Ayyyy
 

Hello all. once again.

Im not sure whats going on with my life right now.
It is the prednisone? The Imuran? The IVIG? The combination? Im lost. And i seem to continually be loosing more and more of myself. Im not myself at all anymore, I dont think. Im definetly not the same person I was a few months ago and its not a good thing.

The dean said it would be easy for me to get a leave of abcense and come back next fall. I dont want to. I want to be a normal 18 year old and do well in college. But even at college, im doing horrible.

My grades, suck. Im not sure how it even happened because before all of this, i used to be so smart and get such good grades yet now, it feels like i spend forever on concepts I should know and remember, yet i dont remember them.

I HATE that feeling.


Im sorry if im using you all as a venting panel.
Yet im not sure what i would do with myself with a semester off. What even happens? Everyone then looks at you like a weird ***. I want to start doing better, im trying! but i feel so foggy and out of it and not myself! Should i tell my doctor about these symptoms?

hope you all are well.

Tyson, I'm sorry you are going through this.

I honestly think taking a year off is an excellent idea. I took a year off after high school to work and get some money and perspective. I'm really glad I did. Maybe you could get some kind of internship with a clinic or hospital where you can really evaluate if being a doctor is what you want to do. Well, not only what you want to do but to figure out if you CAN do it.

There are many valuable professions within medicine that don't involve the grueling schooling and professional life that doctors have. I'm not saying you couldn't be a doctor but frankly I'm more concerned about you living to do anything right now. Like I said before, probably a few times, your brain and heart don't care what is spiking your BP or pulse. They will haul off and give you a stroke or heart attack anyway.

You absolutely need to contact your doctors, especially your neurologist. At the very least, they need to check both your liver and kidneys to make sure that the drugs you are on aren't wrecking your organs or there isn't a buildup of drugs in your body. A comprehensive metabolic panel is always a good test for someone with MG.

I do understand the anger and frustration over not having a normal life. There are days when it completely overwhelms me. I HATE not being able to work and do what I want to do. Some days I can't even do what I need to do. It's not fair, for you either. I'm willing to bet, however, that you can find a way to a life that works for you. It may not be your ideal but maybe a compromise is a good thing.

I don't have any answers for you. I hope you can figure out what is best for you to do. Whatever you do, do NOT beat up on yourself. You are not a failure if you don't follow the path you want to follow right now. In fact, you are successful for admitting to yourself that it's not working and that you need help.

:hug:
Annie

BTW, Screw everyone else. It ultimately only matters what YOU think of yourself.

Tyson,

Unfortunately, you are once again faced with having to make a choice between what you want to do and what you need to do. Your body (as indicated by all you have noted) is telling you that it NEEDS you to give up your wants (for now) and take care of it's needs.

All the wishing and will power will not produce the energy you need to get good grades. Between the MG and the drugs you are taking, it is rather amazing you have lasted this long! Your body badly needs time to heal and to achieve remission (which you may have a realistic chance at if you don't push it so hard you ruin that chance).

Take the medical leave. Do like Annie suggested. Explore, consider your options, rest. One year seems like forever to you - - after all it represents (at least) 5% of your life to date! But denying what is happening might just wreck your chance at good health and good grades for far more than one year.

I agree that it is lousy, unfair, and just plain awful to have to go through what you are going through. There is no denying it. And there is no changing it. It has to play out - and you are the one who gets to decide how.

Please keep your 'neuro family' in the loop. We may only be in cyberspace - - but we care deeply about you and want to help as much as a cyber-family can.

Sue

I am relieved that you are thinking seriously about a leave of absence from college.

There is another serious factor, I forgot to mention before.

Taking high dose prednisone and Imuran, create a reduced immune response. Living in a dormitory, or attending classes where people congregate, exposes you to many types of communicable disease. Community acquired pneumonia, meningitis (both viral and bacterial), flu, Norwalk intestinal virus, food poisoning from dorm dining, Mono (which is VERY common), and the list just goes on. For a person on immunosuppressant therapies, these common illnesses can take a serious turn.

Once you are off the Pred.... you will be more normal I think.

I would get a referral slip from your doctor there at school, so you can continue your IVIG at home. It might just be that the IVIG will be the most useful of what your therapies have been so far.

Good luck.

Tyson,
I'm new to the forum but found everyone to be very caring and helpful. I feel bad your having such a hard time with school, but sometimes you have to take a step back to move forward.
Only you can decide what road you need to take.
Wishing you all the best, no matter what you decide,

Rachel :D

Tyson, mate, I HATE reading this thread, hate that you are only 18 and going through this, it really is unfair. I know we are all going through it, but I at least got to 30 til I had to go through it.

I do agree with every one tho, especially Annie, you need to go to your Dr's and get checked out. And seriously think about taking a year off. Yes I know its hard, oh boy do I know how hard that is. I had just started a Vet nursing appreniceship, my dream job, I had soooo many hopes desires, could see myself in years to come doiing amazing things, and that never came about. But I have gone in a diffenent direction....

Its great you can come here to vent, please keep comming back, we all know what you are going through,
take care
Kate

Hi, Tyson, I just wanted to add my concern and support. I'm really sorry you're going through this. I try to remember to be grateful that my life is arranged so that I can make the concessions I need to without giving up the things I care about. I think, what if I had babies and toddlers to take care of, or what if I was supporting my family? I know that not everyone has it so easy.

If you decide to take a year off, do keep at the very front of your mind that you are just delaying the life you planned, and not giving it up. You are still getting your disease under control.

Abby

Tyson, I struggle with this also. The 2 things that help are a goods nite sleep and the great hypnosis program I discovered about 14 months ago or so. I had succcess with hypnosis when I went back to college as a single mom using slef hypnosis as a tool to get a break after school so I could have time with my kids but still have the clarity to study after.

Now I use "Headcleaners". If you type in Headcleaners hypnosis you should get Dr G Johnsons many hypnosis offerings. I use the one "Thoughts to Think to Soothe Fears". If I do it at least 3 times a week I does quiet and clear my thinking. He gives you exact texts so you know what you hearing head of time. He is really good guy. He did this so folks could get this without the high cost of going for appointments to get it.

I have tried other versions but the images on this one are best for me. I like the coat image. If you have trouble finding it let me knwo.

Annie59

Just got off the phone with my Neurologist. She said I am having a pyschiatric reaction to the prednisone and need to come off it asap.

So im starting tomorrow at 40mg a day.

URH!

Sorry i dont have the time to post right now.
Maybe later.

tyson, Im really sorry to hear about the tough time your having.

Tyson,
So sorry to hear that you are still having so many problems. I think you are making a wise decision by taking a year off from college. You are very frustrated and that is understandable but this is something that appears to be best for you right now. When you return, you will be able to return in better health which will allow you to do so much better in your studies.

Your dream isn't over, it's just delayed.

Loving hugs :hug:
Shari

Hey man,

If it makes you feel any better, I was discharged from the hospital last friday from the month-long stay, and I'm also going to take a leave-of-absence (or just withdraw from all my classes) for at least this semester.

The only difference is I'm in grad school so i guess graduation time greatly varies and it's not a big deal.

But even for college, many people leave in the middle and come back later, it's not abnormal at all. It is the health that's most important. Look at it this way: you want to be able to live normal for the next 60 years of your life, this semester is such a tiny thing compared to that.

take care!

Thank you all for your kind thoughts/words. I actually decided not to take any time off for now. im going to see how well my next test goes for ive been feeling quite strong.

Yet the side affects of prednisone are honestly the worst at this point. I NEED TO get off quicker that what she is doing, so im calling back tomorrow.


But, CPU- god no that doesnt make me feel any better, youve been in the hospital for a month:(. I feel your pain, though. I had that last year, and it sucks. So i hope your on the mend and get better very soon. Its no fun sitting in there. Although, i thank you very much for your kind words.


Tonight, and the past few nights ive been having bad tingling in my feet and arms. Yet another symptom I believe to derive from prednisone. They need to figure out a better drug than prednisone to use for this sorta stuff, and quick.


Hope your all doing well.

Tyson, There is no such thing as getting off of Pred quickly. If you do it too fast, you can have adrenal insufficiency and that can be life-threatening. I know the symptoms are bad but you have to take it slowly.

I realize this isn't what you expected. I hope the test goes well.

Annie- I know. I cut it down a little bit more today. 35mg. from 50. She said 40mg but i called her and left a message and told her im getting so many symptoms from it, that I NEED off now.

How to safely taper off long term prednisone:
 

The longer you have been on high dose prednisone, the longer the taper should be.

Otherwise, your adrenal glands cannot recover properly.

http://www.mayoclinic.com/health/pre...drawal/AN01624

It might take several months to taper safely for patients who have been using high dose for a long period of time.

BE CAREFUL, and do not do it yourself. You must follow your doctor's taper instructions.

I've now got many red bumps all over my fore arms and big ***** ones on my legs and buttocks. Some pretty big ones on my neck.

Yeh. I htttte it!

Tyson, You have to go to the ER NOW. It could be an allergic reaction to something. Do they itch? Are they warm? It could also be something like a skin infection/folliculitis. Please go in. Do not assume it's just another side effect of Pred. Any rash needs to be seen right away. Trust me on this one, ok?

Im at the airport in new York and have too much studying for mid terms to run to the we tonight. I will watch them, though.

Well, I hope it's not an allergic reaction and your throat doesn't close up while on the plane. Guess we'll see you on the news if it does. Take care. Hope the time with your Grandfather was good.