Hello all- So just a quick update. My MG seems to be under control to the best of its ability, because of the plasmapheresis, yet i was diagnosed with chronic sinus infections, so the plex did not work as well as it could have. But right now, only getting tired when brushing teeth and washing face. So its not bad right now, yet im hoping the cellcept starts workng after this plex, if it doesnt, i guess its plex for the rest of my life, or until, if the thymectomy works..

But, today i had a cardio app. Dr. Carboni at Duke childrens center. He looked at all my past history, saw all my EGKS, and echo, etc. He couldnt see anything wrong, so then continued with a stress test on a treadmill..that was so hard on my hips, (weak from MG) But everything except for being dizzy after 11 minutes, and my hips giving out, and my blood pressure being bad, it went well. He saw nothing wrong.
Yet onto the blood pressure. At rest it was something like 136/50. Then when i was at the peak of my stress it was 193/43. During it, the top would go up, and then the bottom would continue to go down. after resting when i was done my bp went to 134/86. So it flucuates alot.

BUt, he thinks it may be something to do with antibodies from my adreneline that go wild when i excersize that makes me have headaches and get dizzy after doing so. But hes going to test for that, in a month because the antibodies wouldnt come back positive anyway because of plasmapheresis.

So im on a closer road to finding out whats wrong.

But, i have a 30 day heart monitor on, so thats annoying

Hope you all feel well.

Hey, Tyson, wondered how you've been.

If you are having chronic sinus infections, has anyone thought to do allergy testing?! Seriously, can you find a very good allergist to do some basic tests? You can have a higher heart rate if you are having an allergic reaction. Have they done a CT scan of your sinuses?

Can you clarify something? What I'm reading today in posts is making me feel like I'm on crazy pills. Antibodies from your adrenaline? What the? Do they think that adrenaline increases MG antibodies? Why aren't they doing the metanephrine, etc. tests to rule out a pheochromocytoma?

First, it's absolutely not true that your antibodies will all disappear from plasmapheresis. That's a goal but not necessarily the reality.

There's a little something in medicine called a "differential diagnosis." There's one for high blood pressure too. One of the main causes of high BP is renal artery stenosis. When they do plasma, they use the main artery that goes through the kidney highway. A simple duplex ultrasound of your kidneys and those arteries can rule that out. Remember those odd reactions you've had while having plasma? What if there is a narrowing of an artery down there?

I'm seriously scared for you. No, I don't mean to scare you. This is what my cardiologist said to me, before I figured out some generic drug was making my BP high - even higher than yours. Systolic was 228 after TWO minutes on the treadmill and almost sustained V-tach. She said that the brain and heart don't care what is causing high blood pressure. They'll just have a stroke or attack whether you know or not. Why the heck has no one said anything about a BP drug? Because they're afraid it'll tank your MG?

Did you SEE the results of your stress test? Again, I'm concerned that they aren't telling you everything. Nope, not paranoia just experience.

Well, I hope you stay hydrated, stay away from sodium COMPLETELY and look into an all whole foods diet. And keep taking the calcium and D every single day, twice a day.

I hope you'll be ok.

Annie

Annie- They are going to do a CT SCAN for problems due to this 4th sinus infection Ive had since jan. Getting quite annoying.

Honestly, i have NO idea what he means by my adreneline being the cause of my dizzyness and headaches after excersizing...on the stress test, i was getting SO tired, and started getting dizzy. But they think after I get off prednisone it will magically go away. I hope so. Im still at 30mg tho.

yet, no they are not doing tests for that.

How do i bring those things up to my doctor? I dont really know how to say any of that. Could you possibly make a list that you think i should ask him? If not, no worries, its completely fine, just would help me out

Im also scared for me, but they continually say hardly anything is wrong. But theyll find out the hardway, maybe i suppose. But im glad you think something is wrong, and its not just me. - Oh funny thing. Found out my cardiologist is my neighbor. Weird huh?

Is it possible for me to stroke out or have a heart attack if my BP goes too high when excersizing? When I had only went about 11 minutes on the stress test machine, it was 193/43. Would it continue to increase? Having me go into attack? Thanks for any info on that..

But, no i didnt see them, but my aunt was in the room and they never pulled her aside.

Today- my eyelid was VERY droopy, all the way closed. My breathing was affected, probably the heat, but i dont think the plex worked so well last week because of the sinus infection, so i think it probably worked a little, but not very much because im starting to get weak again. And im calling again in the morning, because my double vision was also bad today.

Also- I have had chest pains, and recorded it on my loop monitor, called and played it back to the people who are on the other end of the line, and every time have said im fine..
so i keep getting discouraged.


Yet, im sorry your bp was ever that high! i bet mine is when i play soccer, which im not going to do if you think its putting it higher than 198.+ ill ask my doctor first.



But THANK YOU very much for your response

Hope your doing well today.

Tyson, I am sorry if I'm ever too emphatic or blunt. I simply don't like the attitude you're getting that "Oh, yeah, we did these tests, they were fine so you are fine." That's total BS.

It's one more reason you should NOT be exercising!!! It doesn't matter what is causing a high BP. And I simply don't understand why the cardiologist is not addressing that. Maybe your young age again. Do you know how soon your BP went up? Did it go up slowly?

Again, I think you need to see all of these results yourself. Really look at them and think about them. It stinks that you have to do that but I honestly believe that we patients can see things that doctors might not be able to, whether that's due to prejudice or pooh-poohing or whatever. And it's a great primer for medical school.

My cardiologist knew that renal artery stenosis absolutely needed to be ruled out in my case. A nephrologist (kidney doc) ran the test. It's a specialized test, not the regular type of ultrasound, and there are only a few people who know how to do it and do it well. Again, it's a duplex ultrasound of the kidneys and their arteries. They measure the size of the kidneys too.

And you always have to look to drugs you are on for any symptoms. It's possible that the drugs or a combo of them are causing a high BP. Do you know if your BP was high before the drugs? Before Accutane?

What is interesting about the whole ECG monitoring and chest pains is that an ECG doesn't always show a "cause" of chest pains. If your heart is structurally fine, that's good. But it still doesn't give an answer. I'm still betting on this being more than one thing. You do have thicker blood, probably mainly due to the Accutane. So staying hydrated is a must.

Why hasn't anyone even thought to say, "Hey, Tyson, why don't you keep some baby aspirin around?" You need to get the okay on that one but bring it up. And what about BP drugs? They may actually make things worse. And going off of BP drugs can spike your BP. It's ALWAYS best to figure out what is causing a medical problem before throwing drugs at it. Well, there are lots of exceptions to that. Like people having a heart attack or stroke.

Didn't your doc say to GO IN when you were having chest pains?!!!

I wish I were smarter. Maybe I could help more. This is basic stuff, though, that a cardiologist should be addressing. I wish I could find the PDF for the differential diagnosis for hypertension. Try Googling that and see what you find. It was very helpful to me when I had my high BP, which I don't have any more!

I'm doing ok. Saw my neuro today and it's hard to realize that I'm stuck between a doc and a hard place (MG). I can't do more drugs, so I have to deal with not doing what I want and balancing life with Mestinon. Not very happy today but I'll get over it.

Annie

Your not too emphatic. Your the perfect amount of emphatic. But what else am I sipposed to do? I dont know what to do...my aunt is very distant in the process of my chest pains she doesnt think anything is wrong because the doctors say so aswell...so i dont have any advocate for this.

My BP continually went up and within a few minutes, i was dizzy and bp was 193/43. I guess what Im asking is that if i excersize for more amounts of time, would i go into vtach??


Who do I ask for my tests? My reg doc? or Neuro? Or cardio?

Before Pred- my bp at rest wsa about 130/70. Now its usually 140/80...so maybe me just getting older. Yet im getting my triglicerides checked today to see if the accutane is messing with me.

I dont know what else to do, i dont know what other tests to run, i have no idea. But, if you can suggest them, then ill gladly go to do get them done

My neurologist said to go in when i had chest p ains, but my cardio did not.
What do you think of that?


This isnt your fault at all. -Dont be sorry, your a brilliant person, very intelligent so dont worry about that.


Im sorry that your neuro said that, its heartbreaking to hear. I hope you go into remission soon...Does mestinon not work for you?


This morning, and last night I was very weak. Im going to ask my doctor to get IVIG. Or more plex. unsure of which one i want/can have.
It took my 30 mins to wash the shampoo out of my hair this morning, and took 3 times to stop and keep going, (givng it a rest) also with brushing my teeth.



But i hope your okay this morning, and i hope things get better!

Hi Tyson,

I'm glad to hear that you're doing a bit better MG-wise....

Are you still taking accutane?

When I was on high-dose prednisone, I felt very disabled from the side-effects alone. My blood sugar would go up to 18 sometimes. MY BP would get very high too, especially after eating salty foods. I felt physically and mentally exhausted.

30 mgs of prednisone a day is still a lot of prednisone, enough to cause all the sx you're experiencing. I had the same sx as you. I'm now on alternate day therapy of 20mgs EOD. On my no-prednisone day, my blood sugar is normal no matter what I eat, I don't feel as dizzy, my BP is perfect.

In my opinion, what you're experiencing is from your meds.. I think that you're taking Cellcept, prednisone, Mestinon and Accutane, right? Prednisone alone can cause everything you're experiencing. I don't know much about accutane, but from what Annie and everyone else posted about it, it seems like an unpleasant medication with some dangerous side-effects, especially in combo. with other particular meds..

Good luck with everything, and I hope you figure out what is wrong.

nicky

Tyson, My situation is different than yours!!! If you didn't have couplets and triplets (bad PVC's - aka premature ventricular complexes) during your stress test, then you should NOT worry. Especially not about V-Tach!!!

I can't advise you on anything. You have to rely on your doctors to do that. Talk to your cardiologist. Ask them to go over the stress test results with you and show you what was going on or not going on. Ask them about why they think you are having high BP and what you should do about it. Should you be on an aspirin due to the thick blood? Do they even know about those test results? I bring stuff like that to my doctors so they all know everything that might relate to their speciality.

Talk to your primary doctor about drug side effects and drug interactions. And your Protime, CRP and fibrinogen results. Ask them what you should or shouldn't be doing about your "general" care. They are the "quarterbacks" of your care and should be compiling everything in one place and going over it.

Neuros aren't cardios. However, common sense trumps all specialties. Chest pain is chest pain. It is considered an emergency. Do you have an urgent care facility nearby to go to instead of an ER? I hate to even suggest that. What if you have a mild heart attack (For example ONLY - not saying you would) and go to urgent care. Wrong place for that. Chest pain is something only docs can determine the cause of.

I think it's reasonable to make sure you don't have renal artery stenosis. Ask your internist and/or cardiologist about it. Talk about a differential for high blood pressure/hypertension. All the "guesses" in the world as to why it's high won't help you. Yeah, it could be the drugs. It could be the thicker blood, probably due to Accutane. But what if it's not? It's always dangerous to make assumptions with health issues.

I think you need to write down a bunch of questions for each doctor. Make appts. and then go see them. Maybe start with your internist. Get answers to your questions.

I still think unchecked or untreated high BP is dangerous, no matter what your age. It adversely affects your heart, brain and kidneys.

I don't know what the answer is except lots of questions, talking and, hopefully, answers from your doctors.

Annie

Nicknerd- Well, i was doing better MG wise, yet sort of going downhill because of my sinus infection. Just choked on some water, but tried again and it worked. So unsure of what that means.

But I just resumed accutane again, and have a few more months left till it will be done.

I understand it causes all those symptoms, except for palpatations...does it? I dont think so but maybe.

I agree it could be that, but not whats making my systolic go WAY up, and dialostic go way DOWN, when excersizing. That doesnt make sense to me.

Thanks for ur response.


Annie- I know your situation was different, yet I know my BP went bazerk when i was excersizing and i know from experience that too high or too low, is bad...

I will start writing my questions down, and asking them.



I appreciate your contribution and am gunna talk to my doctor about many things that i have questions about. Ill make sure i ask them about the renal artery thing for sure..


Ill also ask about the asprin thing.


I called my neuro or nurse of my neuro 3 times today left 2 messages, they usually call back, yet didnt. Oh well..But, ill hopefully talk to them tomorrow if i can handle going to school, still hard to brush my teeth.

But hope ur feeling well.

Tyson,

I completely relate to your chronic infections and the MG misbehaving as a result...Precisely the same thing happens to me...I have plex, am doing fantabulous, then almost immediately get an infection, and am back at square one, sooner than later...Do you know if you have the infections prior to starting PLEX, or do you get them right after?

To tell you the truth, I don't know much about blood pressure, so it's good that you're looking into that...I have no idea what it means if the lower number is dropping....I've always had normal-to somewhat low BP until I had IViG...After that, my BP would get high at times, and I constantly felt bloated...After starting prednisone, it would get very high after eating salty/sugary foods and such, but otherwise, would be a bit high- 140/80, or something like that...It's pretty good now that I'm on EOD of 20mgs, around 120/80 again...

I have a question for you, but I'm a bit scared of the answer...I know that you exercise, so thought I'd ask...I was exercising today, and my heart rate was like 165-180...Is that extremely high? Made me kinda nervous, and felt like i was blacking out a touch...i decreased me exercise right away, so as not to pass out, and felt okay...Is that really abnormal? Mind you, I'm really outta shape and i have MG! What is your heart rate like when you're doing heavy exercise?

nicky

Well, those are the kind of questions you should ask your cardiologist!

http://www.madsci.org/posts/archives...0763.Me.r.html

http://www.aarp.org/health/condition...killer-_5.html

It sounds like a decrease in the diastolic is normal during exercise but I don't know how low it should go in response to the increase in systolic. Again, something for your docs.

At the very least, they should attempt to reassure you if everything is fine!

Annie