[cyclelops]

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.

[cyclelops]

Oh one more thing...my EMGs and nerve conduction studies, evoked potentials were normal! I never make anything easy....which, goes to show you, you can have a lot wrong with you and if you do not get to an autonomic center or epidermal nerve fiber biopsies....you do not get the benefit of getting this diagnosis ruled out....or treated at a point when it is still treatable....or at least the comfort of knowing it is not in your head.

Oh, and some one referred to me as 'disabled'....what, are they nuts???

[dahlek]

WOWSERS!!!

A lot of everything and then...no follow up. Sigh!
and more of same! - j

[Silverlady]

I will never complain again on here!!!!! (Yeah unhuh..unhuh )

Truly, you are one amazing person. I can't believe you are still walking. You truly are my hero! When I grow up, I wanna be just like you.

You know, ..when I met you (on the old Braintalk), I thought we could be sisters we were so much alike in symptoms. But I don't think I'm even in the same categories. Like you tho, I've learned to get my own medical test results and if I can't interpret them with help from here, I get another doctor to do it for me. It is so important to be your own advocate and learn, learn, learn.

You have just proved it.

Billye

[MelodyL]

Wow, a double WOWSER from me.

With all the stuff that you have going on, that you can get on a treadmill and go uphill and ace it, well you most certainly are MY inspiration.

I thought I was doing good eating FISH but you really make me want to do better in the exercise department.

I give you credit for going through all these tests. You are no scaredy-cat, that's for sure.

So keep up the good work, and maybe some day I'LL RACE YOU TO THE TOP OF THE HILL!!! lol

[cyclelops]

Well my big exercise for today is to get my dizzy body to the basement to wash my linen.....I am adjusting to the higher dose of pain meds so am dizzy and nauseated.

LOL....I am no hero...any one who want this, can have it....I would like to be a wimp...please.....This is just my life....these are the cards I was dealt, and many, many folks got a worse hand. I think every one, as they age up, will be amazed at what life tosses on their plates....both good and bad.

I would like to find the link...the smoking gun...that connects all these things, and it is out there, somewhere.

Believe me, it will be a blue moon before I ever run again....it took weeks to recover from that stress test.....I love the fact that the cardio simply chose not to discuss the echo with me....well he is an EPS doc...rhythms, not structure....so, why discuss structure....I am furious with him. Fortunately, I can get this looked at later, and in context of the neruomuscular disease, which was obviously 'not his thing'. I am not too in a panic over it, but it lends credence to some of my cardiovascualar issues.

It will eventually come out in the wash, or it won't matter...speaking of wash....gotta get the bedsheets in the washer, and then take another nap...I hope the meds settle OK....I figure two weeks to get used to this dose...it helps the pain, a lot.

It is still cold and raining here....the water is almost up to the bridge down the road....ugh....need warmth and sun...a few crocus are popping up! Brave little guys.

[cyclelops]

Oh BTW, don't stop 'complaining'....on my account...I call it 'discussion'. I posted only because I mentioned I had a lot of stuff done recently and I know folks were wondering what all went on, and I didn't know for sure until I read it with my own eyes. That is what needs to be done. Get records, read them yourself.

Billye, you and I do have a lot in common, always have, and if you have not had an echocardiogram recently, I advise it....check out your aortic valve. Your bone issues, are a concern to me, and obviously I have bone issues coming at me down the pike too.

My autonomic issues have been handled fine....the myopathy may need more time to develop and then, an institution that specializes in this is needed...they admited it....however, the lack of follow up on a variety of cardiac issues is stunning. Genetic testing will eventually get done, and when it does, it probably won't affect treatment....at this time, I think the only other comfort measure is BiPAP....I think I might sleep better with that.

I think we are all in the same league, and hopefully on the same team.

Partly what makes me able to do stuff like run like a maniac on a treadmill is the neuropathy....I don't know how bad I pounded myself until days later....some pain perception issues...same with the fingernail.

The diastolic dysfunction is what blew me away....that surprised me. I admit. That should have been discussed with me, so I was at least aware of that.....no need to treat it right now, as the treatment could potentially make my dysautonmia worse....that issue is going to take some real thinking thru....the less pills I pop the better....obviously, pushing fluids is NOT a way to handle my hypotension....I always wondered why I peed it out so fast....now I know. Of course when I mentioned it to docs, no one listened.

[HeyJoe]

There are two types of heroes in my book those that put their lives on the line for others and those who despite mind numbing pain and/or disability struggle each day and face what they must face with grace. There are a number of heroes here as i see it. I hate that word myself so i understand but it fits some of the people here.

[shiney sue]

JOE AS WE ALL KNOW MY FAVORIT WORD IS BRILLANT,WELL WAS
A VERY BRILLANT THING TO SAY., IT FITS MANY HERE AND ON
OTHER FOUMS. SO i WILL GET MUSHIE i LOVE HERO'S,AND THERE
ARE MANY HERE. WE ARE HAVING FLASH FLOODS BEEPING JUST AS I
WAS WRITING THIS. NAAAAAAAAAAAAA I'M A HERO!! AND SO
ARE YOU. SUE

[BEGLET]

I know that all of us are dealing with many issues - healthwise and otherwise - and no matter what word defines it best - everyone has chosen to perservere... what is admirable - we all have our demons we are struggeing to overcome and dealing with chronic or acute illnesses on top of those (or because of those) I truly think make each of us stronger - and learn from each other and gain strength from the same.... in any case - I get a great deal from the strength demonstrated on this forum.....


Changing subject - getting medical records together right now for past year and finding all kinds of interesting things I was never told - why the doc didnt discuss with me - I dont know.... even being diligent about keeping getting copies of tests best I can - I've found the MD letters from to another contain information we as patients were never told!

Also, just on the dyastolic dysfuction - I dont blame Cyclops for being frustrated - I had that obvious on my cardiac tests for years and even then given different reasons dependig on who and where the testing was done - it casuses in me shortness of breath, and its been attributed to autonomic dysfuction (only because I asked the doc by email for an explanation and he was kind enough to repond) - and to amyloid - which seems to be one of the first reactions in conjection with other indications - every time I see a new cardiogist they seem to tell me somthing different... very frustrating - and hard to knwo who to trust in this medical society...... they are also now doing genetic testing for inherited PN - a new nuero totally doubting the last one I had... we'll see - each day as you all know is a challenge...

Anyway, again, we are all hanging in there!!! I think sometimes thanks to those around us.... as long as we all dont hit a wall at once!