[tysondouglass]

Hey all.

Ive finally gained a little bit of energy to get on the computer, yet im ready for bed.

Im still in the pediatric ward in the hospital. Today i had plasmapheresis which didnt go so well. halfway through my viens collapsed, and had to stop, which caused alot of pain, and throughout the whole time i was doing it, i my blood pressure was really high. My hands started to turn purple and became freezing.

They arent really sure why it happened, but are trying again monday, and if it doesnt work will have to put a catheter in.

They also started me on prednisone today, and so ive been tired from that.


Hope you all are handling this crazy disease okay.

[redtail]

Hi Tyson,

thanks for the update. Sorry things arn't going too well.
Hope things improve for you on Monday.
take care, and rest, well I guess you don't have any option really :-)
Kate

[suev]

Thanks for the update!!

I'm sorry it's not going so well right now - but am really glad they are taking your MG seriously and doing something for you.

Hang in there!! It will get better.

Sue

[AnnieB3]

Tyson, I'll say it again - you need a full cardiac workup.

I'm sorry things didn't go well but they are taking you seriously and believe you need help. So that's half the battle.

Can I say I'm proud of you for seeking out help without it sounding too parental?

Some people with MG also can have a clotting disorder called Antiphospholipid Syndrome (APS). Someone should evaluate you for whatever caused that circulatory reaction. It's not normal. Have they done a chemistry panel on you looking at kidney function?

I hope you will feel better soon. Pred can make you temporarily worse, so take it very easy.

I'm sorry you have to be in the hospital but it's the best place for you right now. You probably avoided an MG crisis by doing so. It takes so much longer to recover from that!

Take care,
Annie

[tysondouglass]

Thanks everyone.

Annie- of course you can say it without being too parental.

They havent, should i mention it to them? i feel weird telling them I think i know whats going on, because they are the doctors, but if you think this might be happening, id love to get it checked out..

My blood pressure doesnt change much when standing up, though when standing up my pulse goes to 110 or around there.
Ive got a "falls" band on, and cant really go anywhere except for my bathroom, and at that, i have to call my nurse to come in.

I just dont understand why I am getting so dizzy when my vitals are fine, except for my pulse, and sometimes my oxygen levels go down to 85 but are normally 90-100.
Can i still have APS with good vital signs?

What would be a sign of it? I looked it up on the internet, but it includes stroke, which def. havent had i dont believe.

So, If you could get back to me with those ?'s thatd be awesome..


My neuro is awesome here, im glad hes doing something about it, aswell.

[suev]

Good to hear that you are feeling a bit better!

I would recommend that you indicate to your terrific neuro that you want to be kept 'in the loop' on his thoughts re: your condition and his evaluation of your symptoms. What is he thinking (good and / or bad) about your status at this juncture and what does he see as next steps.

Patients come in all different variations of 'want to know' - and most docs will only share the minimum - - figuring that if the patient really wants to know more, they'll ask.

Now I am older (so it is a little easier for me to be pushy) - - but you have a right to know anything and everything about what your doctor is thinking re: your condition, your symptoms, he's treatment plan, his prognosis (what and when he thinks the outcome of your treatment plan will be).

And you can ask specific questions (to eliminate the need of saying shouldn't I be tested for 'xyz'). Like maybe you want to know:

why is my blood pressure so out of normal range?

why is my pulse jumping so much when I stand up?

why did I have such a bad experience with the plasmaex - - and what makes you think it will be better on Monday?

what about my symptoms is due to the MG and is there anything else that you think may be going on?

what's with the lightheadedness and the dizzy sensation? Is that MG?

And anything else you can think of that you want to know

Remember, this is not about questioning the docs knowledge or capability. It is about learning and becoming an intelligent partner in your treatment and letting your doc know how involved you want to be in the decision making process.

Happy Hunting for the Answers! Please let us know how it goes!

Sue

[AnnieB3]

Well said, Sue. I was fairly preoccupied this week due to planning a party for a family member and didn't respond as well as you did. Little hard to do when you have MG. And exhausting.

That was pretty much what I was thinking. TALK to the doctors. That episode you had wasn't normal and there has to be a reason for it (the plasma reaction).

APS is only one of the many possibilities of what could be going on. I bought it up because it is fairly common in people with autoimmune diseases (meaning, not rare).

It's funny, I was a "high fall risk" when I had my crisis but they didn't do anything to make sure I wouldn't; like what they are doing for you. You are getting great care.

Whatever is going on, besides the MG, they NEED to figure it out soon. We can only throw things out there but they are the ones who need to do the work.

I hope they can figure it out. You just try to "enjoy" your time there. Thanks for the update.

Annie

[erinhermes]

Hi sweetheart!

I am so glad to hear you are feeling OK and are SAFE right now!

I hate the plasma exchange as well. I had a BAD reaction to the last one and will NEVER allow anyone near me again with that machine....EVER!

Make sure to write your questions down - that way you won't forget anything. You have a right to know what is going on right now and what your dr plans to do in the future.....after all it is your body!

If you DO have to get the cath just take a deep breath and relax - easier said than done I know but it will make time go by faster. You can also ask for pain meds.....

Hang in there, sweetie! It will get better!

Big hugs!
Erin

[redtail]

I would have to agree with all of the above posts, you can never know too much about you own body and what is wrong with it, also what the dr's are doing to it. It really is our right to know. I know its hard sometimes asking questions, but after all how do we learn whats happening.
Hope things are moving along for you
keep taking care
Kate