Since all of us with MG have breathing problems to various degrees, I wanted to post some information about hypertension that I have a whole new appreciation for lately. Warning: This may be a long post! And I am not putting websites on it yet. I think if you want more info, you should look it up or talk to your doctors.

To make a long story short (why are they always long?), I have hypertension. I've had low blood pressure my entire life until about 2004 when I was given too much fluid while on a drug called DDAVP (for diabetes insipidus, aka water diabetes). That caused capillary permeability which caused edema, which I haven't gotten rid of since. Or should I say that no doctor, even though I've asked, has really had a clue how to address it.

I actually don't know how long after 2004 the hypertension began. Why? Because doctors do not take blood pressure in BOTH arms. They only take it (usually) in the left arm. They should be taking it in both of them. My right arm is significantly higher than my left (15 to 50+). It's called "Interarm blood pressure difference" or IAD. "Normal" people can have one arm be slightly higher than the other, usually about 0 - 15 more. Some studies have said that whatever arm you write with is higher.

There is a great chance of having an arterial or venous problem if your IAD is way off. And it's the higher blood pressure that is your "true" blood pressure. So if your left arm, for example, is 115/70 and your right arm is 140/85, then the higher number is indicative of your "real" blood pressure. AND you need to see a cardiologist if that is the case!

Now don't freak out if you have this problem. BP measurements can depend on lots of factors, like taking it right after a high carb or high sodium meal. It's best to have a doctor assess it. Although I have to tell you that my cardio missed this about me!

There's also something called "Ankle Brachial Index" or ABI. It's when they take your BP in your ankle and then in your arm on both sides. If the arm reading is higher than the leg reading, that's an indication of peripheral artery disease (PAD). Something that goes with PAD is called intermittent claudication. It's a crampy feeling in part of your leg (could be anywhere) that gets worse after walking a lot and better with rest. I'm bringing this up too because you may think it's just your MG when it could be this instead.

You can also have high blood pressure while you sleep. People with MG can have sleep apnea and that can cause high BP at night. High BP for whatever reason needs addressing. High BP can lead to all kinds of problems like edema, heart failure and kidney failure.

Last November, I all of a sudden started having PVC's upon the littlest exertion. It happened the same week I had kidney stones. Seems pretty coincidental. Calcification usually causes kidneys stones and calcification can clog arteries. Hmmmmm. Don't know why yet - they're still investigating all this. I had a holter, then an event monitor and then a stress test. Turns out I am having "malignant" PVC's called couplets and triplets. How could anything that sounds so cute be dangerous, right? Triplets are PVC's that occur three in a row. It's also called unsustained tachycardia which can quickly lead to sustained tachycardia and then V-fib, where you die if you don't get help like right then.

So, I have hypertension which no one knows the cause of. The hypertension is causing the PVC's. Because of that, I can't do anything really. And getting doctors to help has been like pulling teeth - out of their nether regions.

This is the point where doctors become lazy. If they can't throw a drug or procedure at you, they don't really want to do more. Hypertension doesn't just pop out of nowhere, especially if you don't have a personal or family history of it. And there's this little something called a "differential diagnosis" that doctors SHOULD do before they throw drugs or procedures at someone.

If you have a kidney problem, for example, and take an ACE inhibitor (a high BP drug), the kidney problem can get worse. A kidney problem is part of the differential diagnosis for hypertension. You can have renal artery stenosis causing hypertension, the #1 cause of high BP over age 50. Yeah, I'm that old (50). I thankfully do not have a kidney problem but for about ten very stressful days last month I was made to think I did. A stupid radiologist did not measure my kidneys correctly (from a CT scan) and had them at 4 cm less than they were. A very nice nephrologist did a duplex ultrasound and found my kidneys, and their arteries to be fine. A reduction in length of your kidneys of 1 cm or more is not good. The chance of there not being a problem is very small. I knew what my kidney sizes were in 1977, so I could compare. But, thankfully, they are fine.

Other things they look for in a differential diagnosis of hypertension are: endocrine disorders, pheochromocytoma, neurogenic factors like increased intracranial pressure, lead poisoning, oral contraceptive or estrogen therapy, licorice ingestion, alcohol abuse, etc. It is VERY important that a differential diagnosis be done for a couple reasons. One, if you can find a cause and remove it, no more hypertension! Two, once you start on a high blood pressure drug, it's near to impossible to get off of it. You can actually get worse hypertension if you do go off. And beta blockers and calcium channel blockers can make your MG worse. They can also make asthma, thryoid conditions and depression worse. They don't come without risks.

I'm telling you all this because people with MG can be more prone to having high BP due to breathing issues, apnea, drugs we take, etc. So investing in a BP cuff is a very good idea. You can have "white coat syndrome" BP at the doctors office where it is high due to nerves and may not reflect your day to day BP.

I also have a Nonin Sportstat Oximeter, which is rather expensive. There are less expensive versions, however. I don't know what I would do without mine because I know my "normal" O2 stats and know when my MG is getting worse too.

And Erin, this is for you. I don't have added sodium anymore and haven't since late 2005. I have drastically reduced what I have in foods and basically don't have more than about 200 mg.; some days more. Sodium will make any situation worse, especially if you are on Prednisone. It's really not necessary anyway. And if you are craving sodium, you may have an adrenal problem since that's one of the symptoms of it.

Hypertension can kill and it can be a "sign" that something else is wrong like coronary artery disease, renal artery stenosis, peripheral artery disease or some other problem. A GOOD doctor can help you figure it out. I could use those good doctors right now. I am starting to completely lose faith in their ability to do right by patients.

Anyway, if you have high BP, get yourself checked out pronto. Be your own advocate and check your BP periodically. A BP cuff is an essential "tool" for anyone to have at home.

I hope this was helpful and fairly easy to follow. If not, ask questions.

Annie

Hypertension Differential Diagnosis (very good article/pdf)

http://www.clinchem.org/cgi/reprint/37/10/1868.pdf

Thank you so much for this info. I run low & have trouble with Vegus nerve stimulation , heart stopes breifly & I pass out. I have done some real damage to myself hiting the sink in the bathroom !
My doct. are aware of the problem, but as you say, I have no help with the issue.
Mary

First of all Annie, let me say WHEW! I'm so glad the kidney problem was a human error problem! I was really worried out you.

Secondly, thank you for the post. It was very clear and concise, except I think I missed was the PVC stands for. Can you elaborate, please? I re-read and still couldn't figure it out...... Like I always say - I'm Old (even older than you - HA!).

Giant High 5, and lots 'o hugs to you!

Mary, It sounds like you may have an autonomic nervous system problem. Do you have POTS (postural orthostatic tachycardia syndrome)? Low blood pressure can be just as harmful. Have they determined a cause?

Becky, Yeah, I know, I was about ready to go strangle the radiologist. Ten days of pure hell imagining surgery and dialysis and a much shorter life.

PVC: Premature ventricular contraction. A lovely arrhythmia that is normaly "benign." Mine start going nonstop after only a brief amount of physical exertion. No one, and I mean not even the cardiologist so far, has a clue of why I have hypertension out of nowhere causing these little life-threatening turds.

Thanks for the high-5.

Annie

Thanks for this info. You have been a wealth of knowledge for me!!!

I had that lovely test last week...they hooked me up to about 10 blood pressure cuffs..different spots on my legs and arms. My blood pressure usually runs 120/73. But my pulse is always high 94-96...My family doc mentioned possible claudication when I was telling her that my ankles, calves, and feet. I had never heard of this...but apparently imy test came out normal...I am not sure where this numbness is from...I do not drink, smoke, or have diabetes....

She said that she is concerned about my thyroid antibiodies now...as they were high...but all thyroid levels are normal. Now, she is sending me for a thyroid uptake scan and ultrasound.

I am just trying to figure all this out...my neuro thinks this is all separate from my MG...it is just so funny that all of this is happening all at the same time??? I am just sooo confused.

Hi Mary,
I have dysautonomia, and some with this problem will faint. But fainting can be from many many medical problems. It may help, if you ask your Cardio directly what can be done to stop this from happening. It's very possible, that he doesn't realize just how bad the situation is for you when these spells happen.
What kinds of testings have they done on you? Did they do the tilt table?
Hope you'll get some kind of treatments soon.
Love Lizzie

Lizzie, I thought you might've put info up about pulmonary hypertension!

Pulmonary hypertension is also a risk if you have MG. They don't know much about how it comes about really. And they don't have a "cure" for it. As Lizzie can tell you, it's a very scary diagnosis because of the odds that it will only keep getting worse.

Don't underestimate the importance of taking your blood pressure. My Dad had high BP for years due to rheumatic fever that destroyed his aortic valve. The doctors didn't check BP back then like they do now. He ended up with kidney failure.

Mary, I wish someone would do a study about MG and the autonomic nervous system to see how many of us eventually have a problem with it. The vagus nerve is a pretty interesting nerve. You would think it would only be a conduit for neurotransmitters like acetylcholine. Not so. It actually has a lot to do with our immune system!

If you have a Sam's Club or Costco near you, their BP monitors tend to be lower in cost than elsewhere. I like the Omron brand myself.

Annie

Annie,
The link between MG, and PH for me is that about 30 percent of my lung muscles have been affected by Myasthenia Gravis.
So, trying to exercise, and such with breathing issues, caused my heart to pump more..etc.. and I also have some regurge..in one of my valves. Anyways, everything is connected, and for myself this is how MG is Linked to my PH.

I just had a kidney biopsey yesterday...pretty sore today.
But that linkage goes like this..Myasthenia weakened lung muscles, cause pulmonary hypertension, Pulmonary hypertension causes loss of Oxygen, and loss of Oxygen to my organs, causes them not to work correctly, resulting in kidney disease.
Please people, keep up with your labs, your blood pressures, your over all health. Don't slack on any of it. It's so important.

Not that I did, but if I hadn't kept up with my appointments, who knows I may have gone on to be with the Lord by now.
Keep a good communication going with your doctors, it's so important!
Love Lizzie

P.S. I feel like I should have sung that song.."the leg bone connected to the hip bone....etc.." LOL

Annie, you are right on, I have a malabsorbtion problem for awhile now, lots of weight loss. Also the neuropathy & myopathy just found, the doctor said my automic nervous system was involved. In the hospital they actually saw my heart stop on the monitor, & came running in my room, I was hanging on to the bed. I get heavy sweating going on at night, I am like a furnace.
I let my overlap diagnosis go, just thankful for the mg control, now it is time to get back to the overlap, it is starting to do to much damage, It can't be ignored anymore.

Lizzie, No testing, but they have seen it happen on the monitors, usually when I just go to the bathroom, it is my nervous system, my vegus nerve goes, but it also gets my MG going, I am working on it with the reumy & neuro now. Lots of tests to go I am sure.
I know now, to just lay on the floor if I am in to much pain, becuase I will pass out !
dysautonomia, how has that effected you? I have never heard of that.
Anyone else with these problems?

Dysautonomia is a disfunction of the AutoNomic nervous system.
For the most part, it affects my heart. Kind of like the wiring goes haywire every so often, and my heart rate will fly up, or drop low. It also affects my sweat glands, my sight, and when I'm in pain it'll send a mixed signal as though I'm having an emergency, and my body will respond as though I'm running for my life. Heart rate goes up, pounding heart beat.
It is Not a panic attack, or like that, it's a physical medical thing that happens. Can get rather scary.
I was 28, or 29 when I was diagnoses with it.
I'm not 44.
It can also get completely screwed up after an EMG. Or, if I'm having problems, an emg, can snap it out of it.

Love Lizzie