toddm1960

I did a google search on her and thought I could find out more behind the scene info on her. But there was nothing, no interviews or stories behind her writing this. Oh well doesn't matter, it's still a great way for us to help others understand what we're going through. I'm buying a round of spoons for the house.......

This is a great story for sure, I still use the same line......sorry no spoons left, and my family knows what I'm saying. Does anyone know when she wrote this? I've found other forums talking about it dating back to Jan 2007, but I couldn't where she talks about when it was writen. But it is timeless......

I had an office job and couldn't keep my upper body stright up for 8 hours, and I'd get worn out holding my arms and hands up to type. Keep pushing for answers, limited muscle proformance like we have isn't right, and deserves more testing than just an EMG (my EMG's were all normal also) If doctors won't answer your letters, call their office. Don't let them blow off your symptoms.

I get this all the time, its a part of my life. But green Hawaiian Punch is my fav.....

CHRISTYD I didn't want you to think my rant was directed at you at all, it was all towards doctors that just dump us off when their only tests come back ok. Good luck at Mayo I'm sure you'll better testing there........

This has always been an issue with my son. If he doesn't take Miralax daily, sometimes he doesn't have a BM for 2 weeks. Miralax is a must, and even when taking it daily his BM is every 3 to 4 days. He literally clogs the toilet everytime he goes.

His first gastric emptying test came back positive in November 09, but they retested him in March and it was fine. Constipation has been an issue with him since he was 3 years old. The doctors aren't that concerned, we just keep giving him 2 capfuls of Miralax a day.

Christy

You should ask the doctor if we could plug him up for two weeks, tell him it's nothing to be concerned about. It's so sad how the medical community treats things they know nothing about. My second Gi doc told me the same thing, "your gastric emptying test is only on the slow side, nothing to worry about" Fire these do nothing docs, keep looking until you find someone that can help.

Sorry for the rant but until I took control of my medical care nothing got done. The minute I got "I don't know" or "nothing to worry about" or "it's all in your head" I fired them right in the exam room and moved on. I took 5 years but I did end up finding doctors that helped.

Well that's not all bad news, slow wave or delta wave sleep is non REM and is where your body repairs and regenerates itself. Delta wave and REM sleep are the most important for us, looks like you're getting enough delta wave sleep and only decreased REM amounts. So I guess it means you passed by the skin of your teeth......LOL. What drugs are they going to have you try to get you into those deep sleep stages sooner?

Sorry to hear you're having such problems, but I think more of us with dysautonomia have slow transit times (IBS-C) rather than the standard IBS most GI's know about. It took me two years to find a good GI doctor that ran transit time tests, this test tracks the amount of time food takes from the time you swallow it untill it comes out the other end. It will show any strictures or malforamtions of small intestin and colon, and any rotation problems with your stomach. The gastric emptying test only checks for such a small part of our GI tract problems. You need to find a GI doc that runs transit time tests and esophageal and gastric monomitry. Remember your autonomic nervous system controls all the smooth muscles of our GI tract, so it's only natural those of us with dysautonomia have major GI problems. The sad part is 90% of GI doctors only know about basic testing and they pass us off when these tests or normal.

What I've found helps me best is 1,000mg of magnesium with 12oz of pruine juice each morning, keep trying different things, we're all so different what works for one won't work for others. Good luck and I hope you find some ideas that help.

How do you feel when you don't workout? Or how is the rest of your day? Do you pass out when you walk to your kitchen or bathroom?

Yeah it's the heat for me also, I could never live in the south east with everyday like this. I've been in reclinerville for a week

Much of thr research out there has been on these rare genetic defects that manifest themselves from birth to early childhood. These are the known variants you read about and most of these are fatal. The types of mitochondrial dysfunction you're going to find in people with dysautonomia are breakdowns in the oxidative phosphoryation process. This type of testing is new and part of the reason many doctors are failing to connect mitochondrial disease to dysautonomia, all they know about mito are the deadly variants seen in infants......if they know that.

What I can tell you in my case is I was told I couldn't have POTS becvause I didn't pass out, then after I failed my TTT I was told I couldn't have mitochondrial disease because it wasn't connected to dysautonomia and was very, very rare and not worth looking into. This isn't to say everyone is going to follow my diagnosis path, but don't let doctors lack of knowledge stop you from finding answers for yourself.

If you only do frozen tissue testing of the muscle tissue many are inconclusive because this only tests for known variants, genetic blood testing can also test for these. What you need to have is fresh tissue testing, currently this is only done in three locations, Atlanta, San Diego and Cleveland. This type of testing will detect breakdowns in the 4 complexes in the oxidative phosphoryation process. Currently in research stages are DNA swab testing, but at the present time only are dectecting complex 1 and 4 breakdowns. UMDF.org, mitoaction.org and MDA.org are good sources of information.

Not sure why, but I get all 4 of these crazy things going on also. Don't feel alone

My numbers aren't great, I've been working on them for awhile now.

Total chol 228

HDL 33

Trig 336

I'm taking 1,500mg of niacin per day since I can't take statins.

I can't believe Vandy is lumping together OI, NCS and POTS as interchangable. NCS and POTS are two very different things, both are types of orthostatic intolerance but that last sentance: Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used." That's just wrong, BP should never be talked about when diagnosing POTS. No wonder we have an uphill battle with doctors not knowing what's going on.

Tell me again why you're partial that area......

Mestinon works on acetylcholine and helps people with parasympathetic withdrawal. For some people its their sympathic nervous system in overdrive, for others it's their parasympathic nervous system not engaging. I don't think mestinon will affect mito problems either way. I'm not sure where you're close to but the University of Tennessee Medical Center wouldn't take your insurance? I could understand if a mito specialist wouldn't, but a university medical center.....I never would have guessed. As far as mito cocktails go, they are different for everyone and it depends on what is found in your blood work, spinal tap and muscle biopsy. The main item for me is CoQ-10 (Tishcon's Q-Gel)

BellaMia,

I'm glad you liked your doctor, that's half the battle. But their office should have sent you the family medical history (your genetic medical tree) paperwork to be filled out at home and bring it back in. That's tough to do right in the office, I know I took a week, made calls to other family members to get it all right. One quick note though, mitochondrial diseases are not stricky passed on from your maternal side. When it is maternal, its a defect in your mtDNA (mitochondrial DNA), more of these are the known variants. What they're finding more and more is defects in nDAN (nuclear DNA) that interact with mtDNA and cause a mitochondrial breakdown. So you can inherit this from either your mother or father, so when you fill out your genetic health history look at both sides just as carfully. Good luck I hope they can give you some answers.

Have you had an esophageal monomitry? Could be esophageal spasms, I get those feeling often, also the feeling like food is moving back up to my throat.......when I haven't eaten in hours. I even get these spasms in my stomach. Just one more thing to check out, I hope you find some answers.

I wish I could tell you they gave me X and it worked, but I've tried a few different meds, Ambien, Lunesta, Rozerem, Amitriptyline, Nortriptyline, Gabapentin........none have changed the sleep disorder. Also bunches of over the counter meds and vitamins. Many of these drugs not only didn't help, they made me feel worse. Wish I had some answers for you, but I'm right there with ya on this crappy sleep thang........

I get numb lips, tongue and teeth all the time.

I had mine done at sleep clinic, it was a great place, sound proof rooms nice beds. All the wires are a bit of a pain, but I'm so exhausted by the end of the day when I lay down I pass out. What they found was that I have alpha/delta sleep disruption, also called alpha wave intrusion. 16 times an hour I get knocked out of delta wave sleep back into alpha wave sleep and don't get enough REM or restoritive sleep. If you're thinking about a sleep study shop around, I've of places where beds are just a screen apart and some with apnea can snore the curtins off the windows making it hard for everyone else to sleep. Good luck and I hope you get some answers.

I feel like if I go when nothing's worse then people think I'm an idiot. Seriously. My ex-cardiologist's nurse was like "I don't understand why you still want to see him if you're fine" when it was time to schedule my appointment with him.

Maybe it's one of those normal problems everyone has and I just don't know that because of my weirdo health problems.

Some doctors are clueless about dysautonomia, how much do you think this nurse knows about it. Don't let a doctors staff control your health care.

Yes, my official diagnosis after all the testing at Vanderbilt is idiopathic Autonomic Neuropathy. When I was diagnosed with idiopathetic gastroparesis about 7 years ago, I volunteered to undergo a biopsy of my stomach lining for a research study my GI was doing concerning causes of GP. My results: idiopathic gastroparesis. So I guess you can call me Ms. Idiopathic Everything!

I'm no doctor.......but. I'd say autonomic neuropathy can most definitely cause gastropariesis, your autonomic nervous system controls the smooth muscles of your digestive tract. That neuropathy can cause your stomach muscle not to grind and work properly. I think too many times when a doctors doesn't know alot about what's going on, it's either idiopathic, or the patient is making it up. Sorry just my two cents.

I'm looking at getting Marinol also, I'm going at it from a vasodilator, NO increaser. Then on a lesser side for pain reduction for joints, back and rib cage. Currently I'm taking 1,500mg of niacin and 5mg of Cialis each morning, I'm trying to keep my BP from climbing while I stand. Why are you looking to use it? I'm not sure if my insurance will cover it or not, I'm still fighting with them to cover my CoQ-10 which is $200 a month. Wish I had some answers for you, maybe someone else on the forum has had some luck with this.