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Old 10-09-2010, 08:34 PM #1
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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.
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Old 10-09-2010, 10:26 PM #2
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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.


Annie

BTW, Screw everyone else. It ultimately only matters what YOU think of yourself.
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Old 10-09-2010, 11:14 PM #3
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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
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Old 10-10-2010, 10:27 AM #4
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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.
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Old 10-10-2010, 10:28 AM #5
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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
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Old 10-10-2010, 07:57 PM #6
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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

Quote:
Originally Posted by tysondouglass View Post
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.
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Old 10-11-2010, 12:00 PM #7
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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
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Old 10-11-2010, 01:41 PM #8
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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

Quote:
Originally Posted by tysondouglass View Post
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.
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Old 10-11-2010, 04:43 PM #9
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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.
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Old 10-12-2010, 02:31 PM #10
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tyson, Im really sorry to hear about the tough time your having.
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