:32 PM | #16 | |||
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Nicky- My acne isnt horrible i suppose. Its mainly just VERY red. and gets very irritable. But i guess id rather have that than my DNA altered..But my acne hasnt even cleared up yet, so maybe its not going to work. But Pred. will not work for my acne, it actualy makes mine worse. Im getting off, and its going away a little more.
thanks Annie- Okay, glad u believe me. Im really tired tonight, and dont feel good, so i dont think im going to respond to this whole thing. Yet I get what you mean about all of this, and plan to talk to my DR. about all the symptoms, etc, and ask for that blood test. goodnight,. |
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04-19-2010, 08:27 AM | #17 | |||
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Wisest Elder Ever
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Flax oil taken by mouth cleared my son's acne right up. Another valuable tool is zinc supplements. (zinc is often low in teen males since it is used alot in the reproductive system). My son's acne was mostly on his back and chest-- which is far more common in males. But he'd have some small zits on his face now and then.
Prednisone creates a "cushingoid" metabolism in the body. And often CAUSES acne as a side effect. Patients with real cushing's syndrome typically have acne all the time. Cushing's is a disease of the adrenal glands and/or pituitary, which raises cortisol in the blood. Accutane was developed for SEVERE polycystic acne patients. But doctors today prescribe it even for mild forms, which is a foolish risky thing to do IMO.
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"Thanks for this!" says: | AnnieB3 (04-19-2010) |
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