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12339832 tn?1424825004

dysautonomia getting worse....

my dysautonomia has been getting worse over the last year... should i be enquiring about a degenerative failure of my autonomic system?
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Avatar universal
Yes.thank-you.I gleaned more info from my daughter.Sadly it was not a gene that was discovered,but something very important.The research involved findind mitrochondrial damage in a human in conjunction with choline deficiency.In the past,I believe it was only produced in laboratory animals.So when a leading researcher found a person with a documented choline defenciency with cellular choline transporter malfunction she was able to examine mitrochondrial dna to test the previous theories.This was very significant.there were those at NIH arguing against the theory despite repilcation in animals.Choline is grouped in B vitamins.There are no us standards for how mut contain choline you need in the diet despite being essential for life.The Linus Pauling Institute had good info.My daughter took astrong interest in the bio-chemical side of this illness,which is why I think her mentor at NIH took an interest in her.They bounced their theories off one another,then comspiered to get the test they wanted done from whoever at NIH or outside was researching some aspect that was compatible with their theories.Her vitamins along with the amino acid panels were how they discovered her malfunction,that led to the mitrochondrial testing.All of these tests are not always presented to the patient as an option.It involves insurance,the drug company agendas,what research the researcher was given the grant for.Sometimes doctors cooperate,sometimes they don't,sometimes they impede.We couldn't get NIH to do an intestinal biopsy.despite recommending a colonoscopy,the obivious time to do it.How can you know if that organ is involved if they won't do the test.Her own Dr. was against the mitrochondrial testing and it was her mentor that got it put thru.That Dr. had a case of I"m the doctor,your the patient,you can't know anything.When she was proven wrong we didn't get an apology.My daughter also knew when to take intravenous fluids,yet a Dr at an emergency room turned her away.Lucky for her that nite her friend wouldn't take no for an answer got her to another hospital where they promptly admitted her.They told her later if she had not come in she would have died shortly her electrolytes were so low.That's why she is so proactive in her own treatment and why I want to share with your site the things we found that helped.Best Wishes.
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612876 tn?1355514495
I'm certainly not unaware of mitochondrial disease; I have mito myself. I just can't ethically recommend testing for something so rare based solely on people having dysautonomia, as it is not currently within the US's approved standard of care (testing, treatment) for autonomic disorders. But believe me, as I said I myself have mito and so do several of my friends, I do understand the gravity of mitochondrial disorders and also how underdiagnosed rare diseases can be. One of my rare conditions took *over two decades* to get the correct diagnosis, and it surely wasn't for lack of trying.

Of course, anyone who does not feel that their health is improving with the treatment for dysautonomia, who also has indications that mito should be considered, should inquire about mito testing. That being said, the US standard of care is that mito is to be considered when there is involvement of three or more organ systems. For anyone interested in learning more about mitochondrial diseases and testing for those, feel free to ask questions here or take a look at

http://www.mitoaction.org/mito-faq

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Avatar universal
Well I'll agree to disagree.Since very little mitochondrial testing is done we really don't know how many autonomic patients have this form.The amino acid panel would Be a clue as to whether or not the patient did suffer from mitronchondrial form of the diesease.My daughter got her mitochondrial testing at NIH.I don't who else have these test,but I will say the first three cardiologist never mentioned this testing and wanted to do Abletion,pace maker and beta-blockers with no real testing.Persons with these disease deserve to know if they have mitrochondrial form of the disease ,even if its a minority of patients.My daughter has done much better with treating the underlying amino-acid and vitamins defiency that cause the symptoms in the first place.My comments are not to discourage anybodies treatment,just to let them know there is ground breaking research and treatment that will help some,that has not been wildly disseminated among the medical community.I know this testing is rarely done..This will only be done if the patient or parent advocates for it.If everybody is satisfied with just the standard medication,they think they feel as good as they could,then by no means seek this testing.But What I am hearing is a lot  persons on this site who are taking the conventional treatment and they still feel bad.As I am not telling anybody not to listen to theyre dr. or stop medication.If you stop beta-blockers suddenly it can bring on a heart attack.I am sure you are a lovely person doing good work and providing a service of information.Don't be afraid of another approach which could augment the treatment for some people.In a few years I hope there will be a gene testing for the gene they discovered in my daughters form of disautonomia.The hope one is a cure.
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612876 tn?1355514495
Cortizone is not a typical treatment for dysautonomia. Beta blockers are the number one treatment ("first-line" treatment) for one of the most common types of dysautonomia: POTS. I'm not sure where one would find information that "many people do not tolerate [beta blockers] well." In fact, beta blockers have a high efficacy rate, especially in the childhood/developmental form of POTS.

As I've said elsewhere, the amino acid panel is rarely done is a part of a dysautonomia workup, as this test is mainly part of the battery of testing for mitochondrial disease (which only a small minority of autonomic patients have). Please talk to your doctor if you have questions about what testing is right for you.
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Avatar universal
Sorry I told you N C university.That is not correct.I believe the gene connection paper was published in Canada.Also research was done by Vanderbilt University.My daughter is very sensitive about her condition and privacy and I have to respect that.I would contact NIH to find someone to do your amino acid panel workup or any major research hospital until you find the right testor.I agree with the above comments sometimes symptoms flare and abate and we really don't know why.But one thing I do know that dysautonomia persons are more likely to be adversely affected by other pathogens like virus and must take great care to get treatment early.In the old days before we knew anything about my daughters condition the main treatment we knew that helped was a trip to the ER and a bag of fluids.Then when we found out she loses those electrlytes too fast she can usually prevent that by taking smart water daily.So sometimes people find something that helps their symptoms which is ok.But it is essential to check for amino acid deficency.You can't treat what you don't know you have.So best of luck.keep us posted
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Avatar universal
Sorry are not well.My daughter has this ailment.after suffering many years is doing better.She is not cured,This is a lifelong issue for her.The beta blockers made her worse, and many people do not tolerate them well.The cortizone caused her to gain 60 lbs and left her more fatigued and depressed.My cousin helped her find a wonderful Dr. who got her into NIH.They treated her high homocysteine with b6.She let them poke and prod her for many years.As a result,North Carolina University discovered a gene, from her dna,that is resposible for a defective choline uptake,the first one discovered in humans.She has a choline deficiency and an crippled ability to absorb it,but she does take it now daily.They also discovered she pees out her electrolytes too quickly,so she drinks smart water daily.The amino acid panel for persons like you is very important to have.In my own panel(because iam her mother they took my blood too) I am Sam-e,phosphytytle serine,and choline deficient.For Sam-e I take the bcomplex and folic acid,I take the serine and choline.Get your amino panel done.It may be hard to find someone to test SAM-e,though lots of people take whether they need it or not.Sam-e helps joints and mood.Contact North Carolina University to find the best place where you are to get these blood tests.This is a real disease most likely genetic.get up slowly in the morning,get your electrolytes,take your b-complex vitamins,get the best grade bio available versions so they absorb.You can also try some support sock,they wor k best if you put them on in the morning before your blood pools,so you don't strain your heart.We found an endocrinologist to help my daughter lose the wt.She also has thyroid and hyperglcemic probably all related back to dysautonomia.As a young person I never felt well and was told many times it was all in my head.Thanks to my daughters courage and perseverance I now know I didn't imagine my problems,this is a real disease.They are varying degrees of disfunction,but with the right supplements you can slow the progression.They also gave my daughter anti virals to use to fight shingles and if she gets a bad virus,because the autoimmune is compromised in dysautonomia patients.The key is to prevent fluid and electolyte loss,which is already at risk.You most likely have choline deficent  if your liver enzyme are usually out of wack.Good luck.You can feel better
Helpful - 0
612876 tn?1355514495
I will warn you right off the bat, I don't have a simple answer for this. But I will tell you the process I went through personally when I had the same concern.

I was initially diagnosed with POTS; that was about a year after my symptoms onset in 2006. By 2009 I was very concerned that my autonomic issues were progressive. I raised this concern to my EP cardiologist, my neuromuscular specialist, and my PCP. There were several factors that helped us answer this concern:

1. I went to Cleveland Clinic to have more comprehensive autonomic testing done at their Syncope and Autonomic Clinic. I saw (see) Dr. Jaeger and Dr. Shields there, and have been very happy with them and their expertise in autonomic cardiology and autonomic neurology, respectively.
2. I was referred for cardiac rehab by the Cleveland Clinic. At the end of 3 months of cardiac rehab, the supervising cardiologist for the rehab program had an office visit with me, and informed me that he was 99% positive POTS was not a correct diagnosis for me. This came about as my results from cardiac rehab were very different from all the POTS patients they had treated.
3. I went back to Cleveland Clinic in 2012 to repeat the tests I'd had before, as well as having a TST (thermoregulatory stress test) that hadn't been available my first time there. The new results showed a worsening of my dependent limb blood pooling, as well as a steady level of chronic low blood volume (hypovolemia).
4. From this information, as well as a functional assessment by a physical therapist that I had incidentally from seeing her for an injury I had, my doctors were able to piece together enough to change my diagnosis from POTS to "Generalized Dysautonomia" ... a chronic, progressive form of autonomic dysfunction.

As you can see, it took several YEARS for even top experts to make that determination. One reason for this is that dysautonomia patients can sometimes have flare-ups that last months or even years, and then go back to their higher level of functioning. This is not the least bit uncommon in dysautonomia, and can sometimes be a function of additional mental or physical stress, but other times can simply hit for no apparent reason. Without a "big picture" of symptom trends over several years, it's nearly impossible to tell a self-limiting case of POTS from a generalized autonomic failure.

Have you had testing at Prof. Mathias' lab yet? (As I understand it, he's only seeing private pay patients now, but his lab is still there and staffed by experts in our field). That's one way that you can get some more concrete answers, especially if you repeat the tests a few years apart. Also, it can help to track your symptoms over time so that you can show that information to your doctors to help them understand the broad changes that occur over months and years.

We have a Dysautonomia Tracker here on MedHelp that you may find useful to record that information daily and print it to show your doctor. Let me know if you need help finding the tracker. It should be there under "Most Popular Trackers" in the bottom right corner of pages in this community.

Let me know if you have further questions,
Best, H.
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