Pin-pointing diagnosis?

[Marinella82]

Dysautonomia is such a broad word how did you guys get a more specific diagnosis such as POTS or Hasimoto? My doctors never really gave me a specific name they just said i have Vasovagal Syncope but I have multiple symptoms.  I go to a cardiologist and neurologist but they don't seem to communicate specifics.  Is there a test they can do to pin-point diagnosis so I may properly treat the symptoms?

[tonyad]

   Do not know how I missed this post. I apologize because I thought I had already wrote something...Oh this goofy brain of mine...   :0

    Actually your A.D   DOES have specifics, meaning...Vasovagal Syncope. Other names for it include fainting, Neurocardiogenic Syncope (NCS) and Neurally Mediated Syncope.

    I actually have NCS Or...what your doc is also calling Vasovagal Syncope as does several here on the Forum.  So you actually do have a Name for your AD just like POTS but your is called NCS.

    Hope that makes sense.....i have a couple links if you need them let me know :)

Take CAre,
~Tonya

[LivingInHope]

While I wasn't thinking of stress and depression, it sounds like you have been through an awful lot of stressful doctor situations and if you aren't feeling stressed by all this, you are very blessed!  

Sounds like you have done a great deal on the cardio side of things and at least one doctor who is a neurologist, who evidently didn't order an EMG.  It's good you have a normal lipid panel.  I hope you are being careful to protect your stomach with the aspirin!  I currently am suffering from frequent heartburn and recently was started on cytotec generic.  Ibuprofen is what I have had to take a lot of.

  Has your potassium been measured?  Low potassium can cause muscle cramping.  But a number of your symptoms including muscle pain fit right into Lyme's disease (see private message).

[Marinella82]

I have seen a at least 5 cardiologists, a neurologist, an infectious desease specialist, and many other doctors and specialist in the hospital and out since i have been hospitalized for this twice in the past year and ended up in the emergency room about 15 times.  I have seen probably about 50 doctors total.  I am 27 years old, I have a normal lipid panel, normal sugar levels, normal weight, i exercise regularly and even eat mostly organic.  Everything is normal except for the tilt table test.  About a year ago i developed Lyme meningitus that cause some nurve damage and at the same time i developed an arithmia and tackycardia.  I had a tilt table test and it was positive and was told that my Vassal vagal vein was scard probably due to the lyme disease.  I was ill for about 2 months and then my syncope episodes went away and they were taking me off the meds.  All of the sudden recently I started getting syncope episodes again and all the symptoms are back but this time have numbness and shooting pains on my left side.  They said I didn't have a stroke in fact no doctor knew what was wrong with me.  They said there are many things we as doctors just havn't discoved enough about and your case is unusual.  As soon as my episode went away my numbness went away after a month but now I have what i can only describe as arthritus, stiffness in my joints especially my neck and hands, and charlie horse feelings on both sides of my body.  I don't know why they didnt put me on an asperine regiment but my mom has me on one since the stroke scare so i take one a day now.  Let me point out I do not have a lot of stress and do not suffer from depression.  

[LivingInHope]

Also, with your various eye symptoms (light sensitivity and blurred vision) have you seen an opthamologist about them yet?

[LivingInHope]

Looked at your list of what your are taking and it doesn't look like any doctor has you on aspirin or plavix for what sounds like TIAs- have they said why they don't feel that is necessary?  Have they decided you are not at risk for full-blown stroke given your left sided numbness and speech symptoms?  What is your lipid panel like... was there  high LDL, low HDL.. high triglycerides?

What is your ferritin (iron stores) number?  My doctor says that is the best number to look at to see how you are doing when it comes to iron in the body.  And when was the last time you had this tested?  Numbers can change pretty fast and low iron can really affect a person- extreme fatigue, in the case of myself w/POTS- worsened tachycardia (person w/out dysautonomia can get rapid heart rate with low iron), headaches, etc.  Potassium is a mineral- has that been tested?

An EMG is an electromyelogram- it's usually done in conjunction with a nerve conduction type study.  They use a needle and measure the response in your muscles in your affected limbs to see if it is normal.  With your numbness issues on the one side, you might want to ask your neurologist about it.  

Endocrine hormones- one would be thyroid function, but there are more.  What about aldosterone and cortisol?  (See private message on Addison's disease).  And what about estrogen (if you are not a male as your profile says)?  Also, do you find that you have to go a lot, even if you aren't drinking much?

[mtgardner]

It is sometimes difficult to diagnose when there are so many symptoms all at once because you may have more then one thing going on and most probably do .  As you identify each problem and treat for it some of the symptoms fall away and it becomes easier to look at what is left.  Also they sometimes interact so fixing one lessens the effects of another.  It always amazes me too how some doctors stop short of the whole story.  If you find your conversion of the thyroid free T4 to free T3 is low, wouldn't you automatically want to test for the precursors involved in the conversion?  Evidently not.  Therefore I have not yet been tested for selenium levels and others even though I have low free T3.  

I have no doubt all of my medical peculiarities have not been identified as yet.  Forty years ago I had distorted hearing, loud sounds coming and going, and was discovered at that time to have a heart murmur.  The doctor I saw put it all together and did a TSH and T4 test and identified low thyroid.  Only 2 decades later did anyone bother to test for antigens when I asked why I and all the women going back to my grandmother had low thyroid and found I had Hashimotos.  They said having it didn't really mean anything special and I didn't give it another thought.  Two decades later realizing while my initial hyporthyroid symptoms cleared I still had others that had been there for a long time I asked for a free T3 test.  It is low and I am finally put on a free T3 free T4 medicine which I might very well have needed for the last forty years.  Also the Hashimotos indicated autoimmune disease which is important.

As for my dysautonomia,  I had been having some transient hypotension for several years.  I had noted it in hot weather, when I coughed until I almost passed out, and in the afternoons.  I had told the doctor I saw at the time and he dismissed it.  I changed doctors and we started tracking the episodes which were also worse after lunch.  I also noted shopping after lunch caused really low blood pressure. Only later did I realize it was the long standing on top of low BP after eating carbs.  It all seemed very odd at the time.  My doctor thought it might be related to the kidneys as they have a lot to do with low BP.  He sent me to see a nephrologist.  He is someone who really listens carefully.  After doing his kidney testing and not seeing anything glaring although a few of the numbers had a trend downward, he listened some more. When I told him I almost pass out when I look up at tall trees and when I bend over then stand up he ordered a tilt test.  That showed that when standing my BP bottoms out and my heart rate does not increase.  They describe that as postural hypotension without cardiac compensation.  It means they said I have lost the innervation to allow the heart to speed up when my BP drops.  

Then I was sent to a neurologist for official diagnoses.  He went through his tests after an MRI of my brain was done.  The MRI showed I had 10-12 small strokes due he thought to my untreated familial combined hyperlipidemia.  He viewed this as a seperate problem fromthe one he was diagnosing which he termed Pure Autonomic Failure. I was pretty much told by all my doctors they don't know much about it and I should read up on it on the net.  They left it right there.  The neurologist didn't seem to want to treat someone with it.  One other neurologist had refused to see me as he didn't feel qualified.  I don't think the one I saw felt qualified either as he handed me back to my regular drs like a hot potato.  The only chance I have of finding out why I have PAF is to get autonomic testing at one of the big centers or get into a study.  I don't live near a center.  I am also acutely aware a lot of other things start out looking like PAF and morph into something else down the line.  I need at least 5 years with this dx. without other things developing to believe it is my final dx.  

In the meantime the tendency to stroke has been addressed with aspirin, the familial hyperlipidemia addressed with high doses of niacin and now WelChol, and the combined thyroid problem with Armour.  I read what others say on forums and realized I might have low D.  I asked to have it tested and it was low so I am now on D supplements.  I am developing a swallowing problem and neuropathy and suspect I have a sleep disorder.  Still working on figuring out those.  

I would say the tilt test and the testing of antigens and free T3 and free T4 as well as the more commonly tested TSH were the most helpful as well as the brain scan for diagnosing so far.  Doctors always try ruling out this and that but often it takes a definitive test to identify the problem.  I also had a cardiac echo with no negative results and numerous blood tests.  My potassium does fall sometimes.  I suspect some of the trace minerals involved in conversion of free T4 to free T3 are low as well.  Haven't been able to get testing as yet or an ultrasound to see if I have thyroid nodules that might contribute to the swallowing problem.  It just takes time to address everything.

I would also like to say that when it comes to thyroid, be sure all your numbers were tested as some doctors only test TSH and free T4.  Make sure you had the antigen tests and the free T3.  Get a copy of your test.  If you have hypothyroid symptoms and your free T3 and free T4 are in the low normal range some doctors believe you should try a course of a low thyroid which supplies those two.  This is because the range of normal was done before they realized that a large proportion of the people they tested had undiagnosed hypothyroid.  They later went back, only a few years ago, and changed the TSH range but didn't change the free T3 and free T4 so they are artificially low.
Some doctors don't recognize that.  Others religiously go by TSH alone.

Read as much as you can and seek out doctors who can help you one thing at a time. I hope you find some answers soon.  If you are able to go to Mayo or one of the other large good diagnostic clinics with autonomic testing centers  you no doubt would find your answers much faster. From my time line you can see what happens when you  have a less focused approach without a a concentrated group of curious minds seeking answers. Good luck!
One of the wisest things you have already done which is come to the forum as you get many good ideas and support.   Marie

[Marinella82]

I am not sure about the endocrine hormonal testing is that my thyroid?  I was negative for thyroid problems.  My iron count was low when i had lyme but normal now.  All my vitamine levels were fine except for D.  I have never had an EMG not even sure what that is.  I am on a number of meds but on propranolol and midodrine for the attacks.  See full list in my question about midodrine side effects.

[LivingInHope]

I think tachycardia itself can make a person feel wired.  With your blood work- did you get any endocrine hormonal testing?  What about iron, ferritin and potassium levels- any of those low?   It sounds like you are having TIAs with the numbness on one side of your body, etc.- are you taking any medicine for these attacks?  Did they do an EMG on your left limbs?  

[Marinella82]

I have multiple symptoms.  I will be fine for months then without warning I'll just faint.  This seams to start about a month or two of constant syncope episodes, dizziness, headaches at the back of my head that won't go away with any meds, a feeling of burning up but my temperature is normal, hot and cold sweats, heat intollerence, swollen feet, discoloration in hands, feet and face, novicaine type numbness in left side of body, blured vission, my eyes don't stop crying, severe anxiety wich i never get when im normal, trouble speaking, completely comprehensive siesures, extream fatigue all day, insomnia all night, hightend sensitivity to light, and noise, and low blood pressure, weakness in limbs on left side of body to the point that i will limp or drag by left foot and cant use lift anything or clench my left hand into a fist, tackycardia, chest pain, stomach problems.  These last for a month or two and literally go away on thier own and a few months later come back almost instantly without provoking stimulus.

I have had 2 MRIs, a CAT scan, spinal tap,  EKG, Ecco Cardiogram, brain wave test, tilt table, many blood works, even tested for poisoning, tested for lupis, MS, Meningitus, etc, even for injuries to spine or brain trauma because i had an old injurey 11 years ago.  All were negative except for the tilt table wich was positive.  I did have Lyme disease and believe that it is related and caused my Auto. Disfunction.

[CHRISTYDRAKE]

When my son was originally diagnosed, the cardiologist just told us autonomic dysfunction.  He didn't run any tests and just based it on his symptoms.  After seeing the autonomic specialist he had a tilt table test and was told he had POTS.  He was also given a thermoregulartory sweat test and diagnosed with small fiber neuropathy.

[lilmissposey8088]

I'm not an expert on this by any means but to get further diagnosis I would suggest talking to your doctors about the other symptoms and doing research on your own and suggesting further testing be done. I personally had to research my condition and ask my EP to do the testing I needed. I have Hyperadrenergic POTS and it took years of testing til I finally took steps of my own to get answers. I asked my doc to do the tilt table test for me, which is the main test in determining if you have POTS. What other symptoms are you having? What tests have they done? There are a lot of different things that it could be with Dysautonomia. The people here are very helpful in giving advise on the many different types of dysautonomia. Hope this helps a little and if you post some of your other symptoms I may be able to help more.