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Need Your Help- Searching For A Statistic


For those with a Formal Dysautonomia Diagnosis  

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I'm searching for a statistic for the newsletter and would appreciate your help :P This poll is only for those of you with a formal dysautonomia diagnosis. By dysautonomia, I mean ANY autonomic dysfunction: POTS, NCS, NMH, VVS, etc.

Some here also have figured out the underlying cause for their dysautonomia, that is NOT the diagnosis I am referring to- just the dysautonomia. From the time symptoms presented themselves, and you actively sought answers, how long did it take to get diagnosed?

Thanks for your help!

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my case can't be answered in such a poll. In mid 80's started getting sick and missing work. Then had to get jobs working late hours in jobs. In 1986, told I had "Chronic Adult Mono" which was controlled with lots of sleep on weekends and crashing after work and maybe going out socially to hear music, ONE night a week.

Then this all progressed, into many variations in 1990. in 1991 I got Soc Sec for CFS (Chronic fatigue Syndrome) then I felt worse and had to change doctors 3 times to get a Autonomic dysfunction dx. I had a TTT in 1998 but months before that, my current doc "UNDERSTOOD" my gripe of "when I stand up I feel worse, when I lie down, I feel a little better".

My "CFS" specialist dissed that gripe and said the few pts he sent for TTT gave no answers...sigh. Don't get me wrong, he was kind and compassion for 8 yrs but NEVER investigated other things.

Thus I did not know how to answer the poll. 8 years after disability? Or 13 years when I started DRAGGING my rear end thru the work day and sleeping whenever I could?

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For many years I didn't have many symptoms, but in the 80s and 90s had sudden spells of tachycardia, and almost always panic attacks with being tachy. With this I had one bout of chronic fatigue for several months in 1990 but remained working. MVP was diagnosed in 1982. From 1982 to 1990 didn't have to take any medications. In 1990 the tachycardia came with a vengence, and I went on Inderal, but now take the generic propranolol. The propranolol contolled the tachycardia until Dec. 2000. My health crashed, and continued to crash. I found out in June 2001 I have POTS.

Actually I have been having symptoms for many years, but didn't seek consistant medical care until the crash in late 2000. So I guess you would say it took about 6 months from when symptoms got really bad--------but I had POTS for many years along with EDs I didn't know I had yet either. I used to have unexplained pain in my neck and feet for years, but it was never really investigated very far other then a simple x-ray. After looking through old records from the 90s, I found abnormal x-ray on me feet. One doctor told me that I had a compressed fracture in my neck through an open mouth x-ray.

I think a lot of us get used to pain, and other OI symptoms and have compensated for years, but we crash at some point, and were no longer able to "go it alone"------------------we start to look for relief and answers.

Maxine :0)

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My son saw 9 different doctors in less than 3 months and not one of them had a clue as to what was wrong with him. I found the diagnosis online, then got a referral to a specialist who gave him a TTT . We might still be looking for a diagnosis 2 years later if it wasn't for the Internet.

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Like the others, I've been symptomatic for most of my life. All my doctors dismissed it as something else: deconditioning, dehydration, new Mommy-syndrome, bored housewife syndrome...

From my biggest crash in August of 2007 it took 15 months for a "formal" dx of dysautonomia from Vanderbilt, since none of my doctors felt qualified to make that call.

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I feel guilty. I was diagnosed in about a month. My PCP referred me to a cardio within the first week. The cardio suspected OH right away, and it was another couple of weeks til the tilt test and got a diagnosis of POTS. Those weeks felt like an eternity...I can only imagine what others have gone through.

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I started going to doctors for the specific symptoms at age 19. Over the years I got diagnosed with symptoms (migraines, neuropathy, raynaud's, etc.) and was able to enter those into an Internet search engine. I found dysautonomia on the Internet and saw a specialist to get formally diagnosed at age 28. I saw 2 podiatrists, 3 rheumatologists, 2 vascular surgeons, 1 endocronologist, 1 ob/gyn, 2 neurologists, and then finally a 3rd neurologist that solved the puzzle.

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What an interesting thread. AND I was speaking with a friend about this this evening. It was such a horrible time. I got sick last Sept. but because they always took my hr sitting they thought it king of high...but alas..no help..altho I couldn't function. HR was 188 standing finally when someone got onto it!! I thought I was going crazy...TTT in March confirmed POTS. BUT now...do we have a fix please???? :P

I want to add tho that with Guillain Barre...even when I couldn't stand by myself or feel my feet...my PCP told me I was dehydrated. I insisted on going to the hospital...9 days later I was on life support..go figure ;)

Erika

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I was first sick at age 27 (not feeling well and fatigued) and got much worse at age 38 ( in the bed with nausea and dizziness, that did not get better for many years) and diagnosed age 43. Life as I knew it, ended April 11, 1987, in the middle of my exercise class. The room had been too hot for several days before I became very ill. So I count about 15 years.

Oh!! That brought back some tough memories. Love all of you, Mary

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I checked the less than 3 month box, but sometimes wonder if I had some of it before because I had always had a thirst issue and drank lots of water and had been diagnosed with fibromyalgia several years before, so I blamed the fatique on that. However, the extreme fatique and heart palpitations and tachycardia episodes started in June 2008 and I was diagnosed with pots by Sept. 2008 so I feel lucky in the sense I did not have to wait years to understand as many people do.

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i too had some of the symptoms since i was nine years old after a bout of gastroentiritis.

and throughout the years i had some symptoms worse than others although mostly bearable.

until just over two years ago may 07, when a blast of symptoms came over me dizziness, nausea, shoulder neck pain, headaches, when my life stopped.

it wasnt until this year may 09 that a doctor said it could be p.o.t.s. i finally had an autonomic function test.

so i ticked the two years box.

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I'm searching for a statistic for the newsletter and would appreciate your help :blink: This poll is only for those of you with a formal dysautonomia diagnosis. By dysautonomia, I mean ANY autonomic dysfunction: POTS, NCS, NMH, VVS, etc.

Some here also have figured out the underlying cause for their dysautonomia, that is NOT the diagnosis I am referring to- just the dysautonomia. From the time symptoms presented themselves, and you actively sought answers, how long did it take to get diagnosed?

Thanks for your help!

My daughter was 13 when the severe symptoms started. It took 5 years and lots of research on my part to finally get her to an Autonomic clinic 8 hrs away to get the Dysautonomia and Autonomic Neuropathy diagnosis. We still do not know the cause of the Dysautomia and Autonomia Neuropathy. The approx. 15 different specialists that were within a 80 mile radius could not diagnose her. These areas included teaching hospitals and children's hospitals. We are 30 miles north of New Orleans. A couple of Neurologists guessed at Dysautonomia but said they did not know enough about it to test or treat her. kkrylee

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My daughter was 13 when the severe symptoms started. It took 5 years and lots of research on my part to finally get her to an Autonomic clinic 8 hrs away to get the Dysautonomia and Autonomic Neuropathy diagnosis. We still do not know the cause of the Dysautomia and Autonomia Neuropathy. The approx. 15 different specialists that were within a 80 mile radius could not diagnose her. These areas included teaching hospitals and children's hospitals. We are 30 miles north of New Orleans. A couple of Neurologists guessed at Dysautonomia but said they did not know enough about it to test or treat her. kkrylee

So sad. So hard when it's our kids. My son was stricken a year before your daughter. How is she now? Is she 18 yet? Makes it easier and harder at the same time to find help. Easier, because there are so few pediatricians who specialize in this & harder because if she's found good help, she has to switch doctors now.

Has she seen an electrophsyiologist (specialized cardiologist) for a tilt table test? That seems like a good place to start. My son also has nerve damage in his GI tract, etc from an autonomic dysfunction and we don't know exactly why he has it either. He got sick after a GI virus and may have some connective tissue problem...we're still working on it too.

Thanks for sharing your story. I'm so thankful to hear from everyone. So far our stats tell us it takes around ONE year on average to get a DX, but it's quite telling that the next highest category is TEN years. The more people who vote, the more accurate our stat. Thank YOU & please keep voting!

Julie

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Julie - I'm just wondering how your son was diagnosed with a nerve issue in his GI track? Thanks...

I wouldn't wish it on any one- It was pretty awful. He had an antroduodenal manometry (tube down his nose, passed his throat into his stomach and small bowel DURING his TTT. The fact that he barfed (with all of that equipment measuring pressures) at the same time he fainted- an imeasureable BP, was proof enough that the autonomic dysfunction was linked to the GI woes. But, the diagnostician who deciphers the yards and yards of tapes from the 24 hour manometry additionally looked for a certain trend with GI measurements/pressures that fit a nerve dysfunction pattern as opposed to a muscle dysfunction pattern.

Julie

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  • 1 month later...

I voted 2 years. My symptoms began abruptly and severely in Dec, 06. By Feb, 07 I was already getting better after weeks of being bed-bound and since no one could find anything wrong, it was dismissed as anxiety. I was content with that and for the next two years took Xanax on occasion and was steadily improving....until I got my molars extracted in Dec, 08. Then I got really crappy and pushed for a diagnosis other than the anxiety. Finally in Feb '09 I went to Europe to do tests and had to literally beg a dysautonomia specialist in Bulgaria (my home country) to give me a TTT. He laughed and told me to see a psychiatrist, but that he would give me the TTT anyway because he had some med students with him and it would be interesting for them to see what a TTT was. 2 minutes after the TTT started and my pulse doubled, he wasn't laughing anymore and was lecturing his students on what POTS is. I would have pushed for a TTT earlier than 2 years if it hadn't been that I was improving prior to the molar extraction.

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  • 1 month later...

From my sudden disabling symptoms (viral infection in November 2004 lead to fainting repeatedly on a daily basis) to my TTT and diagnosis was only 7 weeks. I was very fortunate to already be under the care of a cardiologist who knew about POTS and had other patients with POTS. As soon as I started fainting he said "I think you have POTS, I'll organise a tilt test".

However, looking back at holter tests done several years earlier (for episodes of unrelated palpitations) I did have a persistent sinus tachycardia 120/min when standing. At the time I complained of fatigue and intermittent breathlessness but the symptoms were dismissed. I had had a knee injury and surgery the previous year. The pain and sudden cessation of sports lead to depression. I was also studying very hard for major exams. My fatigue and general "bleurgh" feelings were attributed to "stress" and were not investigated.

Knowing that I have EDS, I suspect that had a TTT been done several years earlier that I would have met the criteria for POTS.

Flop

(I answered less than 3 months)

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I answered 3 years that is for my kids as they have a diagnosis of 'ANS dysfunction probably POTS' that's the cardiologist wording not mine!

I myself have had symptoms since I was a small child with beg flare ups in my early 20's then mid 30's now mid 40's have moderate symptoms all the time! But I do not have a diagnosis of ANS stuff only of EDS. I am on 2 meds for high swings in BP, poor circulation, arrhythmia etc. But this is all put down to me being over weight, and unfit though, I did start with these problems when I was young and a fit gymnast, but you know some Dr.'s will not listen!!!

Anna

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  • 3 years later...

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