Got A New Diagnosis-Grrrrr

[Debbie Rose]

:( At end of appointment finally found out there is no one who is familiar with Dysautonomia even though they still have a plackard up indicating a clinic...GGRrrrrr, So my diagnosis-Anxiety!!!

She put a tuning fork on my forehead and since I only felt the vibrations on the right side-it was a trick>should be felt on both sides; she determined it was Anxiety! Yet then admitted to knowing nothing about dysautonomia. So now I must try to save money (not too big a deal) and time from work-very hard to do since I have bad days ALOT! So off to Mayo in Fla this winter I guess...Didn't even look at MRI, took a blood test to check Sjogrens.Oh yeah! SOrry but it was an exhausting anxiety causing day...AND my BP was fine there!...so more frustated

[Chaos]

Oh dear! So sorry you've had to endure one of THOSE appts. These are the type that leave me feeling totally frustrated, angry and questioning my own sanity at times. It makes me so mad when doctors don't know what to say about your condition so they try to push it off as anxiety or depression. It made me feel better when I went to Cleveland Clinic to their autonomic clinic and the doc told me she had never had a patient referred to her who did NOT have a diagnosis of anxiety or depression or both in their medical history.

Wish it would have been better for you. Hopefully the next time around will give you more answers.

Sending you hugs!

[Dizzysillyak]

Hi,

Sorry to hear you had such a lousy appt. I just had one of those myself.

I gotta ask.. Are you joking about someone putting a tuning fork on your forehead and concluding you had anxiety ? I just can't picture this without

cracking up. What kind of doctor was that ?

I had a chiro use a similiar object attached to a machine on me once. He insisted it could tell him

what foods I was intolerant of. It was going well until he didn't agree with the machine and he said it

was broken. I should've left right then but I was too sick.

Tc .. D

[jpjd59]

DebbieRose:

So sorry to hear that your appointment didn't go well. Diagnosis of anxiety, really.... you would think the doctors could try harder than that! My daughter has quite a few doctors tell her it was just stress, anxiety, etc. until she finally got her dignosis of POTS.

Don't give up. You know your body best and you know what is normal and not normal for you. Be persistent and you will finally find a doctor who wil listen.

Pam

[McBlonde]

So sorry!! If only it were "just anxiety", right?! What I find so distressing also, is the energy it takes to actually go to the doctor's appointment only to feel like your time was wasted! So often I say to my husband, I have to wait until "I feel better before I can go to the doctor"...... and then when you get there and it's a wasted trip, it is just disheartening!

[Birdlady]

Oh my...I am sooo sorry you had to go through this.

[RichGotsPots]

Yup this has happened to me more times than I can count.. Rheumy wouldn't test anything. Neuro muscular doc would do any testing.. Pulm wouldn't do any testing. I just keep pushing on. Occasionally u find a doc that is open minded and will go above the call of duty, but those are rare. I've had 3-4 though, so don't give up..

[NMPotsie]

Today my bp was 141/98 in the dr.s office and the doctor, who said he treats pots, offered me this wisdom:

1) I don't have pots because my bp is high, and it can only be low if you have pots.

2) I have white coat syndrome, which is why my normally low bp is suddenly high.

3) I need to learn to calm myself down because my amines are out of control. From the neuroses. I kid you not.

I left his office with a script for xanax for my anxiety. This is the 14th "local" neurologist I have consulted to help avoid the 7 hour drive to Mayo Scottsdale. Of those 14 visits, I have collected 9 prescriptions for anti-anxiety medications, 2 for anti-depressants, and multiple referrals to psychiatrists. This is AFTER they read my records, which include tilt-table testing and Dr. Goodman's diagnosis and notes.

I feel your pain. Next time I will request a tuning fork.

[sue1234]

Yep, I agree with Pam, anxiety is the lazy diagnosis. OF COURSE we have anxiety, as everytime we stand up our catecholamines are spewing out in our body to try and keep us stable(which either doesn't work or overcompensates).

That is like diagnosing a pregnant woman with an "extended abdomen" diagnosis(sorry for the stupid analogy, but it makes my point). OF COURSE she has an extended abdomen due to the underlying cause.

[Dizzysillyak]

"extended abdomen" .. Too funny .. Tx .. D

[Debbie Rose]

Thank you for all your kind words and advice...Yes, she used a tuning for to my forhead....Oh and she agrees I have some numbness and parathesia and than can lend to balance issues-but it can be from anything!!

So I accidentally found a short term relief of symptoms and maybe someone can explain it.

My mom fell at IHOP while we were leaving the rest room. They had rolled up carpet right next to it. She hit her head hard and immediately a goose-egg formed...So I insisted they call Ambulance and we went to ER-CT was OK and she is fine

OF course I know I had an adrenaline rush...As a nurse I have experienced under emergency situations...I am always calm in such situation but my adrenaline is not..... then the crash and headache followed

All the rest of the day and part of next I had no tachy HR/BP drop issues

Did I run out of my adrenaline???

[anna]

Thought I had heard it all! But tuning folk on forehead trick, now surly if this so called Dr. is adamant that you should have felt it on both sides she might want to be a little concerned that you only felt it on one side! Not just assume you made this up, so know how you feel though. Sorry you have to put up with this will feeling bad as well.

[Libby]

Gah. Stupid doctor. I'm sorry you had to deal with that.

I've never heard of anyone using a tuning for like that before, to trick you into saying something that's medically 'wrong' so they can tell you you're crazy and feed you xanax. Ridiculous.

[Millerla]

Oh my goodness, I totally get the anxiety diagnosis. Even now, with my diagnosis of POTS, my friends, family, and local doctors all still think that it is anxiety based. I saw a psychiatrist, who suggested I do deep breathing, which, for whatever reason, makes my hr go up. (During my TTT, the doctor doing it commented on the fact that whenever she had me do anything out of the normal, my body wacks out.)

But my mom still wants me to get a psych evaluation here(Even though I had 2 different ones at Mayo) and my meds changed. Right now I am taking Fluoxetine(Generic Prozac) on a small dose.

The last time I went to the therapist, she had me take a test to determine how bad my anxiety was. I scored on the "Moderate to high anxiety", but 98% of those points were from the physical symptoms it asked if I had. (Heart palpitations, racing heart rate, dizziness...) Sometimes I honestly think I know more than the doctors that see me. I know I don't, but I definitely know more on this subject.

I also recently figured out that what I thought were panic attacks, were actually adrenaline surges. For some odd reason, this makes me happy, because I was tired of explaining that I didn't know why I got random, unprovoked panic attacks.