Quote:
Originally Posted by jana
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).
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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