612876 tn?1355514495

What Stage Are At In Getting A Diagnosis

How far along are you in getting a diagnosis?  (Note that the option of "I've been told a specific subtype of dysautonomia, but the underlying cause is still being investigated." does not apply to all subtypes, as in some subtypes there is only one root cause.  If you have any questions about this poll, feel free to ask me and I'll be happy to clarify.  Thanks!)

In addition, it might be interesting if people note in the comments how LONG you've been trying to get your diagnosis (in years).  If you're comfortable sharing that information, feel free to leave a comment on this poll indicating how many years it was between the onset of your illness (or when you started seeking diagnosis) and either when you got your final diagnosis, or if you don't have a diagnosis, now.

16 Responses
Avatar universal
I have a diagnosis of NCS, POTS, and OI and am told its from my ms.  So I guess you can say I have a diagnosis with a clear subtype and etiology.
I am not convinced though.
I also received this diagnosis within 2 years of clear onset.
612876 tn?1355514495
I know that I have dysfunction of both my autonomic and sensory small fiber peripheral nerves.  So far, from the biopsy sites that were taken, it seems that the nerves are not permanently damaged but just malfunctioning; however, from what I could see from the feedback given with the biopsy results, I also understand that this is inconclusive given that I have patchy neuropathy and it may just be that the two tiny punches they took happened not to be at sites which had affected nerves.  I do know that we did not biopsy the worst affected area.  (I'm still hoping to hear back that my neuromuscular doc wants to go forward with a biopsy of that site, but I suppose I shouldn't hold my breath.)

I also know that there is extensive malfunction with regard to vasoconstriction in my vessels, which leads to significant blood pooling and thus orthostatic intolerance symptoms (even despite both fludrocortisone and midodrine).

As to whether this is a hereditary autonomic neuropathy or an autoimmune autonomic neuropathy (which are my best two guesses, though I suppose there are other possibilities??) ... the verdict is still out.  So for now I have autonomic dysfunction, not otherwise specified; syncope; OI; idiopathic small fiber sensory peripheral neuropathy.  

Oh, and I will hit my 5 year anniversary with dysauto in August.  Getting close to being able to answer "yes" to the "five or more years on disability?" Medicare question at the hospital.  (Anyone else have those Medicare questions memorized at this point?  I think I know all of them by heart.)
875426 tn?1325528416
I was diagnosed with IST and later with POTS via tilt table test in 2004.  I know I've had abnormal numbers of various catecholamine related numbers at various testing times, but have never had a standing norepinephrine test.  I've had no doctor try to figure out what subtype of POTS I have, but I suspect hyperadrenergic form.  I've had holter monitors a couple of times in  later years demonstrating continued orthostatic intolerance, including one just recently.  

I had a doctor in 2007 willing to order 24 hour urine for sodium, which I read when under 100 m/eq , that's consistent with hypovolemia & at that time, my salt level, though in normal reference range, came back at 81.   She was unwilling to test for MAST cell activation disorder, which I thought I might have had, because she said even if I had it, I could not take the treatment due to my tachycardia, so she felt there was no point.

My GFR (MDRD), a calculation of kidney function, was estimated at 81.2 (low for someone my age) in 2009 & later that same year, my volume on a 24 hour urine has been flagged high at 3,975 ml (ref. range 400-1800, but my doctor is not concerned about these numbers.  

I am thinking of asking for ANA testing, since evidently that can sometimes be abnormal in dysautonomia.  I don't know if the doctor will order it or not, but he's usually nice about ordering things I ask for.  
1512628 tn?1304974064
I am 30+ years in my diagnosis.  My fainting started as a child from a sever case of heat stroke.  Ever since then they would always write it off to dehydration.  Then as I got older it was stress.  Then it was because of low blood sugar. Then... Well you get the idea.  Two years ago I fainted getting into my car and fell into the street... and that's where my true journey began.  Two years later... salt, fluid, midodrine, florinef and a wheel chair!  So now that all the area specialists have finished with me my PCP is finally taking things into her own hands!!  She is the best doctor I've ever had and she is set on finding me a life beyond crawling to the bathroom and lying in bed!!  She is looking into sending me to Vanderbilt.
Avatar universal
It took 8 years to get a diagnosis. I have IST and POTS, but my ep doesn't know what caused them and I still keep getting new symptoms! I got my diagnosis a year ago.
875426 tn?1325528416
Looking back at this poll again, I'm not sure I answered it right.  I've been diagnosed with specific things within dysautonomia, such as POTS and IBS, for example, but not the specific sub-type of POTS.  What did you mean by sub-type?  And the underlying cause hasn't been being investigated, and I'm not sure if I really fit into any of these choices?
875426 tn?1325528416
Saw doctor today and he says ANA test isn't very good and didn't feel it would shed any light on my P.O.T.S., so he wouldn't order it.
Avatar universal
Hi Heiferly!!  When this became severe and till now when I just got diagnosis, it took 5 long years!  Mostly because no good doctors available in the Las Vegas area.  But Doc at Mayo says I still have some unexplained issues.  So for now, I'm done with the testing.  Yay!
1481176 tn?1291392092
The closest I have come to a specific diagnoses is that I have "some kind of autonomic dysfunction."  I started, in June, 2010, with nausea, headaches, headaches, instability and some weakness.  At the VA Medical Center in Manchester, NH, 3 visits to the Urgent Care Unit and all 3 times I was told nothing was wrong with me.  I returned home to GA in September and that started several trips to VA doctors and the VA ER in Decatur, GA.  I got  adiagnosis of sinus bradychardia at my first ER visit, the next visit was orthostatic hypotension and a lot of my meds were discontinued.  The third led to a 3 day admission and the "some kind of autonomic dysfunction" diagnoses.  I saw a neurologist who said I did have AD and some neuropathy in my legs and was told the VA Medical Center and Emory Hospital could do nothing.  I was referred to Vanderbilt in Nashville and was told there was some AD but they did not know the cause.  The Vanderbilt expert and my VA neurologist both say they do not know the cause.  They say I do not have the classic, clinical symptoms of Parkinson's but they cannot rule out the initial stages of Parkinson's or Multiple System Atrophy (MSA).  I looked up MSA.  That is nasty so I decided I don't have that.  So now I have to wait for more tests (I am waitlisted for some at the VA and probably have to go back to Vanderbilt for a QSART, Whatever that is.  The VA and Emory hospitals cannot do that one.  They do not have the equipment (The VA and Emory work hand in hand with each other, by the way.)  So I go on the way I am and I know my wonderful wife is much more concerned an worried about my condition than I am.  I have good times and bad times.  But I know it is, slowly, getting progressively worse.

I found a quote in the nurses office at my VA clinic I loved and thought I would pass on:

"Life is not the way it's supposed to be.. It's the way it is..
The way we cope with it, is what makes the difference."

I hope and pray for good health for each and every one of you.

Bless your heart!
Avatar universal
Thanks for sharing the wonderful quote!
I hope you find some answers soon.
Avatar universal
For my son, it took 3 years to diagnose.  But, his symptoms started out slowly and kept adding one symptom at a time and severity slowly increased, making it originally hard to diagnose.  He has been diagnosed with POTS and no other sub type.  When he had a 7 inch growth spurt in 15 months, his symptoms became daily and much more severe.

He was diagnosed in June 09 and has had his ups and downs.  He had a great 7 week stretch last August thru early October, other than that it has been a struggle.  

Right now, he is still sick every morning, but afternoons and evenings are tolerable.

1481176 tn?1291392092
It's hard enough for an adult, like most of us here to deal with Autonomic Dysfunction, especially as it does seem to get progressively worse as time goes on.  It has to be much worse for a child to deal with.  I feel awful that a child has to endure this.

Another ting I am curious about.  You say he is sick every morning.  I have had constant nausea for almost a year now.  Last week I was finally given promethazine for the nausea.  It seems like it may be helping a bit.  Both Neurologists at Vanderbilt and the Atlanta VA say nausea is not a symptom of autonomic dysfunction but I think I have noticed a lot of people on this site say they do have nausea.

Avatar universal
My son's doctor does say his nausea is from the POTS.  They did lots of testing to determine whether it was neurological or a GI problem.  They finally determined it is neurological in his case, especially since the Cymbalta has helped with it.  Last fall, Doxepin was also very helpful, but only lasted 7 weeks.

It is sad when this happens to anyone, but children lose their childhoods.  He no longer attends school, he also had to quit soccer and baseball.  He is a great kid though and handles this very well.

Avatar universal
I have had symptoms for several years but have been severe with this since May 2009.  I had a Tilt Table Test and was diagnosed with POTS, this was then changed to 'probable' POTS until Aug 2010 when a POTS specialist confirmed this.

My cardiologist originally felt that I had an underlying condition causing or adding to the POTS symptoms, but all the tests he done were either normal or inconclusive.   An adrenal growth has also confused dx for me.  

Now it is thought that Ehlers Danlos Type lll may be a cause of this for me.  This is believed due to the blood pooling I have due to poor
Avatar universal
don't know what I done then but I somehow posted the above post before I had finished...lol...

...due to poor vasoconstriction in my blood vessels and the fact that I have some hypermobility.  I awaiting assessment for this by a leading Professor for this in the UK who also has good knowledge of POTS.  Previously pregnancy was a possiblity as a start of this for me.

I did have some symptoms that could possibly be caused by POTS in my late teens but it has been since 2002 that I have had 'definate' POTS symptoms.  So from this I would say that it has taken 7 years to get a possible dx and a further year for an official dx.

Avatar universal
It was not earlier than now I found this forum community. I have had dysautonomia-like symptoms for tens of years. A few years ago (in 2006) I asked for a test for dysautonomia. My results differed from the normal. The conclusion was that the result was normal but the differences possibly resulted from sympaticotonia.

Is sympaticotonia not a part of dysautonomia?

A couple of weeks ago I discussed with a neurologist about my previous and present symtoms and asked whether I have dysautonomia. He said that dysautonomia is suspeted.

During  the last few years I have had POTS sometimes (a diagnosis by myself), but it may belong to hypothyroidism. My blood circulatory system reacted very differently at different times of posture changes (sometimes POTS sometimes something else). I think there was no logic. I had often tachycardia episodes on 1970's anf 1980's and sometimes later.

I have weak bladder muscle, general muscle weakness, dysphagia (this is not now), tremors. The symptoms vary in strength and may be lacking sometimes. The circulatory disturbances are fewer now, I have medication to prevent atrial fibrillation and it may prevent also tachycardia. I have only had one 6 month period of persistent atrial fibillation, it was in last year. Nowadays I have slight tachycardias seldom.

The neurologist said that I may really have too much adrenaline and the parasympathetic function is too weak.

It is a wictory to have, after tens of years, a diagnosis dysautonomia susp.!
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