Problems With Tilt Table Test Diagnosis - Need To Present 3 Symptoms?

[IceSkate]

I was wondering why, this past fall, my doctor did not diagnose me with POTS. In the summer, I experienced severe lightheadedness, headache, wearkness, fatigue, twitching in my legs when I lay down, and by fall I had numbness throughout my body and could not taste. Prior to that summer, I had problems with blurred vision, constipation, abdominal pain, and insomnia.

I had my test in October, when most of the symptoms were gone or had decreased. My heart rate went up from 60 to 120, but I only felt slightly lightheaded.

I saw this article, http://www.cfids-cab.org/rc/Brooks.pdf, which says in the second paragraph that POTS is diagnosed when the heart rate goes up over 30 during the first five minutes. I originally thought it was during the entire 40 minute test. The article also says it must be accompanied by 3 orthostatic symptoms. Perhaps the doctor said I did NOT have POTS because I was feeling somewhat better at this time.

Still, he would not explain to me why my heart rate was going up. Their conclusion was anxiety. Maybe it was... I certainly have always had anxiety issues, but how could I have all those symptoms and it just be anixety?

Has anyone done tilt table tests and had the results come back negative for POTS, and then later had a test positive for POTS?

I have been symptom-free since mid-November. I made an appointment with a neurologist to discuss the numbness and lack of taste, in case it wasn't POTS, even though my doctor thinks it's uneccesary. I was just thinking about this last night as my appointment was soon, but I will have to post-pone it due to work.

[MomtoGiuliana]

Hmm, not sure why you were not diagnosed. It would be interesting to know your doctor's explanation.

[IceSkate]

I think it would be interesting, too. I messaged him and he only said "I don't think you have POTS." So, I asked him about the tachycardia and what caused that, and what was a normal heart rate increase, but he only said, "I still don't think you have POTS." He really wasn't answering my question.

I just want to make sure if it is POTS, that it was only POTS and not something else because the lack of taste and numbness are pretty weird.

[E246]

I have only tested positive on one of my 6 standing tilt test - sometimes i was feeling better sometimes i was on meds and once i had tights on. Yet there is no question i have a serious illness and i am sure it is pots and it has been confirmed as such. I don't think doctors understand that it can be intermittent. This has been an ongoing problem for me. I even went to London for tests and on that day was great and the next day could not stand for dizziness and vomiting with tachycardia.

Can you keep a record and go back? Or find another doctor?

[Maiysa]

Hello Ice Skate,

I just wanted to tell you that during a 2 year bout with an infection I was told after a four day stay at a hospital that I had some form of POTS and was sent to a cardiologist. It took months to get into him and by this time they were treating the infection so the POTS situation started to get better, but was still fainting and having many other issues. But local neurologist felt I still was having some symptoms for dysautonomia-dysfunctional autonomic system. So, I went to Mayo and had a negative tilt table test. But then while in a different situation I fainted and blood pressure was all over the place. Doc said, for me, the fact that the tilt table test was negative, could have meant that it just wasn't my trigger-which was strange since I fainted the entire car ride there. If nothing showed up during my visit at Mayo he was going have me do something that makes this situation of blacking out and nausea happen so they can get a reading and retest the tilt table. But they did the QSart test and mine was positive for autonomic neuropathy with orthostatic intolerance which explained most of my issues. MY blood pressure can go 30-40 points higher if my system is off balance and then my brain is getting the wrong message making my blood pressure drop as low as 58/36. I'm not saying that you have what I have because it does sound different and I don't know a lot about POTS, but for the QSart was what diagnosed me. These machines are rare, but Mayo has them if you are near either facility. And I don't know much about your situation, just giving you some ideas since I do have a few similar issues you have. But of course, they could mean many other things.

Can I ask where your numbness is? Because for a few years this was one of my biggest symptoms that was a clue for my doc. Also, I have to tell you that the summer issue is interesting. I can do much better as long as I don't get too hot. I've been exercising as of late and am curious if this has caused my situation to flare up. Heat is not my friend.

Also, I had leg twitching. But my legs hurt also, mostly in my shins. So, do your legs hurt? Or is it mostly twitching? So glad you are going to a neuro. Hopefully they will help you. I was diagnosed with restless leg syndrome, but I was sensitive to most medications, so I decided to read about it first. I read that most restless leg syndromes are mostly from anemia. So I got a blood test and I was very anemic, but it mostly showed up in my ferritin levels, not my red blood cell count. My numbers were so low that I was a candidate for a blood transfusion. For me I chose to take iron and within days my legs felt somewhat better, but wow, what a difference in a month. But don't take iron unless you talk to your doctor! Always check with doctor first! Iron needs to be monitored. Red meat is very helpful too. But now I have some twitching in my fingers and I know this has nothing to do with anemia and is probably the neuropathy. Just giving you some ideas to work with.

Hope you can find some answers soon. PS, remember I'm not a doctor...just a patient. Let me know if you have any other questions. Good luck!

[IceSkate]

Hi Maiysa,

Fortunately I had no BP changes during my tilt table test. I have also never fainted.

The numbness was present throughout my entire body for 2 and a half months. I also could not taste anything for 2 and a half months.

I was able to feel if something was touching my skin, but it was like my skin was desensitized... like it was only 50% as sensitive as it normally is.

Then the numbness went away and the taste came back over about a week.

I'm hoping this is all related to POTS and not something else like MS.

[potsgirl]

Is it possible for you to go somewhere like one of the Mayo Clinics? You could go to either the one located in Rochester, MN or Scottsdale, AZ. I'm not sure how much autonomic testing they do at the facility in Florida...There is a list of doctors known for their work with dysautonomia listed on the home page of this site. I think that getting a second opinion would be very beneficial for you.

Hope you feel better soon!

[IceSkate]

I was actually turned down from Mayo. I listed my symptoms and they said they couldn't take me. Fortunately, I am not experiencing symptoms. I'm just worried that it could be MS