Sooo,

I guess it is time to update folks who have been waiting with bated breath, I am sure, to hear my latest news. No, I have not rescued any dogs lately, and I do not have fleas.

I did finally get my medical records, and I found out, doctors only tell you what THEY want you to know. Hmm

I left the cardiologist feeling I was the picture of cardiac health (and that he did the absolute minimum, which he did).......then I got my records.

I found out something about heart diastolic function, that you can have diastolic abnormality, (can be sorta normal) or slightly worse, diastolic dysfunction (not the worst but not exactly good) or of course much worse, diastolic heart failure....and have no one realize your have it because docs are looking for systolic function......It is good to know you have this, as if you have issues, docs could actually do the opposite of what they need to do, such as tell you that your systolic function is fine and send you home....or fill you full of IV fluids (not good).

I found out I have moderate diastolic dysfunction, which means I have an mildly enlarged left atrium and an E/A reversal. This basically means my left atrium is working harder than it should be, so it had to grow bigger, (a form of cardiomyopathy which does happen even to normal people under certain circumstances, not this type though) to push blood into my left ventricle, which of course, then pushes it thru the aortic valve to the body. Why the ventricle is not as elastic as it should be, is a mystery to be solved, by, a cardiologist with a more inquiring mind than the one I saw. Diastolic heart failure can exist with totally normal systolic function and is often misdiagnosed and missed. (You can ace a stress test with this and look totally normal but be in heart failure) If it gets bad, blood backs up into the lungs resulting in pulmonary hypertension...I am no where near that point....so relax..However this developed since 2005, when I had a right and left cardiac cath, which was normal....so I will watch this and I am glad I am in a medical profession....

I can't help but wonder how this related to abnormal autonomic cardiac tests. I am sure it does. I have a variety of atrial arrhythmias which I understand can accompany this condition. I have also had ventricular arrhythmias, but on this work up the atrial ones were predominant.

At this time, they are not doing anything about this....and as I said, at a later date, I will have this looked at again, as I do not think it exists alone, not in relation to myopathy nor neuropathy. I believe it is all related. This particular cardiologist was not up for reading anything additional, so, I'm fine, really, I'm fine.

This is a good reason to feel like your butt is dragging, believe me. It expalins a lot in addition to the hypotension and bradycardia.

I have mild calcification of the aortic valve, which is not unusual in my age range, however, given the great shape I was in, athersclerotic heart disease was really not something I had worried about tremendously, however, I found out that calcium deposits on your aorta are linked to low bone density, high occurance of fractures and osteoporosis....so ladies, find this out if you have an echocardiogram. Mine is mild and if I mind my Ps and Qs I can mitigate this. You don't 'feel' this, so it is something to learn about yourself. Obviously I can't take statins, or bisphosponates, so I have to watch what goes in my mouth, and keep this body moving......and keep the Calcium and D going....on the fence regarding continuing HRT...will have to think about it.

I aced my treadmill cardiac stress test, with a superior rating, which doesn't surprise me. I am a genetic freak. To do this you must run at the speed of 4.2 miles per hour on a grade of 16% (very steep) for at least a minute and a half (that can seem like a very, very long time)....after you have been walking at ever increasing grades and speeds for close to 15 minutes. I really can't do this in real life, and given the above findings, I am surprised I could pull it off. I had to stop due to foot drop and dorsiflexor pain....but, to be honest, I was finished and getting very cranky. Goes to show you what mind over matter CAN really do....I do not need any advice in that area...but thanks to those who offer. I truly appreciate those reminders..... I am basically a show off, and would have kept going till I fell off the back end and lost my dignity, but given I had a 35 point blood pressure drop at this point, THEY stopped me. Good thing as my ankles were black and blue a few days later, and my spine oscillated and my tibias ached beyond belief, which is why I no longer run. It doesn't feel good...it hurts way to bad, and I don't think you are supposed to get black and blue.

I have flunked a portion of every QSART I have had (quite a few), I have had in more than one location on my body, including, some zero readings...as in nothing produced...this is documented as a bunch of 'abnormal responses'.

I royally flunked my thermoregulatory test, by not sweating when baked to 107 degrees.

I 'flunked my tilts', all of them...abnormal to one degree or another, with all kinds of drops and bradies and pedal edema. No need to document, that I don't do well with the tilt. If life could be fully lived on the horizontal plane I would have it made.

I flunked one Valsalva with some blood pressure overshoot or something, had a few normals too.

I have 5 different abnormalities on my muscle biopsy, some of which could be myopathic disease, however, there is not enough of any one of the changes to proclaim a specific myopathic disease....you have to have enough of any one specific diseased cells......I have insufficient numbers of the different but abnormal cells...so it is termed a neurogenic myopathy at this point, which due to my other results I know is autonomic, sensory AND motor.

This biopsy, however, was in a totally unaffected location of my body, and fairly proximal. At some later date, they can try again....or dig around in a slightly more affected region, when they get the insurance company to fork out the dough or some researchers wants to do it on his/her dime. I do know it isn't fibromyalgia....it is myopathy....and it hurts...and darn if it doesn't feel like the decade that they called it fibromyalgia.

I already knew my epidermal nerve fiber density stunk.

I found a few interesting things in my colonoscopy which I will spare you the details, however, some muscle is denervated, that is supposed to work, when something comes into that area from the 'wrong' direction they are supposed to feel this muscle rebel....mine just sat there....subsequently it isn't real helpful with evacuation either. (You already know I had a positive FDG on PET, but that is being watched and thought to have been over read...so I am on it....and I had an abnormal salivary gland biopsy but nonspecific---that is old news)

I have an esophagitis of undertermined origin...not yeast, but this is how my nerves have typically behaved before they croak...they sputter, stutter and then stop....and likely some pills caught in there irritated it into what felt like a heart attack and a fire at once....oh, and like I swallowed a basketball...but that is now better....just feels like a marble.

And the fingernail is thought to be trauma.....I knew I nailed myself doing something, but, didnt feel it was THAT bad....alas neuropathy. My sinuses are left to languish a while, long enough that I just have post nasal drip at this time....so any infestation I have, is subdued.

Every lab test on earth has been run, and Celiac was ruled out in this EGD. All kinds of antibodies of every imaginable and unimaginable name have been run and come back negative.

So, I have opted for serious pain management, which I got, no argument, which is never a real comforting thing when you think about it.

At this point I do not care....it is working and I feel better already...I am opting for as much weight bearing as I can accomplish with my orthotics when they get here(some hold up right now, likely insurance). Using vitamins....gonna continue protein powder, co-q 10, B-12, multivit, calcium, D, mag...I think I will add flax seed. Stay on my organic milk and eggs and meat (when it appeals to me.) Will hit the pool, when the energy level goes up, and maybe even the bike if my pain management allows....my dream is to ride that highway to the sky....

If it ever gets warm here, I will plant a garden and fight weeds....should I get a chicken or two, or dozen?

Eventually, when I get insurance worked out, and we get more direction as this disease progresses and coalesces, which it is doing, I will get the CMT, and HSAMN (sensory, autonomic, motor) tested.

Until then, I have a lot of data, and if something treatable pops up, I will be on it....until then, I am all about quality....

Please folks, get your medical records....do not let anything go unread. You won't always be told everything they find, as some docs think you can not interpret what they write, and they may be correct...If you do get records, take them to a medical professional who can help you decipher what you do not understand.

That is my neuropathy-myopathy in a nutshell....a big nutshell.