familypast

I had an MRI back in April, which uncovered a few small lesions. Here are some excerpts: "Foci of signal hyperintenity in the left optic radiations, right calcar avis. Bilateral posterior periventricular hyperintensity. Findings are worrysome for demyelinating process, which may correlate with the provided history of facial numbness". Conclusion: "Multiple supratentorial hyperintense foci which are worrysome for demyelinating process" I'm not sure if / how this relates to the autonomic issues...still trying to figure it out!

Hi KC, Do you think he was speaking literally (i.e. in a western medicine sense)? I occasionally have acupuncture done by an MD, who also references "kidney", "liver" and other organs. But these are based on concepts of energy flow from ancient Chinese medicine. Whether or not the explanations behind these flows are valid, I do believe there is something to it. I don't think that Western medicine has all the answers. Now, about those parasites. That has me a little baffled. And your "what the buck rogers" comment cracked me up! Perhaps the parasitic reference is also figurative? If you think about it, virus' are parasitic -- and autonomic disorders can often be traced to viral illnesses. I'm not sure. Regardless of the "why's", how does he propose treating it? Debbie

I had my genome scanned by 23andme and have been scanning the data for "clues" about autonomic disorders. Has anyone else had this done? If so, I'm looking for other members to share data. My username at 23andMe is the same as it is here: familypast. Debbie

I would like to have one. I had a urine "free cortisol" test, but that is only useful for diagnosing Cushing's syndrome.

I'm 47 and newly diagnosed. However, I've had the problem since at least my 20's, or perhaps my teens. Debbie

I've wondered about that - or something along those lines. With tachycardia, your heart is beating very fast, but is not doing so efficiently i.e. too little blood pumped with each beat. IF we assume that a slower (normal) heart beat is more efficient, then we should feel better. But what if that slower heart beat is NOT pumping proportionally greater volumes of blood? Then we're no better off -- and perhaps worse off, depending on cardiac output.

I did a 24 hour monitor about 15 years ago and was diagnosed with sinus tachycardia. According to the cardiologist, my pulse would go to 160 without provocation. Now that I know about POTS, I'm wondering if there was indeed a provocation: STANDING! Incidentally, I mentioned the sinus tach dx in my medical history when I saw a rheumatologist at the Cleveland Clinic last summer. The doctor then asked me if the tach episodes occur when I stand. I said yes, so she referred me for a tilt table test. So, yes I would have the test (if insurance permits). Even 15 years later, I have the 24 hour monitor to thank for my diagnosis. Debbie P.S. I'm a statistician by profession, so MORE data is/are always better than less data!

As I mentioned in an earlier post, I went to Cleveland Clinic last week for more autonomic testing. I had the blood volume and hemodynamic tests for ~2 hours, followed by the heart rate variability tests. Well, halfway into the blood volume and hemodynamics test, my restless legs "kicked" in. And I mean, the kicked in bad. I was fine for the first 45 minutes or so, but then it started to hit me. Unfortunately, this happened right at the beginning of the hemodynamics scan -- at a time in which I was told to lay still. I couldn't do it! No matter how important it was for me to keep still, my legs wouldn't let me. I was absolutely MISERABLE. For me, RLS is nothing like the "creepy, crawly" sensation I hear on commercials. It's feels like it's in the deep muscles or tendons. It's an achy, pulling tensing feeling that makes me crazy! I have two questions: 1. Did I completely screw up my test results? (I asked the nurse, but she kept telling me "it is, what it is") 2. How many others here suffer from RLS? By the way, I take requip for RLS, but only at night. I usually don't have problems during the day (ahem, except that day), but I've found that Adderall helps with daytime symptoms.

According to the results of a TTT I had at the Cleveland Clinic, I have both orthostatic hypotension and tachycardia. I had follow up tests last week, so hope to know more about the specific cause when I get the results. In the meantime, I have been keeping a log of my BP, pulse and temperature, along with comments about how I feel. Actually, I started doing this about a year ago, after noticing fluctuations in my blood pressure (at that time, I was seeing high spikes in my BP, which is unusual for me). I resumed tracking about two months before my tilt test and have been doing tracking it since then. (Since the tilt, I started checking my BP laying down, sitting up and standing). To make a long story short, I have noticed different patterns in my vitals and how I feel. 1. Orthostatic symptoms upon standing: Drop in blood pressure and increase in heart rate, resulting in lightheaded feeling, racing heart, etc. Sometimes worse than others. 2. Feeling "relatively" fine i.e. feeling functional. Very mild symptoms (It figures, I had mild symptoms on both days of testing. Fortunately, it still showed up on the TTT, but as "delayed and accentuated") 3. Normal vitals (and orthostatic response), but feel crappy. Based on my data, "crappy" is a combination of several symptoms: a. unrelenting fatigue, "flushed feeling" in my face (face feels warm, but isn't red), palpitations (even though my pulse is LOWER than my tachy episodes). I often have a mild, headachy feeling in my eyes - at least, I feel like I'm going to have a headache, even if I don't have one By the way, these were also the symptoms I had last year, when my BP was spiking. I was put on Benicar last April, which has stopped the spikes, but I still have these weird spells. Oh, and the spells usually happen for several days or weeks in a row. Debbie P.S. I almost forgot. I did notice that my body temperature is LOWER on these days. My cheeks feel warm (flushed), but I have a low temperature. When I checked a few hours ago, it was 96.7.

How is your reach? Are you "missing" things that you reach for or try to touch? I noticed several months ago that I started "undershooting" door knobs and other things that we can normally do without thinking. For example, if I mindlessly reach up to scratch an itch on my face, I end up missing it by a centimeter or so, then have to readjust. The technical name for this is dysmetria. This is what a neurologist is looking for when they do the "finger to nose" test. Debbie P.S. I'm writing this in "edit" mode. I meant to post this under Niki's original post. I guess I even missed that!!!

I am still in the diagnostic phase and seeing Dr. Fetnat Foaud at Cleveland Clinic. I had a tilt table test with her in September and additional autonomic tests earlier this week. She is well known researcher in this area and has pioneered some of the techniques used in the diagnosis. She's also very thorough. On a personal note, there's something very warm and caring about her (but in a low key way). From what I've read here on the forum, she is more focused on diagnosis than follow up care. That's more than ok by me! Getting the right diagnosis is half (three fourths) of the battle.

YES. I've wondered this myself! There's a lot of heart failure in my mother's line. My mother doesn't have cardiomyopathy, but has coronary heart disease and 50% renal failure (she's 67). I created a genogram using information I gathered from other family members and from death certificates. Here's my direct maternal line, starting with my grandmother: Grandmother: congestive heart failure Great-grandfather: "muscular heart disease" 2nd great grandmother: "cardiac asthma" My grandmother had 12 siblings - two died as babies and a brother died in a car accident. Of the remaining 9 siblings: one brother had "cardiac decompensation", another "pulmonary insufficiency" (i.e. pulmonary valve of heart); a sister with Atrial Fibrillation, another sister with Ventricular Fibrillation. A third sister died of cancer, but also had MVP. I'm convinced there's something to this. Sorry so morbid on my first post! Debbie