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-   -   Not so great app today. (https://www.neurotalk.org/myasthenia-gravis/119742-app.html)

tysondouglass 04-19-2010 09:19 PM

Not so great app today.
 
Hey all.

So i asked about accutane, and even showed him the article. I tried to explain to him that my weakness in my arms is somewhat static and that in the morning and night i cant brush my teeth or wash my face without stopping, (myopathy)But he continually says its my MG, and with heat, its just going to have to be something i live with until my thymectomy and cellcept kick in. He told me after a year, we should be on a better ground MG wise.
He told me i couldnt play soccer at a college level, which i should have figured as much.
AND HE SAID TO CONTINUE TAKING ACCUTANE, and that it has not problem with MG. How can he say that, after reading that article.

I am MUCH more tired after starting the accutane for a second time. And the headaches are worse.
I hate it.


I HATE when i go in feeling great to the neuros. He still said i wasnt good, but well enough to not be on plex for now. I miss my old neuro alot.

I asked him to do a CPK and Vitamin A test, and he would not do it. He said if i could convince my internist to do it, that was fine, but he wouldnt.

That was basically a worthless app. Though i guess i mean something to him, because all of his follow ups were booked till september and he got me in because he wanted to see me in may.
Yet hes not the neuro i want him to be.

Maybe he will realize that after im in the hospital with some toxic disease.


hope your all doign well.

jana 04-19-2010 09:46 PM

Where there's smoke, there's fire........

http://www.accutanelawsuits.net/

http://accutane.poweradvocates.com/index.html

http://toxic-torts.lawyers.com/Accutane-Lawsuits.html

http://www.lawyerseek.com/Accutane-M...suits-M29.html

http://www.onlinelawyersource.com/accutane/lawsuits/

And these are just from the first page of search listings.

AnnieB3 04-19-2010 09:49 PM

I'm sorry, Tyson. What some doctors do is "pass the buck" on anything too complicated. Well, side effects of a drug aren't very complicated!!!

Go and see your internist. And maybe you need to be a little more assertive. Maybe ask her "what ifs" like, what if I get permanent damage to my muscles but no one took this information seriously enough? Point out to her that the symptoms began with Accutane. They got worse the 2nd time you took it. Ask her what she would do when faced with a drug that could be causing damage.

When you think about doctoring, you have to think about which doctors do what. Neurologists can't be bothered running "general" tests like Vitamin A. However, he should've bothered himself to do the CPK. Why? Because if he doesn't and it's elevated, then he is culpable to some degree. Neurologists are kind of odd ducks. They don't like dealing with anything out of their realm. Probably because they don't know things out of their specialty and it might make them look stupid. No one wants to look stupid but what's worse is hurting a patient.

No neuro or any other doctor is perfect. It's always a mixed bag.

I still think your internist is your best bet. And maybe ask her to refer you for a 2nd opinion on the acne. Did you read what I wrote in the other post? I was wondering if you had rosacea.

Don't let this get you down. This is what doctoring is like. Internists should be the ones who pull everything together for you. So lean on her.

Take some time to do something fun. No, not physical! ;)

Annie

Good ones, Jana. I know, I was overwhelmed with the warnings on Accutane. I took it decades ago.

DesertFlower 04-20-2010 12:46 AM

Tyson

Remember, you can tell the doctor you want to stop taking Accutane. Your doctor will ( or should) give you instructions on how to stop, even if they don't think you need to.

Take care :hug:

mrsD 04-20-2010 03:15 AM

Accutane is a voluntary treatment. The patient always has the basic right to decline a treatment. If you feel worse taking it, then you can refuse it. You don't need a doctor's permission to refuse a treatment. Now sensibly if it were a cardiac drug or a drug for seizures, or diabetes, you'd have to defer to your doctor's opinion in a much different way.

If the general public knew how little doctors get training on DRUGS they would be horrified. Typically doctors within a specialty do not know about other drugs. I used to have doctors come in on midnights and ASK me what a certain drug was for and how to use it! There are doctors out there who do not know how ibuprofen works, or what the abbreviation NSAID means.
In medical school they get one class on pharmacology as a rule.

A neurologist who doesn't know that Accutane potenially can cause pseudotumor cerebri (increased intracranial pressure)? That is pretty scary. The main presenting symptom of this is headache. Are your doctors ignoring your headaches too?

mrsD 04-20-2010 03:51 AM

The Roche company stopped making Accutane brand of isotretoin because of the lawsuits that are increasing in number.
This was announced in June/July 2009. Most people don't realize that when a drug goes generic, the lawsuits that generate from the generic revert back to the patent holder --Brand name drug. So sometimes a dangerous drug is discontinued when it goes generic, like in this case. Another example was Seldane. But I think that was so long ago people now have forgotten it.

Nicknerd 04-20-2010 12:05 PM

Quote:

Originally Posted by mrsD (Post 646202)
A neurologist who doesn't know that Accutane potenially can cause pseudotumor cerebri (increased intracranial pressure)? That is pretty scary. The main presenting symptom of this is headache. Are your doctors ignoring your headaches too?

I think that prednisone can cause this effect as well (intracranial pressure).

Jaimee 04-20-2010 01:12 PM

I took Accutane as a teen and had horrible headaches and dry eyes... not fun. I'm sorry you're having trouble!

tysondouglass 04-20-2010 09:10 PM

Annie- you dont have any reason to be sorry! Its my fault, i guess?

I made an app. with my reg. doc, and am going to bring in a list of questions and possibilities that could be causing this. I still think toxic myopathy is something to consider, as my arms and legs are always tired all day. Not getting any better with rest. Yet, ill live.

Im still having nose bleeds. When i bend over to try to wash my face in the sink, i get them more than just sitting. I got one going to the neurologists yesterday, and it was all clotty. I told them, did they care? No.

Nope i dont have what you posted, its just acne i guess.

But thanks for everything ill look into it.

Desert flower- I know, i realize i can, yet if its not the accutane id rather stay on it so that I can get rid of my acne. If i found out every other possibility was negative i would go off it. Thanks:)

Mrs. D- Thanks for all your input. It sure is helpful, especially with all the links and stuff. Yes, they are just saying that the headaches are side affects. I guess everything is side affects. They arent even making sure its nothing else. So im turning to my internist. Thanks again.


I feel the same today. Chest pains, headaches, not being able to wash face. But, im okay. Hope you all feel well.

tysondouglass 04-20-2010 10:12 PM

Also- quick ?. Do you guys have more trouble breathing laying down? Is that from mg? I hate the acid reflux the pred. Has given me. Its horrible. I always get acid throwup in my throat:(. Night


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