Please listen to Annie. Tyson I hope you get to the hospital SOON.

CALL 911! ...dont waist time here. Take care

Do you guys honestly think these are reasons to go to the ER? What if they just send me home? Ill feel like a faker.

Today i went in for more plex, and told them about my bloody noses, and they checked my bleeding time, and and some other tests, because they wernt going to do it if it was bad, yet, it was okay.

Something that started with an F was low..but dont remember what it was. They did it anyway, and im sitting at home now..
I was supposed to go to the beach with friends this weekend, for spring break but the doctors told me today i couldnt go because it would be too hot.
I feel so lame, to my friends. Because i cant go...we had plans for so long.


But, the doctor did say to go when i had chest pains, but i dont want to just go and then have it be nothing...


Thanks again.

Tyson,
I am really sorry that you have to deal with all this at such a young age. It is very hard to sit on the sidelines when you want to be in the game but you really need to understand that with MG sometimes you have no choice but to be a spectator. You have to listen to your body no matter what your mind wants to do.

You are not being lame if you cannot hang out with your friends on Spring Break. You are just making sure that you will be alive to see another Spring come. They are young and have no idea what the possible outcomes could be if you push yourself too much. True Friends will understand no matter how young they are. I'm sorry that you are missing out on the Beach but your doctor is right, Heat and MG do not mix well.

As far as going to the hospital, you never know when that possible "nothing" turns out to really be something. Don't take that chance. Chest pains can be very serious, go to the ER if you start getting them again.

As always, I will keep you in my prayers,
Shari

F as in Ferritin? It shows the status of your blood stores.

Well, you came for advice and then did what you wanted anyway. Typical teen!

I would be more embarrassed to wind up in a lump on the floor from a crisis or bleeding out. My Dad had a bleed while on Pred and immunosuppressants and needed part of his stomach removed. You never know if it's going to be a little thing or a big one. Doctors in the ER always tell me that they'd rather someone err on the side of caution. But, hey, what do they know right?

How do you "fake" blood coming out of your nose and mouth? You're not faking. And you have a disease that could kill you. I think they'll take all that and your other symptoms quite seriously.

Hope you will continue to be okay. Sorry you couldn't make it to the beach. I'd love to be at a beach right about now.

Annie

Thank you all very much. All your posts are helping me better understand thr logistics.

Sherri- thanks for your resposnse. It is hard sitting on the side lines. My biggest problem and fear. Hate hate hate it. But I agree chest pains can be very serious but I swear they've done every test to check for something wrong. Apparetnly not tho.

Annie- what would that mean if it were low?

I also would be embarressed. Yet I know I should have gone in because during that time I was having chest pains the ekg could have shown something. Oh well...
Sorry about your dad.
I know I'm not faking. And it sucks that I'm spending my spring break just getting plasmapheresis. Yet I guess id rather be alive...yet its unfair.

I know this is very serious and if I do get any chest pains or anything I am going straight to the er.

Hope your feeling well


they took very high precautions while doing plex today.

Hey Tyson,

I agree with alll that has been written, but would like to observe that because of all your experiences with this illness (the good - and the bad experiences) - - you are going to be an awesome doctor!! Hang in there!

Sue

Or, Sue, if he keeps pooh-poohing his own symptoms, he may end up doing that to his patients! Naw, you wouldn't right?

Hi, Tyson.

Iron deficiency anemia progresses in three phases.

First, your iron stores, reflected by your ferritin, decreases. If your CRP is high, like I believe yours is, it can make ferritin look even higher than it really is. If your ferritin is low, this is the point most good doctors will do what is called an "anemia profile" which normally includes things like serum iron, total iron binding capacity (TIBC), transferrin saturation, etc. Some will even run a B12 and folic acid level.

Second, Your red blood cell count goes below normal.

Third, your hemoglobin goes below normal.

Again, I would encourage you to get copies of your lab results. If they won't release them to you, maybe they would release them to your Aunt. You need to start seeing and understanding what doctors test you for.

Have your doctors recommended that you take Calcium and Vitamin D every day (I seem to recall that they did). What about flax or fish oil, due to the Pred? What about a multi-vitamin with iron?

Sometimes you have to take sensible supplements when you are on certain drugs. Vitamin C helps absorb iron but do not take iron (if you take an extra supplement of it) and Calcium at the same time (calcium keeps the iron from absorbing).

Annie

BTW, your disease is lame, NOT you!!!!

Annie- you know i wont do this to my patients.
Or id hope.

yet thank you for you information on the deficency, ill contact my doctor about this.

Tomorrow i have plasmapheresis at 8:30, and then an appointment with Dr. Juel, i will ask for my records of the tests which they have done, and let you kno.

I do recall my old neuro, wanted me to do calcium with the prednisone, yet Dr. Juel, said it was not neccessary.

Ill let you know how it goes.
Im going to post another one about how im feeling right now.


Hope your well Annie.

Well, Dr. Juel must think calcium and vitamin D are only necessary for women. What a crock. You absolutely need those two when you are on Pred. Have him look up bone density and demineralization. Good grief.

And Prednisone is an antiprostaglandin. We need good prostaglandins like those found in flax and fish oils for lots of reasons. They are great for the brain and help fend off depression. They keep the gel coating of the stomach and other mucous membranes in tact. They are natural anti-inflammatories.

Don't ever take what a doctor says blindly. Look it up, ask more questions. I'm not saying don't trust your doctor. I'm simply saying that they don't know everything and are quick to pooh-pooh patients. And, no, I don't think you would do that; I was being silly.

Annie