Seeing Dr. Amer Suleman - Anyone Have Any Questions For Him?

[martiz]

Hi group,

I am traveling to see Dr. Suleman in Dallas tomorrow. I have 3 autonomic books that I didn't read (just scanned). I was planning on having a list of questions but have been busy getting ready and mostly procrastinating.

I don't have any major questions for him that are specific to me. I did purchase a digital voice recorder based on advice.

Does anyone have any questions they want me to ask him?

Angiotensin II antibodies?

genetic markers for POTS?

Let me know if you have a burning question.

Marti

[tachyfor50years]

Dear martiz,

Good luck with your Dr, is it a follow up or your 1st time?

I don't have any question for him but I have one for you! Do you take your medical records with you? or you just take the most resent ones? because I am travelling pretty soon and I called the office but they were not interested in answering me! they said: whatever you like.

Have a safe trip.

[martiz]

Dear martiz,

Good luck with your Dr, is it a follow up or your 1st time?

I don't have any question for him but I have one for you! Do you take your medical records with you? or you just take the most resent ones? because I am travelling pretty soon and I called the office but they were not interested in answering me! they said: whatever you like.

Have a safe trip.

Hi there,

This is my first visit to Dr. Suleman. I have been diagnosed with POTS by a cardiologist & TTT but she didn't know about medication. Then I saw an autonomic doc who confirmed my diagnosis but wasn't too interested in finding out what is causing my POTS. Looking forward to some answers.

I sent my records in (by mail then most recent bloodwork by fax). Plus, I have my records in a binder that I will take with me. It is organized so I can find results quickly.

Dr. S. also had me fill out an onlline questionnaire. Are you going to see Dr. Suleman or another doc?

Thanks for the good wishes.

Marti

[ramakentesh]

Most treating doctors dont go into causal details or etiologies and if they do its premature given the state of current research.

Responses to treatments are uniformly never uniform in POTS which helps to confuse things.

No research has ever implicated angiotensin II autoantibodies to POTS - ANG II elevations have been seen in a subset of POTS patients so if you could talk your doc into an ANG ii essay that might be helpful.

As for genetic markers - there arent any other than perhaps ace2.

[tachyfor50years]

Dear Marti,

Thanks for your reply.

No, I will be seeing a Dr. in California.

Please let us know and update us about your appointment, hope it will be fruitful.

[janiedelite]

When I first came down with POTS, my goal was to find out if there was anything causing it. I don't know if he investigates for the common underlying causes of autonomic dysfunction, but it may be worthwhile to ask.

Have a great appointment!

[roxie]

Good luck marti, let us know how it goes!

Thankful, I've been to dr s and finding the cause seems to be what he's interested in!

[tachyfor50years]

i hate bananas,

Could you please tell me how he found the cause in your case? I want to know what tests did he order? (if you don't mind)

Thanks

[roxie]

I went to him already knowing I had POTS. One of the first questions was "has anyone tried to find the cause of your POTS"

I said not really so he wanted to go through the circumstances of how I got sick.   

He asked as a bunch of questions, did a basic exam, and then went into what he thought from my history and exam was the cause.   In my case he said he thought it was EDS given my history, timeline of illness, and flexibility.  He said I'd have to see a geneticist to be sure and he'd like to do baseline testing. 

I think he did 20 tests. I don't remember them off the top of my head.  There was a TTT with transcranial doppler, nerve/autonomic  tests, seizure tests, gastric emptying, metabolic stress test, a bunch of heart tests, and 12 vials of blood work. 

When all of those were done he told me my results and that he still felt the cause was EDS and referred me to a geneticist. He also gave me a treatment plan according to my results.  He's the most thorough dr I have seen when it comes to testing.

[martiz]

I had three tests today and more through Thursday. Then my final appt with Dr. S. at 1pm on Thursday for results.

This is the list of tests. I came in to his office with a POTS diagnosis and confirmation (2 separate TTT's). He is not sure that I have POTS but one thing he is certain - it's not the only thing going on. I have a Beighton score of 4. Not sure what that means-I guess hypermobility or EDS. Not sure.

He is definitely all about finding the cause - which is why I cancelled my Levine appt. Very nice staff.

Marti

Metabolic Stress Test

Balance Test

VNG - for dizziness - Visual Nystagmus Graphing? Not sure. I haven't researched these yet.

Tilt c TCD/PCO2

Ansar

PFO

SA

Echo

Stress Echo

QSweat

QST

Hokanson

Gastric Emptying test

Holter

ABM

Loop

EEG

NCV

Carotid

TCD

AAA

Segmental Pressures

[martiz]

Forgot to add - long intake appt. - went back to childhood issues. Very patient doc. SUCH A GOOD LISTENER!

Doubtful that I'll have bloodwork as I had a complete endocrine workup in mid-Feb.

Marti

[martiz]

forgot to add...

I had no time ask my questions - hopefully I will have time to ask on Thursday.

I wrote them down - thanks everyone!

Marti

[corina]

thanks for sharing and good luck marti, hope you'll find your answers!

[sue1234]

Definitely waiting to hear what you find out. Interesting that he thinks you might not have POTS. Is it that you might have another type of dysautonomia? Or, not that at all, but some other issue? Good luck through your next few days!

[roxie]

Good luck, marti! Let us know what you find out. I'm interested in what it could be if it's not POTS either.

Oh and the Beighton test- anything over a 4 is considered signifcant

[sue1234]

I had my limber daughter do the things that I found on the internet that show how to judge points for the Beighton scale. She scored a 7!! She doesn't have any issues, yet. Does a high score imply EDS? Any need in her being evaluated for EDS if she has no health issues?

[roxie]

Sue, from what I understand (and I'm new to EDS) is that you CAN be hypermobile without EDS. You can even be hypermobile and never have any problems. So it'd be a personal choice.

When I was diagnosed I got Dr Tinkle's book and from reading that I found I have many more signs and complications than I had realized. If it's somethig you wonder about you could look at his book and see if it points towards it or not

[sue1234]

Martiz, I hope you were safe while in Dallas today!

[martiz]

Definitely waiting to hear what you find out. Interesting that he thinks you might not have POTS. Is it that you might have another type of dysautonomia? Or, not that at all, but some other issue? Good luck through your next few days!

I think he thinks that it may be POTS but there are some things that I do that don't relate to POTS. So, he is thinking some form of dysautonomia or POTS and something else. He won't say till Thursday (well, I saw him for one test but no office visit - he just did the Patent Foramen Ovale test).

He did say I am on the cusp of hypermobility but he did not say "EDS".

Tomorrow should be a little easier. I hope!

I was so tired that I didn't even care about the tornados!

Marti

[roxie]

I wondered how they made out with the storms up there. At least you weren't evacuated.

Hang in there Marti!

[martiz]

I thought I would write out the test names and what they did before I forget:

Metabolic Stress Test - Consisted of 3 breathing tests - 1. sitting and breathing into a tube - slow and deep 2. sitting and breathing into a tube - fast (as in hyperventilating) 3. on exercise bike, breathing into tube for a number of minutes based on my age, weight and height. exertion level increases as test progresses. This is where they tested me for VO2 Max which is used as upper threshold for exercise to reduce post extertional malaise. I have been wanting this test for 3 years (the VO2 max part).

Balance Test- done in 4 parts - first on hard surface (eyes open then closed) then on foam (eyes open then closed). Feet are placed in slightly pigeon-toed stance.

Videonystagmography (VNG) - for dizziness - see this site for info - I had the 4 parts that are mentioned here:

http://www.stopdizziness.com/services_vng.asp

Tilt c TCD/PCO2 - TCD - I think this is Transcranial Doppler - measures mean blood flow velocity (mV) during head-upright tilt - testing of cerebral autoregulation. I wore a headdband with an ultrasound piece on my temple. This was connected to a laptop and I could hear the swishing sound of my HR. Before the tilt, I breathed into a tube. PCO2 is either pulmonary CO2 or perfusion CO2. Not sure. These two were done together.

Ansar - some sort of valsalva maneuver. can't remember!

PFO - Patent Foramen Ovale- With Transcranial Doppler setup, doc injected some medication/saline/something into an IV and I took a deep breath, held it and bore down. He did it twice and said I do not have a hole in my heart.

SA - who knows! I will ask tomorrow.

Echo - done supine as baseline then...

Stress Echo - after baseline echo and blood pressure readings, I walked slowly on a treadmilll, increasing in effort until my heart rate was over 145 (which didn't take long) then laying down quickly and tech taking more echo 'pics'. They were surprised at how quickly my HR increased and decreased. Then more pics while supine. This is in the midst of the tornado drama so it was started and stopped but we got it done.

QSweat - electrodes, sweat collectors, some medication - on for some minutes then off. did 4 places on my left side (forearm, 2 on leg and foot)

QST - not sure. tests started to merge.

Hokanson - Tornado drama, power outage, etc - this is pushed off till tomorrow.

Gastric Emptying test - drank sip of OJ then small amount of OJ with radioactive isotope. Machine was over my abdomen while the tech and I chatted. Did not do the solid food part. Not sure why.

Hope this helps someone.

Marti

These are tomorrow.and Thursday:

Holter

ABM

Loop

EEG

NCV

Carotid

TCD

AAA

Segmental Pressures

[martiz]

I think he thinks that it may be POTS but there are some things that I do that don't relate to POTS. So, he is thinking some form of dysautonomia or POTS and something else.

Okay, doing some research and I recognize one phrase: Cardiovascular Autonomic Neuropathy. I have had two EMG's - one showed a little something on left side in legs, nothing on right side, legs and nothing in hands, forearms. Two years later, a little bigger something on right leg, several more on left leg and nothing in hands or arms. It was in discussing this that he said I need to have a new EMG done to see if it's progressive and that's when he said Cardiovascular Autonomic Neuropathy. I am not sure if I am having this done while I am here or when I get home.

He didn't let me record and I was holding a blanket around my body while standing to see my feet turn colors (after the physical exam) so I wasn't able to write anything down.

I feel like I am getting a Mayo or Vandy workup! Those who have been can let me know if this workup is similar.

Sorry for the piecemeal posts - I am so tired and my brain is firing in short bursts! I guess I should have brought my son but I didn't want to pay for his food!

Marti

[martiz]

He asked me what my top three symptoms I would want to get rid of and I wanted to say:

1. Fatigue

2. Fatigue

3. Fatigue

but instead said

1. Fatigue

2. Dizziness

3. Nausea

He said Dizziness and nausea should be easy to take care of once we find the source but fatigue will require many things to fall into place correctly in order to improve.

[heathmcev]

Wow. This is all fascinating Marti - what a work up you're getting. You must be exhausted! Hang I there.

dizzyde

(null)

[Chaos]

Thanks for posting all this. I've wanted to know where they did the transcranial dopplers and metabolic stress test so appreciate the info.

Please keep us posted1