[tysondouglass]

The last couple of days have been very hard for me, as I seem to be getting alot of my symptoms back. The last two days- I have become so weak that I cant lift my right arm and my right eye goes completly shut. That hasnt happened for a good 7 months or so.

Earlier this evening in the shower I had trouble washing my hair, and body as my arm got tired.

Along with the arm weakness today and yesterday I had some diaphragm weakness yet when i woke up it was gone.

I have a question to pose....

so heres the story: I texted a picture of my eye to my doctor to show her the weakness, as she believes the Imuran is working great- its working better than the cellcept but not anywhere what I need it to be...school starts in a few months.

Anyway- she says it always looks like that..and it was almost all the way closed (which when i relax my forehead muscles it really is almost closed).

I did this all before my nap- yet when I woke up from my nap i felt better in terms of breathing and eye weakness yet arm weakness was still there...
She responded with- you need another single fiber EMG....this will be my 3rd.
I just dont know if im faking this all or if it is real? I know that sounds RIDICULOUS, but i feel like I should be able to deal with this weakness that I am having...but if im going to school again soon, for PREMED, i need to be able to study alot and not nap everyday like I am now!

So I guess my question is should i go for the EMG test and do you think my symptoms are real? Or am I making them up? I know thats stupid again...but idk. im at a loss here.


Im working with my mom 4-5 days a week...get up early get home early but go to the gym as well.....and I cant stop going to the gym...its my ONLY way to stay sain here my last 30 days before I move.


thanks for listening...

[Stellatum]

I'm really sorry you're getting worse. I can only imagine how frustrating this disease is for a college student, just getting started in his adult life and planning the future.

I'm puzzled about what your doctor is trying to accomplish with a SFEMG. I know you're seronegative, and that you're diagnosed on the basis of your previous SFEMGs--so they must have been clearly indicative of MG, right? What is she looking for by giving you a new test? Is she trying to find out if you're getting worse or something? Is she questioning your diagnosis?

Abby

[tysondouglass]

Abby- Thanks for you reply.

I just want to be able to do school work, have a job, and workout and I can barely work right now...just don't get it really.

But Im also puzzled at why she wants to do the SFEMG, she didnt say. I assume it is because so many medications have been tried and nothing is working as its supposed to. My first EMG when I hardly had any symptoms was VERY conclusive that I have MG- said so by Dr. Howard.

I am getting worse...and I believe its because I started going down on my prednisone..only 10mg for now but I think its probably enough as my body has known 50mg for over a year now..

thanks

[art chick]

Going down on pred has caused more problems for me than anything else. My body seems to really need it and it kicks up my MG and leads me going downhill faster than anything else when we drop it. I cannot get off pred even though I am on IVIG 5 days every 21 days.

I am seronegative too. My thymus was 6x10cm and they took it out in November but all my other tests were negative. My doc does NOT bother to retest me....he KNOWS it is MG and it cannot be anything else. You had a positive test! This sounds ridiculous and awful and I am sorry to hear it. I really think you need some answers here. I would ask first but consider a new doc. Why don't you just see Dr. Howard who did the first "EMG"? I am assuming you meant "SFEMG." That is very conclusive and specific for MG when it is positive. Sounds like trying that doc might be a good idea....

debra

[tysondouglass]

Hey debra- sorry your not feeling well either, this pred really does help me and you it seems..but i want off it. Im on IVIG every 30 days and then pred 40mg then imuran 250mg. I dont get why it just cant work...

I want dr. corse to do the immune system reboot. I know that someone else had this done at Johns Hopkins and I want it too. Ive tried too many drugs and Im sick of taking meds at this point..

Dr howard would not see me as a patient, he only sees older patients...so he says. Yet i saw him seeing a 16 yr old. Dr. Corse (who i see now) is very good and goes by the book....thats why Im having problems I think. I need someone who will go outside the box as I need special treatment.


Hope your okay

[busybusy]

Tyson, I don't see why you have to redo the test unless it will show if the MG is progessively worse. Your symptoms are very real. Having weakness will play a big part in your life, but don't let it rule out your dreams. When you plan a trip and map out the way, sometimes there are detours and the trip doesn't go as plan. But eventually, you get there even if it took an extra day. Please don't doubt yourself. Sometimes doubt can be our worse enemy. It messes with us mentally. (are we sick or are we imagining). There is no way a college kid would give up all the exciting things that college has to offer and enjoy to pretend they are sick. You have a wonderful career ahead of you. The path that you take to get there may be different from the one planned, but you will perservere if you keep believing in yourself. So often, I wonder if I focus too much on MG and if I bring on a lot of this myself. They used to say if you think about something long enough you can make yourself sick. I am learning this condition and it is not fake and you have to rely on how you feel and what you see. The weakness is real and I focus on it in order to regroup and do what ever is necessary to bounce back. Maybe you will be the doctor who can specialize in MG and help all of us and others who will be facing this challenge. I hope you will get to feeling better and try to stay positive. busy

[tysondouglass]

Thank you very much busy for this. It helps me know im not alone in thinking that the symptoms are not real. They are so real, and no one else around us can understand the realness of it. Its hard for people to understand...and I guess I cant expect them to, but i do. I know my path wont be the same as others, or even as I had planned, but right now I took this medical leave of absence to get better and to focus on my health and right towards the end of it, things are going downhill..not sure why.

I will never give up on becoming a doctor, i just know that I would do better if I had a medication that worked...wouldnt we all...

I know it is getting worse, and im not sure what this SFEMG will show that they other two didnt...but I want her to realize i need a different medication...so if doing this test again is what it takes...ill do it.

Thanks again for your reply.

[AnnieB3]

Tyson, Redoing the SFEMG is not necessarily about doubting the diagnosis. When an MG patient is on as many meds as you are and is still weak, they have to figure out WHY. The SFEMG is the only "objective" way they can do that. Antibody tests fluctuate, so even if you were seropositive, it would not be a good test to run.

They should, however, run other tests. And ask more questions, like what have these drugs done to your body "systems?" You may need an endocrinology consult, to make sure that your adrenals are properly checked and attended to if you start to taper pred. Do not leave that kind of thing in the hands of a neurologist! It's not their specialty and they have no business overseeing something like that, no matter how good they are.

This exercising thing is a bit obsessive compulsive, don't you think? It's not sensible, that's for sure. You know what the outcome will be - you getting weaker - and yet you continue to do it. Do you want to feel worse? Because you know it makes you worse.

I think Dr. Howard is "overbooked" in general. He teaches, he does conferences, research and clinical. Oh, and advises students. Where you may need to go to discuss stem cell issues is Johns Hopkins.

It's important for your neurologist to make sure whether this is MG or something else neurological or, again, another body system issue. Pred, for example, gets rid of the good prostaglandins in your body and may be responsible for your pain issues. If you aren't supplementing properly, like with fish oil, then you aren't getting enough GOOD prostaglandins for your body to fight inflammation. And don't underestimate what food is doing to your body. I remember what food I ate while in college. You have to be more assertive with your choices. Other hormones may be "off" and should be checked too, including testosterone. Your immune system may be too suppressed and could be adversely affecting things like white or red blood cell production, platelets, inflammatory markers (fibrinogen, CRP, ESR), etc. You need someone who will look at the BIG picture and that is usually a very good internist who does that. And are you on any supplements that could be interfering with your drugs? Do your doctors - every single one of them - know everything you are taking?

You are expecting a lot from your body, so you need to make sure it's set up for success. You have MG, you know. There is a "finite" amount of anything you can do. It's hard not to think you are invincible at your age, so maybe pull back on a few things until you feel better.

The more drugs you take, the more your body is "assaulted." Your liver and kidneys have to work harder. Your heart may be taxed more. So many issues can come up and you need doctors to look at more than just the MG.

I've seen one too many people get sicker and die, not from disease but from drugs and not enough good doctoring. Staying healthy is the goal here, not only taming MG.

Yes, I'm being a bit harsh on you but it's meant with the best of intentions. Please understand that I'm dealing with an "end game" with my dog, possibly due to inadequate doctoring, and my view is a bit jaded right now.

Just get yourself to as many doctors as you need to figure out what is going on, BEFORE drug or procedure options are thrown at you. Know WHY first. I hope you will figure it all out so you can feel better.

Annie

[tysondouglass]

Annie- I agree with your reasoning on doing the SFEMG again. I dont mind at all....I just want to be able to do all these things I used to...maybe never again.

Probably the exercising is a little over kill...alot maybe but my neurologst thinks i should be able to exercise with the numbers my labs are showing so again this is another reason why she wants to see me. She doesnt understand why im so weak on all these medications. Neither do i..

I agree Dr. Howard is overbooked..yet i was hospitalized 4 times in 3 months and he never once came to see me...he was 1 floor down. Dont really quite get that.


I dont know here to start with finding doctors who can help me find things that i am low on...i thought I was doing all I could at the moment. My parents dont understand the need for me to see other Dr's they think its all under control..
yeah right.

Having a hard time typing so im going to get off...hope your dog isnt at the end game annie..know that can be hard.

Your not being harsh, being realistic is more like it.

I should know today when I am going to fly to baltimore to see Dr. Corse.

Thanks

[mrsD]

I am going to put this link up again here.

It concerns long term pred use and what happens to your body, written by a helpful doctor:

http://www.gihealth.com/html/educati...rednisone.html

Prednisone is highly destructive to your metabolism. Changing diet away from junk food, sugars, and simple starches is essential to feeling better. Choose whole foods, high in potassium and magnesium to feel stronger. Adequate protein, keeps your blood sugar lower and you will have less spikes and fatigue.

Use this handy guide to choose foods low in inflammatory index, high in electrolytes, and protein.

http://nutritiondata.self.com/

Your doctor is not going to do this for YOU. You have to take control and do it for yourself. Get into some good habits and that will give you extra strength and energy to cope with the other long term factors of your MG.

Predisone is highly depleting of many nutrients. If you have a smart phone there is a new app for nutrient depletions available now for $1.99...

http://itunes.apple.com/us/app/nutri...432547190?mt=8

or an abbreviated version from the textbook by Ross and Pelton:
here:
http://www.chiro.org/nutrition/ABSTR...orticosteroids