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I Am Freaked Out...


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Oy vey :blink: -

I had my appt. yesterday with the vascular surgeon re. my purplish/black finger. The good news- no obvious cause for an embolus. However, he still suggests continuing treatment as though I DID have a blood clot with Plavix at least for the next 3 months. I also have to continue treating my hands and feet for severe vasospasms (Reynaud's) with Norvasc, a calcium channel blocker- which is giving me quite worrisome side effects. He feels this is all related to my connective tissue disorder & must be further explored. (I see a rheumatologist in early Jan.)

The bad news-during my appt., he mentioned that my tests (echo & MRA) were NOT quite normal, but did not explain the embolus- end of his focus. Huh? As I was leaving, I asked for a copy of my tests. The echo states: "There is E/A reversal consistent with diastolic dysfunction." I looked up diastolic dysfunction (DD) and it seems to be another word for heart failure. OMG- the doctor didn't even MENTION it to me. If I hadn't asked for a copy of my tests I wouldn't even know.

I have been running around 15 miles a week and doing some weight lifting & calisthenics. It has been getting progressively difficult & I had recently decided to cut back. I am trying to figure out what all of this means... I have read that some docs (Paul Cheney) says DD is consistent with CFS, hence autonomic dysfunctions??? An other explanation is excess collagen formation- connective tissue disease??? I should mention that the most obvious cause of DD is obesity, diabetes, high cholesterol, etc. I am thin, fit, non-diabetic & have LOW cholesterol...

A search on this site reveals that others here also have DD. From what I've read, it is NOT reversible and can be progressive. Treatment is aimed at stopping progression. I am FREAKING OUT. This sounds scary :( I'm also mad :angry: Medicine has gotten so specialized- the vascular surgeon did his part & didn't even MENTION this to me. Grrrrrr.

Any input would be appreciated. Forgive my rant...

Julie

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I have seen the print outs on those echo's and they are very long.

I would try not to worry until you have a chance to see another doctor.

I had a real scare after my first echo and also thought I was in heart failure based on office person reading it to me.

My internist got a copy through fax and went over it with me and he flicked the page and said this is a normal echo.

I have had at least another since and they gave me no cautions and that was at a separate facility.

In fact they told me to go home eat and start an exercise .

The one thing mine showed on the first that worried me was slight pulmonary hypertension.

That freaked me out but I had been talking nonstop to the technician so next echo I stayed very still and quiet.

The other was slight thickening of the left ventricle but I wonder if that happened carrying four babies.

I could feel the strain during that time.

My only word of advice is be gentle on yourself don't push it.

Remember the story of the tortoise and the hare.

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Easy Julie,

Just breathe! You KNOW how wonky we are when it comes to test results! How many things have you already been MIS-diagnosed as having? Do not freak out, yet. Follow up with your doc. Diastolic dysfunction is not a simple diagnosis. If you are concerned, go back to the doc who reported it with a long list of questions. Try to relax, you are taking fantastic care of yourself and you know it!

With peaceful thoughts and prayers!

Jennifer

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just found this from MECFS.org site:

Traditional measures of diastolic dysfunction are unreliable?

A key process in mapping out the cause of any disease is correlating symptom exacerbation with measures of dysfunction. If lactic acid buildup, for instance, contributes to muscle fatigue then as the muscles get more and more fatigued lactic acid levels should rise. Since exercise intolerance is one of the cardinal symptoms of heart failure one study examined indices of diastolic dysfunction to determine if they were correlated with measures of exercise intolerance (Skaluba and Litwin 2004)

The authors noted how inconsistently measures of mitral valve flow (E/A) or pulmonary vein flow (atrial flow reversal) have correlated in past studies with left ventricular filling pressure - the gold standard for diastolic dysfunction. Remember that diastolic dysfunction is synonymous with stiffness of the left ventricle. If it is unable to relax enough to allow filling the heart will use enormous pressure to fill it up - thus left ventricular filling pressure is indicative of diastolic dysfunction. The results are even poorer when individuals with intact systolic functioning (i.e. those with putative diastolic dysfunction such as CFS patients) are included. This suggests that E/A and atrial flow reversal tests are relatively poor indicators of diastolic function.

The problem with the E measure is its sensitivity to both changes in preload and afterload means it may reflect changes in those conditions rather than in reduced left ventricular relaxation or increased stiffness. Preload is the amount of tension in the ventricular wall just prior to when it contracts and propels blood into the aorta. Simply put it is a function of anything (blood volume, pressure) that effects filling (high BV, BP = high preload, . Afterload is the force in the arteries the heart must push against in order to expel its blood. Afterload is effected by peripheral arterial resistance, (high vasoconstriction = high afterload), viscosity of the blood (high viscosity=high afterload), etc. Thus conditions which cause increased preload, such as high blood pressure or reduced preload such as low blood volume (which many CFS patients have) may skew the results of these tests.

This study found that traditional indices of mitral valve inflows such as the E/A ratio, E-deceleration time and isovolumetric relaxation time were not significantly correlated with exercise capacity (Skaluba and Litwin 2004). (Isovolumetric relaxation time was almost (p<.069) significantly correlated with exercise capacity). That left ventricular mass correlated well with exercise capacity suggested left ventricular hypertrophy is a good indicator of serious diastolic dysfunction.

The measure which was best correlated with exercise capacity, however, was called E/Ea. E/Ea is the velocity of blood flows past the mitral valve divided by the early diastolic velocity of the mitral valve annulus. As Ea is less affected by preload than E/A it appears to be a more effective measure of left ventricular relaxation rates. E/Ea has been shown to be well correlated with both left ventricular diastolic pressure and with pulmonary capillary wedge pressure (PCWP). PCWP is the pressure found in the pulmonary arteries during diastole. As pressure builds up in the left ventricule it begins to cut off the circulation to the lungs, causing difficulty in breathing. It is increased LVEDP not reduced diastolic relaxation which produces the symptoms of heart failure.

FULL TEXT OF CITED ARTICLE

Edited by firewatcher
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Okay, this article explains why I really didn't care when I saw "diastolic dysfunction" on my paper. I understand what Firewatcher is saying. And, at some level I probably knew that--our body works differently than the average cardiac patient. I see we still keep coming back to that low blood volume thing. ;)

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THANK YOU everyone for your reassurances and research- I need it :)

I am NOT going back to the vascular surgeon. He made it clear that he didn't want to see me again. He says that all of my issues result from my connective tissue disorder and he isn't smart enough to help me- frustrating as he said it with a smirk. He investigated vasospasms (yes) and emboli (maybe.) When I asked if my blood could be hypercoaguable or hyperviscose he said "Maybe, but why spend thousands of $$$ on tests just to have them all come back normal?" I almost pointed out that i wasn't on "managed care," that I have great health insurance, and it was MY decision how I wanted to spend my $; BUT I bit my tongue. He wants the rheumatologist to manage & further investigate this. He DID say that I still need to go to a major teaching hospital and investigate everything more closely. I tried to do that last year at Emory in Atlanta & came away with nothing :(

I DO have an appt. to see my cardiologist on 1/4 (before the rheumatologist appt.) to further investigate the DD & have it explained to me.

I know I have done all that I can to remain healthy, but it doesn't seem to be working.... Very scary & frustrating- especially as these CC blockers have me feeling like crap. Sue, we seem to have some of the same stuff going on. I saw you had a topic on BB's.

Thanks again. I'm trying really hard not to have a major freak-out. It's hard right now :blink:

Julie

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Julie, yes, the bb are not making me feel very good. I have also given up caffeine a little over a week ago. It seemed to do fine--I didn't even have a headache from no caffeine. Right now I just feel a good dose of caffeine would do me good, in the way of a little vasoconstriction to get my brain back in gear!

I am going to a large, teaching hospital/medical school, and hoping they are going to work through all this.

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Julie, yes, the bb are not making me feel very good. I have also given up caffeine a little over a week ago. It seemed to do fine--I didn't even have a headache from no caffeine. Right now I just feel a good dose of caffeine would do me good, in the way of a little vasoconstriction to get my brain back in gear!

I am going to a large, teaching hospital/medical school, and hoping they are going to work through all this.

(((((SUE)))))

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Julie -

I really don't know what to say, I just want you to know that I have been praying for you all afternoon, for peace and wisdom. If it helps at all, my husband has atrial fibrillation (for three years now). We do not know what is causing his, but I saw in some research that it can be a result of diastolic dysfunction. Even though he has a bad case, he is well managed and has very few spells that come up during the year. He has been able to work with no change in his duties. Don't let fear and the mullygrubs take you down.

Many blessings to you,

Robin

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hello dear julie,

i am very sorry that you are dealing with all of this...

like you-- i was overwhelmed--shocked when i came to understand that DD is essentially heart failure

for what it is worth... here is my experience with DD

last year cleveland diagnosed me with DD; cleveland prescribed cardiac rehabilitation, beta blocker and a reduction in my salt intake

note: i completed 20 sessions of cardiac rehab and but did not opt for the beta blocker

last winter: i had another stress echo in boston (MGH) and a subsequent stationary EKG

was told that based upon new results i did NOT have DD. a third cardio was brought in to confirm.

i was relieved... my EF was higher... who knows why or how...

no one offered any real explanation---but in an aside one cardio implied that DD is difficult to diagnose

presently, i do notice that my diastolic pressure is OFTEN higher now (systolic low/normal)

and my pulse pressure is consistently narrowed--particularly while i am excited, nervous or simply feeling unwell.

i will continue to monitor and log BP's.... the DD diagnosis galvanized me and i am hyper vigilant now.

julie, you are in my meditations. sending well wishes and healing thoughts your way

cordelia

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Julie,

I just saw this thread. Man, you've been through the works lately! I can understand a bit... last year I was hospitalized for elevated troponin and chest pain. We still don't really know why my blood vessels clamp down sometimes, but the carvedilol has helped me the most. Try not to stress over the test results. I agree with all the rest that our tests are never quite normal, and they're only understandable when the interpreter understands the underlying condition. I hope your cardio doc or rheumy can figure this out so you don't get any more black fingers or toes!!! I'm so sorry you're having to deal with this.

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Oh Cordelia-

I was hoping to hear from you. After doing a search of DD on this forum- I read about your saga and I wondered how you were now. So wonderful to hear you've gotten past your DD. I have NEVER heard of anyone improving until I saw your post. Gives me HOPE.

I'm glad that rehab helped. Can't imagine it would make a difference for me as I'm already so active... Were you quite active when you were DXed? If so, HOW does rehab help? Just as an aside, I've had months & years where I was unable to exercise because of severe symptoms. My current MCAD protocol has had me doing so well that I have been able to run for the first time in my life... Funny that that's when my echo shows heart failure :blink:

I just figured out last night that i was actually having an ALLERGIC REACTION to the CC blocker I was taking. I had been taking it for one week at the time of that echo- that HAS to have affected my results. My heart goes bonkers when I'm in what I call my "low grade anaphylactic" mode. My EF was low, etc. I hope that all will be improved when the echo is repeated on 1/4 as I have stopped taking the offending med.

I plan to do the SAME thing you have done- no beta or CC blockers. They either drop my BP so low I faint or put me in anaphylaxis. They are simply not an option for me. WHY did you decide not to take them?

Thank you for sharing and your kind thoughts. It all means so much.

Keep feeling well!

Julie

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Thank you (and everyone!) for your kind words. Every time I get to a "good" place with all of this something new comes up :rolleyes: Your kind words mean so much.

Julie

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Hi Julie,

I have just read your post, with reference to the blood viscosity have you ever read about Hugh's syndrome?!

"The symptoms are so wide-ranging, most of us probably suffer from one of them: migraines and headaches, memory loss, poor circulation, blotchy skin, tinnitus and earache, tummy cramps, DVTs, recurrent miscarriage, infertility, giddiness, visual disturbance, leg ulcers, seizures, and even mini-strokes (a transient ischemic attack or TIA) or a diagnosis of MS.

But if you've been reading that list and have ticked off more than a couple, it is highly likely you could be suffering from a syndrome that's not only extremely common ? affecting about one million people in the UK ? but which is under-reported, misunderstood and dangerous to ignore, despite being simple and cheap to screen for and treat. Now, thanks to a new book that outlines 50 different case histories, anyone who may have this condition, known as Hughes Syndrome, can learn if they are at risk, and go armed to their GP to demand the blood tests that will put their minds at rest."

This was taken from an article in a UK news paper.

http://www.telegraph.co.uk/health/4400796/Hughes-Syndrome-simple-to-treat-but-all-too-often-ignored.html

I am sorry to see you have had some worrying results come through, my thought on the DD issue is to question if the results are pointing to DD or are they just reaffirming how mucked up our bodies are! I have been on CC blockers for many years now and do not have too many problems with them but when I have been without them for a week or so my Angina type symptoms and migraine return with vengeance, this has lead me to believe that vasospasms may have something to do with my symptoms, I am still working on why all the vaso spasm's though!!!

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hello julie--

i am having a bout--so forgive any lapses in syntax etc... will try to answer your questions...

beta blockers: my HR often plummets-- thought that the BB were counter intuitive so opted not to take them

cardiac rehab: my original prescription from cleveland (summer 2009) reads:

cardiac rehab II under supervision for cardiovascular/circulatory re-adaptation

preceded by EKG stress test

i was out of shape, over weight, exercise intolerant. cardiac rehab helped with all of this

before dysautonomia-- i did the elliptical machine, yoga, pilates etc... i had great stamina...

since you are already in good shape--perhaps there is a different sort of protocol that can benefit your heart

i am going to investigate yogic breathing techniques again. i notice that my diastolic pressure is lowered dramatically when i practice

controlled breathing. guided imagery and mind/body CD's have also proved to have a real impact. unfortunately, i am often lazy

obstinate and filled with self pity... so i have not been consistent with the yogic breathing/imagery and mind/body exercises...

2011 is on the horizon... hoping that i find inspiration and motivation in the new year. it encourages me to know that you are running!

KUDOS!!!

presently i am often breathless i do not attribute this to DD (i also have allergies and reactive airways) but who truly knows --so much of this overlaps

a boston based cardio was emphatic when she stated that diagnosing early stage DD is difficult. more importantly to me

she carefully explained that diastolic dysfunction is NOT the same as diastolic failure.

julie, was there a mention of a stage/classification in your assessment? mine was termed stage I.

with all my best,

cordelia

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Oy Vey again :blink:

I saw the rheumatologist today- appt. moved up. I don't know whether to start with the bad news or the bad news... OK, the worst first, I hope the rheumy misspoke when she said "You have CAPS- Catastrophic Antiphospholopid Syndrome." Thankfully a perusal of the research makes Familial Antiphospholipid Syndrome (not the catastrophic version!) more and even quite likely- could explain one brother's aortic aneurysm and another's carotid dissection, a nephew's kidney issues, and my reoccurent black fingers. A few here suspected this- also known as Hughes syndrome- you could be right. She took 19 vials of blood to be sure :rolleyes:http://en.wikipedia.org/wiki/Antiphospholipid_syndrome

She also ordered a CT scan to check for tumors as my lymph nodes are quite swollen (who knew?) That, combined with the leukopenia, nightsweats, and itching....

Then, as I was still standing (the threat of early death by blood clot or cancer hadn't felled me yet :ph34r:) , she informed me that I have scoliosis. My left leg is an inch longer than my left and my pelvis is quite tilted. Not to worry, all a part of my anklosing spondylitus :blink: Huh? http://en.wikipedia.org/wiki/Ankylosing_spondylitis

Additionally, she ordered a full cardiac work-up. I already figured that one out based on my weird echo and have that set-up as well. Tests and more tests..... I get the big news/results from the rheumy on 1/26

She ran a test where I had to walk slowly for 6 mins. She tested my HR and oxygen level before & after. Before, my oxygen was 97% Afterwards, it was 82% I didn't feel fatigued or winded or even slightly short of breath. (Heck-before all of these dire DXes- I was running 15-20 miles a week.) What's that about? Is that just a dysautonomia thing? No wonder my red blood count gets so high- I must be chronically oxygen starved.

Scary stuff and think, I used to be the perky cheerleader here :(

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Wow Julie! That's quite a list you have there! Sometimes maybe it IS better not knowing what all is going on. Actually I'm sure it's better to know, but still... that's a lot to think about!

Did you have a positive HLA-B27? Was that how she gave you the Ankylosing Spondylitis diagnosis?

It is interesting how your symptoms are seeming to fall in line, now that you have what may be an actual accurate diagnosis.

You're definitely in my thoughts and prayers. Oy Vey is right!!!

Sending you hugs!

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Wow Julie! That's quite a list you have there! Sometimes maybe it IS better not knowing what all is going on. Actually I'm sure it's better to know, but still... that's a lot to think about!

Did you have a positive HLA-B27? Was that how she gave you the Ankylosing Spondylitis diagnosis?

It is interesting how your symptoms are seeming to fall in line, now that you have what may be an actual accurate diagnosis.

You're definitely in my thoughts and prayers. Oy Vey is right!!!

Sending you hugs!

I know. I'm shellshocked. I just lied on the sofa after the appointment. & barely moved the rest of the day. My son & cat didn't know what to make of me :P My big hulking son put a blanket on me :) & my cat chose NOT to use his litter box- preferring the dining room drapes :angry:

Re. the Ankylosing Spondylitis, I don't have any blood results back yet. But I'm sure she checked for that. She seemed to think I had AS based on the the irregularities she found in my spine, hips, and legs after taking measurements, and the pain that I experienced when she prodded in certain places. I have had multiple problems with my hips (upper gluteus) and have had to get steroid injections, BUT I have always attributed that to running (so has my PT.) She's planning on doing X-rays at my next visit, but I recently had some done at the orthopedic- hope those will suffice. To be honest, the AS is the least of my my worries. If I have that, it's mild and I'm hopeful that if I stay active I can keep it from progressing. I guess there is a connection between AS & aortic problems which run in my family.

You're right, if the APS is accurate, it explains a lot- many early hospitalizations with high liver enzymes and GI pain, miscarriages, etc. Just a waiting game now...

What a way to start the new year- time to dust myself off and move forward. If I get answers, this will be worth it. Knowledge gives us all the power to make better health decisions.

Hugs back to you & all. Thanks for caring.

Julie

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Julie,

I'm reading about everything you are going through and I just want you to know you arenin my thoughts.

You are such an inspiration to the rest of us and have lifted many here up when we feel overwhelmed and scared.

I hope through some source you are provided that same gift.

We love you!

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Have you ever been tested for anti-phospholipid antibodies? If you have one auto-immune disorder, you're at higher risk for others. Anti-phospholipid antibodies can cause clotting. I'm supposed to take a daily aspirin. I don't because I take so many other pills, but I get lectured at every doc appt by ever doc I see, so I know I should....

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PS would you mind explaining what problems you've been experiencing with exercising? I, too, have been working out 3+x/week for about 4 years, and am in really good shape, but recently I've been having problems after exercising (new cardio says it's related to dysautonomia and I need more salt). Now I'm scared to exercise; it's like my body is not "winding down" correctly after exercising-my heart starts racing, or isn't slowing down, and I go into a panic attack/seizure/whatever (if I don't salt-load).

Your thread is interesting because I hadn't realized others had concerns re left ventricle failure. Some reading I've done has pointed to maybe some problem there. What kind of tests did you have to diagnose that? I'm waiting for my results from the heart monitor (I asked for a copy of the report AND the raw data-we'll see if I get both....).

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Hi FB-

Antiphospholipid Syndrome (APS) seems likely- somehow you missed that in this convoluted thread :rolleyes: . I'll know by late Jan. I've done lots of research & it seems to explain a lot of stuff. The literature says it is NOT familial, BUT the NIH has identified 7 families with 30 affected family members- which means there are oodles of us. I have many family members that have had weird vascular stuff- aneurysms, dissections, renal stenosis, etc....

I've also been reading how this is connected to CFS and dysautonomia. Makes sense sticky blood doesn't flow or oxygenate well. APS patients are notorious for cognitive dysfunction due to lack of blood flow.

Am I to understand that you have APS?

Julie

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