Neuro App. Tomorrow
 

So i finally urged my neuro into an appointment.

He somehow had no idea i was hospitilized from the crisis a few weeks ago..

But its been a month since my last plasmapheresis and it only lasts about a month for me, so i figured out thats whats making me so weak. And Otp w my neuro he doesnt think the pred. is going to work. So im going to see him tomorrow and see whether or not to stay on the pred. or do plasmapheresis again.

Im thinking the plasmapheresis is going to have to happen, because a month in and, the pred. isnt working hardly atall.

Im sitting here, after taking a nap and my arms so so fatigued im hurting just writing this. My breathing isnt good, its hard to take a deep breath in, and its just not the normal way of breathing.


I hope i dont get there and hes like, oh you look good, just go home.

I want him to see how bad i am right now. Yet time will only tell.

Hope you all are doing well.

Tyson,

I'm going to be damn serious right now, ok?

Please read this and anything else you can get your hands on.

http://www.myasthenia.org.au/html/treatments.htm

And you ABSOLUTELY HAVE TO bring up the fact that you are on both Pred and Accutane. A call to your pharmacist will let you know what effect Accutane has on Pred - maybe. The two are NOT supposed to be taken at the same time!!!! Even one day may be too much (you said you were only going to be on Accutane for a little longer, which can do lots of harm).

And you may be on too much Pred.

WARNING: Going off of Pred too quickly can cause an adrenal crisis. You can die from that.

Something is not adding up. Maybe switching to Imuran or another immunosuppressant would help but those can take a LONG time to kick in too.

The bottom line is that you need help now. And if someone doesn't refer you to a pulmonologist, they are idiots. You have to have some kind of objective marker for your breathing so your neuro can SEE that.

Stand up for yourself. You know your body and how you are doing. And be completely honest with your neuro (not that you wouldn't)! ;)

Annie

I hate when doctors say we look good. I want to FEEL good. Ask him if his eyesight is so good that he can see your neuromuscular junction . . .

Listen to Annie.. mixing those two meds is bad, bad, bad and don't just stop taking pred, you must wean off of it.

Please let us know what the Dr says and I hope you start feeling better soon.

You may have left for your appt. already...if not good luck. I hope you made a list of everything you want to discuss with him, it helps me a lot. Will be waiting to hear how you made out.;)

Hugs,
Pat

Very good Annie! "Ask him if he can see your neuromuscular junction." I love that and it made me smile.

Tyson, listen to Annie. Hope that you get help soon. Take care ~ Melanie

Praying for you buddy and let us know how things turned out.
Simon

Hope it goes well Tyson.

I also liked Annies bit about asking if he could see your NMJ! Hilarious!

Love
Rach

Well I got Answers I suppose..
 

Annie- I completely feel you on the Accutane and Prednisone aspect, yet they do know I am on it, and when I went in yesterday, they asked if I was still on it. They said it was not an issue...so should I still call my pharmacist? I see where your coming from.

Yet this is how my appointment went..

He did the usual testing, pushed on my shoulders, made me look at his finger, etc, tested my leg strength. Then told me he didnt think the prednisone was working, but still wants me on it another month just to make sure that its not going to work. Because the plasmapheresis is worn off as of now, and im having trouble getting up the stairs, and such. -just trying to clean my room today was hard...

Yet he discussed options of Cellcept and Imuran after this next month w the pred. not working.

For the short term, so i dont go into resp. failure, he is trying to get me set up with plasmapheresis next week for 6 sessions to help w the bad symptoms that im having right now.

Hes hoping that the thymectomy works, yet as you guys know it takes a while to see.

But the thing that he said that bothered me the most was; "with some patients, they can excersize and maybe they'll have a bum leg, or eye after, for thats all this disease affects them w. Yet, you arent allowed to excersize AT ALL. No yoga, no walking, no running, no lifiting weights, no nothing, for I think its a life or death situation here, and you need to take this very seriously. If you push yourself, or even walk too much, you could without symptoms, have your lungs shut down, and not have time to get to an ER, and die. This is uncommon, yet your a patient that has to deal with it.'

So that was hard to hear, as you know I WANT TO BE ACTIVE. Its so hard! UGH.

Its so hard seeing all my friends go play basketball, and club soccer that im supposed to be on, going to all these tournorments and stuff and having to watch. And sit home and be a couch potato.

He says, usually in the patients that he treats their usually 60, and dont care about being a couch potato. But i do. im 17. I want a life. Its hard going through a regular school day. But now knowing that this disease could kill me, ****** me off even more.


Annie- about the pulmnologist, I WISH he would listen. I asked my neuro at UNC, (different than my reg. neuro) for a referal, he said no, because i didnt need one. Though my reg. neuro is getting me set up with a specialist at Duke, hopefully soon. They will probably have a pulm team to check me out at that app. Yet i dont know when that'll be..


Thanks for caring everyone. Im trying to deal with it. But its so hard.

I hope you all are doing welll

Ok, Tyson -- I may get yelled at by some other members -- but, I'm gonna go out on a limb.

I know NOTHING about Accutane and Prednisone -- but, I trust what Annie has to say.

I taught jr. high and high school and was a school counselor for 28 years -- so, I'm pretty comfortable with people your age -- and I feel like I understand your frustration.

I think that your neuro is WRONG. I think that you are in an exacerbation, plain and simple -- and that IF you give it time, you will regain "some" of your normal life. (This is the part where other members might get mad.)

Stress is a "killer" for MG. As long as you are stressed/uptight/frustrated/angry, MG is in HIGH gear. Sweetie, since I have first seen you post, you have not ONCE been calm. Love you, love you, love you -- you are SUCH a NORMAL teenage guy -- but, this does NOT "meld" with MG.

If you can somehow figure out HOW to get some PEACE with this BEAST, I truly, sincerely believe that this horrible EXACERBATION will calm itself down, your antibody production will kick OUT of overdrive, and you will go back to some semblance of normalcy. Will you be 100%? NO. Will every day be "da bomb"? NO WAY!! But, you will more like the old Tyson. I truly believe that.

Now, how long does an exacerbation last?? Three months for me. So, I am telling you that PROBABLY -- you ARE gonna have to be a "couch potato" for the rest of the winter!!! If you do a REALLY good job -- and REST PEACEFULLY -- you "might" be able to start "being Tyson" again by the end of March.

I know that we get angry in here when docs send us to psychologists or psychiatrists -- but, sweetie, I FIRMLY believe that EVERYBODY would benefit from some biofeedback/visualisation/cognitive therapy -- if nothing else, it ROCKS just to have somebody LISTEN to all of your problems and KNOW that it will be kept completely confidential.

A good counselor or therapist could give you coping skills to keep you from getting frustrated about having to REST. You may already be seeing somebody because of your mom and dad -- if not, ASK your aunt and uncle if could see somebody for some relaxation techniques. You REALLY need them.

Again, I feel VERY optimistic about you -- and I am a pretty seriously bulbar MGer who has had some scary respiratory problems. When I am NOT in exacerbation, I'm able to build up to walking a couple of miles a day (I'm 53).

Jana- Why do you think my neuro is wrong? I know it seems bold of him to say that, yet is his job. Id like to think hes wrong also, but maybe hes not, and i need to be careful for i could get into alot of trouble with this progression of my symptoms.

I do have a therapist and go every week, yet theres nothing ive found except for excersizing that helps me with this. and with this new information, i cant even begin to do that.

So what next?

I believe im in having an exacterbation aswell, yet pred. should be helping me and its not. Thats why ive opted to see a specialist at duke or unc to see which strand I have.

I am getting an antibody test, my neuro thinks i may have the strand which is very hard to treat. So, saying that, this is where my trouble may be coming from

Thanks for your feedback:)

Tyson, I think your neuro is spot on about you doing nothing right now. It didn't sound to me like Jana is disagreeing with that (right, Jana?). It's the coming to terms with the fact that you have MG and it is SUPER BAD for you right now that is important.

Having been to the point of pushing MG too far, I can say that you don't want to be there. It takes so much longer to recover, like Jana said. You can take MONTHS to recover and then be "fragile" after that. Maintenance is the key with MG. Hmmm, that rhymes! ;)

A neurologist is not a pharmacist either. Why neuros are the most arrogant bunch of doctors on the planet is beyond me. Did he personally look up Prednisone and Accutane? Mrs. D., who knows about drugs per her career, told you about the risks in another post. Yes, stress - like Jana said - from acne can "take out" a teen! But so can a heart attack. Yes, call your pharmacist and make them look it up not tell you an answer from "memory" or by using their "best guess."

Accutane effects hormones. Hormones effect MG. Maybe the Accutane, even though there are no studies on it and MG, is making your MG worse. I took Accutane - there, I admit it - when I was younger. I remember feeling like a piece of crap. And I've had MG my entire life.

I'll bet your neuro only cares about you staying on Pred, which is very good of him, because he is worried about how you are doing. And he is probably worried what stopping Accutane may do to your MG. I'm personally worried about what Accutane is doing to the effectiveness (too little or too much) on Pred. And I am no expert on this either!!!

The good news, Tyson, is that you are ALIVE. I think you should try to keep it that way!!! And you sound like the most well-rounded, intelligent and funny 17 year old. And good looking. ;)

It completely sucks that you have MG at 17. Totally. Ben Stiller was in this comedy years ago where he was a Rabbi and told this kid - about his voice changing while having a Bar Mitzvah - that he should "love that it sucks." Really embrace it and say "I love that it sucks." Sometimes it helps to call "the beast" as Jana said what it is. That's it's horrible. That it could kill you and quickly. That everything else doesn't really matter - only taking care of yourself does. Because, what if you do have that remission? What if you can lead a more normal life but for now you have to pamper yourself?

Keep the hope and faith. Again, your friends will understand. Just say to them, "Do you want me at that game or do you want me to live?" If you were my friend, I'd stay away from the game with you, sit on a sofa or recliner and watch a game on TV. Or a movie or whatever. And not even talk if it wore out your speaking/breathing muscles.

Your neuro is right about you being "fragile" right now. So do your best to be okay with that. How about thinking about yourself as Merlin, you know, from King Arthur. Maybe you are living "backwards" and you will get healthier with age!!!

:hug:
Annie

Oh, and a primary doctor can order PFT's too. Just make sure they do the diffusing capacity and the MIP/MEP too.

One more thing. Your primary doc can check the following tests to see how "thick" your blood is: ProTime/INR, C-Reactive Protein and Fibrinogen. To see if the Accutane is thickening up your blood, in combo with the Pred. Pred alone is a big risk.

"with some patients, they can excersize and maybe they'll have a bum leg, or eye after, for thats all this disease affects them w. Yet, you arent allowed to excersize AT ALL. No yoga, no walking, no running, no lifiting weights, no nothing, for I think its a life or death situation here, and you need to take this very seriously. If you push yourself, or even walk too much, you could without symptoms, have your lungs shut down, and not have time to get to an ER, and die. This is uncommon, yet your a patient that has to deal with it.'

Tyson, sweetie, maybe I MISUNDERSTOOD what you were saying -- I got the impression that your neuro was telling you that this was how you were probably going to have to live the REST of your life. THAT'S what I think is WRONG.

Annie is DEAD ON RIGHT -- I DO think that for RIGHT NOW you need to do NOTHING -- follow doctor's orders as closely as possible. Exacerbation IS serious business -- I stay in the recliner during mine (when I'm not asleep in bed at night).

I don't mean to sound like a "know it all" -- trust me -- I "ain't". But, living with MG gives you a major learning curve -- and I've learned a lot in the past couple of years. I was teaching one day -- flat on my fanny the next -- and doing NOTHING at all for SIX MONTHS -- yep, that's how long my FIRST exacerbation lasted BECAUSE I fought it tooth and nail -- sort of like YOU are doing.

MGers seem have a lot in common -- we often have type A personalities -- we go-go-go. I didn't have an "off" switch. Well, let me tell you, MG GAVE me an "off" switch. I HAD to learn this -- and I'm trying to SAVE you the TROUBLE and GRIEF of having to go through this yourself.

You MAY have a "hard to treat strand" -- but, I am doubtful. Again, I've been around a LOT of teenage boys -- and the jocks are the MOST hyper, type A of them all.

As for Prednisone HELPING -- sweetie, did you know that Prednisone can actually HEIGHTEN your anxiety -- like a MILLION TIMES?!?!?!?!?! So, even though it may be "knocking" down your antibodies, it is ramping up your stress -- and making your body produce MORE antibodies -- an endless ROLLER COASTER.

Let me say this AGAIN -- the STRONGEST medicine you have is WITHIN yourself -- I PROMISE!!

As for your therapist -- get him or her to try you closing your eyes -- breathing slowing and regularly -- picture the most peaceful place you can think of -- find some "nature sounds" to listen to on your ipod -- clear your mind -- try to do that ANY time you feel your neck or shoulders getting tense. Mention this to your therapist -- they will KNOW what I'm talking about -- and lead you through the steps, ok??

Also, get them to show you the calming place in the palms of your hands -- you can close your eyes and rub the area firmly with your thumbs -- it will calm you down almost immediately. Alternate hands while taking slow, deep breaths.

Is there a dog or cat in your house? Pet it!! Fantastic stress reliever.

BTW, Tyson, I feel pretty "safe" in my "diagnosis". We've got three months to see if I'm right. If you aren't feeling stronger by say, the first of March, then I am WRONG -- and you should NOT start SLOWLY trying to rebuild your strength.

Me, after an exacerbation:
Weeks 1 and 2: walk 1/4 of a mile per day
Weeks 3 and 4: walk 1/2 of a mile per day
Weeks 4 and 5: walk 3/4 of a mile per day
Weeks 6 and 7: walk 1 mile per day
Weeks 8 and 9: walk 1 1/2 mile per day
Weeks 10 and on: walk 2 miles per day

See, it takes almost as much time to rebuild after an exacerbation as the actual exacerbation lasts.

Main purpose in life -- AVOID EXACERBATIONS!! Stay AWAY from sick people -- do NOT get a cold, flu, stomach virus, infection, etc.

Remember, I am NOT your doctor -- NOT trying to give you medical advice -- just trying to help you see the light at the end of the tunnel. I truly believe that you ARE gonna be ok. You are YOUNG -- and that is OVERWHELMINGLY in your favor!!

(((HUGS)))

I completely agree with Jana, about not doing anything right now, i know it can make me bad, and I almost went into crisis doing so this past week. So right now, yeah id say im in an exasterbation state, having trouble swallowing yet not to the point of choking, etc. But i havent done any excersize in a WEEK. thats BIG for me...

He did look it up, and I asked my family doctor, she also says she sees no problem with the two combining. I texted her yesterday (shes a family friend) asking if she would do that blood test which you suggested, she said she will get me in this week and do it.

I know stress is a big factor, and ive got plenty of it, and not knowing how to deal with it, without excersize is going to be a big problem. I need to get control of it, yet i havent figured it out yet...

My neuro just doesnt want to give up on the pred, but he doesnt believe its going to work, he wants to try this last month, and if it continues to make me more/not help...im going off it, says he.

Im getting a call from him tomorrow about plasmapheresis, which im antisipating greatly.

I know, i am still alive, and im happy for that. But i want my old life back. (Dont we all?)

But thanks for all your help Annie- Im looking into the PRED vs. ACCUTANE aspect.


Hope you feel well.

No no, He hopes that i dont have to live my life like this. But he isnt sure, for I might have that weird strain this is very difficult to treat, but knowing if i have it or not will make it all the more easier. Thats why im going to see a specialist at duke soon. I hope it narrows some stuff down...

You arent coming across as a know it all, dont worry:) I appreciate it. But, I havent done excersize for a WEEK. Thats big as i said before to annie.

I thank you alot, for trying to help me learn about my off switch. But, its just hard to get a grip on, and maybe I dont have the weird strain. Yet if i do, it could explain alot more, such as why the pred. isnt working.

I see my therapist every week, ill ask her about it on wednesday. I do have a dog, yet I prefer playing xbox to get my frustration out now:) Ive got it set up at the end of my bed, and thats what ive been doing all weekend. Yet i told myself i would never become one of those lazy couch potatos, ive learned i have to, to save my life:(, at this point.

But im manifesting that in 7 months, my thymectomy will work, ill have a normal life, etc. But if that doesnt happen...im not sure.


Thanks for everything Jana.

How are you feeling?

Hey Tyson,

You have a great head on your shoulders for being so young. I think if you follow your neuro's orders, even if it means being a 'couch potato', you're going to come out of this feeling so much stronger. I do hope you see results of the thymectomy in 7 months, but don't get discouraged if it takes longer. It's different for everyone and took me 2 years, but what a difference it made. So hang in there during this delicate period and know we are all pulling for you!;)

Hugs,
Pat

Tyson, I'm feeling ok -- thanks for asking!!

Since it looks like you are gonna have some extra time on your hands for a couple of months, what about getting a "jump start" on your medical studies (you want to be an anesthesiologist, right?)? (Yep, you can TELL I was a teacher, can't ya?? Always trying to get somebody to study -- LOL.) Seriously, though, A & P is a killer in college (one niece is studying nursing and the other is pre-pharmacy and they complain ALL the time). If you could go ahead and start learning at least those bones and muscles NOW -- it might free up some time in college -- give you a little soccer time when you ARE feeling better.

neuro app. tomorrow
 

Hi Tyson,
Wow what a roller coaster you have been on!!! I truly admire you for being so level headed at such a young age. My heart breaks for you having to deal with this at 17. I couldn't agree more with what Joan Marie posted once about wanting to reach through the computer and hug you. I don't have much to offer except to tell you to please not take what the Dr. says as a permanent sentence. There is absolutely no way to know where you will be or how you will feel in time. I think you are very smart to be a couch potato right now. I think it was Jana that mentioned so many of us being type A personalities. She is dead on with that!!! I KNOW I fall into that catagory.This group is so supportive and always here when you need to vent, feel depressed, stressed, sick or whatever!!! :grouphug:I love your spunk and can tell you are a true fighter!!!
Kendra

Thanks Kendra- Im trying to keep somewhat of a positive att. about it all, yet as you now, its kinda hard:)

How are you feeling?

neuro app. tomorrow
 

Tyson,
I am hanging in there. Thanks for asking!

Yes it is hard to keep a positive attitude, especially when you don't feel good. Luckily we all have each other for support. It is so nice to talk with people who truly understand what living with MG is like.
Kendra