quick
 

Hi all. I'm at a concert. My doctor told me I might have an infection somewhere which was covered by my prednisone. And right now my throat feels like its closing and my nose is all stuffy. I'm having chest pains and really dizzy. What do I do? Or what woukd u sugguest?

I'm just freaking out a bit. I just got some water and its a little hard to swallow and I'm very dizzy shallow breaths. I'm worried that this infection is pissing off my mg and before the night ends something may happen. Yet I'm outside waiting for my friends. I don't understand how it crept up so quickly. And my eye is droopy. I took mestinon. 60mg before coming...it doesn't work.

What you do is NOT post on a forum. What you do is go to the ER.

There is no way to tell if it is H1N1, a cold or bacterial infection. GO IN. Doesn't matter what is ticking off your MG.

Be sensible. MG is NOT sensible.

Let us know how you are.

Annie

But now I'm feeling much better. Should I truley go in? My nose is a little clearer. I'm very close to the er.

Tyson, Do you get panic attacks? Some of what you are describing could be that.

When are you having plasmapheresis?

And did you mean that your doctor said an infection was "covered by your Prednisone" or that the Pred is masking the infection? The second would more than likely be the case. And being immunosuppressed makes you more open for infections. How do they know you have an infection? Blood tests?

I still think you are in denial. If you keep pushing, you will end up in the ER again.

The body becomes "worn out" after too much of this pushing it to the limit crap. Think about what the treatment of plasmapheresis alone does to your body. Now think of having to do that when you are 50, if you make it to that age. Yeah, I'm trying to scare you. You have to manage MG with not only drugs but with alternating rest and activity. Even if you reach remission, you still will not be able to "push" things or you may go out of it.

You have to decide what is best for you. Is your pulse high when you do the littlest things? Are you still getting dizzy, like say when walking? It's always better to be safe than dead.

But I think you need to back the heck off on activity. Maybe spend some time, out in nature now that it's spring, and really think about what you want your life to be. You can't keep pushing like this.

You know I care. But tough love is really what you need right now. Please slow down. Not stop but be realistic.

Annie

Annie- Im not having panic attacks. Something is wrong. Im never nervous, or panicky when these things happen, it was late, i was at a concert with many people, as it was hot in there, and hot out today, my MG probably was acting up, and with my infection is not helping my case any. They never declared me as having an infection, but gave me antbiotics. Im starting those tomorrow.

My plex is tomorrow at 10. I called my doctors emergency number, but he hasnt gotten back to me yet..and im just kind of wondering if they would see me tomorrow or something when im getting the plex done to asses what is happening..

Earlier i was also having blood come out my mouth, and nose. Not sure what that was from, yet im going to go to bed, and if my doctor ever calls back, ill do as he says.

Yet my hand is really weak, and im going to bed. my nose is so stuffy, i can hardly breath through it.

But my pulse does jump when doing something small, like switching around in bed, or getting out a seat.

I do get dizzy when i walk, when i dont feel good.

But, im going to bed.

Omg...Was it a lot of blood? I know that you're tired, but you should go to the ER...Did the blood come out during the time you were having the other sx?

BLOOD coming out of your nose and mouth?!!!! I hope you're not in bed yet. Blood where it shouldn't be while on Pred gives you a one way, 911 ticket to the ER. GO NOW.

What antibiotics are you on? Be careful, you can easily get secondary infections like clostridium difficile while on Pred and an antibiotic.

You need to be in the ER. Trust me, I understand blood/fluid issues more than most people. I can fill you in on the gory details some other time. GO IN NOW!!!! You seriously could bleed out if you have a bleed. I wish I had your phone #. Wake up and go in.

Annie

See, Tyson, Nicky and I are in agreement. That's two against one! ;) Go in.

I'm not in bed yet. But while washing my face....or trying to I had another bleed. It didn't last long but it came out sort of fast. I called the emergemcy number on my clinic card. I am waiting for a call back

Why are you waiting? It's not only that you are bleeding. You are bleeding while on immunosuppressants. I'd hog tie you and take you in myself but you're a few states away. Maybe I'll call my niece who goes to UNC and have her drag you in.

I have hemorrhaged. It isn't fun. And it's highly dangerous, especially for the heart. Just go in.

I should've told you to look your body over. Look for bruising or any red areas. If you are having trouble with clotting, that's serious too.

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, :hug:
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

I'm puzzled when I see how lightly some US doctors seem to consider osteoporosis associated with steroids. I agree with Annie, Calcium and vitamin D plus other medications (biphosponates for instance) are mandatory when you take high Pred on a long term basis irrespective of your gender, male or female... Otherwise you do risk severe problems, look at what happened to Erin with her multiple fractures...
One other thing, bone densitometry, I was prescribed such a test right at the beginning of my MG for reference, I already had a second one which was OK and I will take a third one within 6 months.
Maurice.