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

[martiz]

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

4/4/12 - Added a few more. Results tomorrow at one then finally going home. I really should have brought someone. I am on my last bit of reserves.

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.stopdizzi...ervices_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 - still 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 - This test was three parts. The first part was letting tech know if I could feel the vibration from small box with a little clapper that rested on my big toe. I was to hit a button for yes an a different button for no. Second part was box with an air hole strapped to my foot. First it was cold air then hot and I was to hit a button for yes if I could feel the air then no if I could not feel it. The next part was pain using hot air from the second part but this time I was to rate the heat based on scale of 1 to 5. The test stops when it is just too hot to tolerate.

Hokanson - Tornado drama, power outage, etc - this is pushed off till tomorrow. - Didn't get done today either. Staff was busy with rescheduled appts. Little disappointed.

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.

Holter - 24 hour

ABM - Automatic Blood pressure monitor. I am wearing a cuff that activates every hour.

Loop - 30 days starting tomorrow when staff takes Holter/ABM off

EEG - Some baseline tests-then 1 hour EEG.

NCV - Nerve Conduction Test - not with needles like EMG which tests for peripheral neuropathy. This was done with electrical current and checks for autonomic neuropathy.

These are tomorrow. Can't wait to be done.

Carotid

TCD

AAA

Segmental Pressures

[tachyfor50years]

Thanks for all your updates, please keep us posted.

Wishing you all the best.

[martiz]

Thanks for all the good wishes and encouragement. It was a difficult trip and I should have waited and taken my son. The next trip should be easy alone (but I'm taking my son!). Oh, well. I am taking my son and my mom so they can be checked out too.

My results:

1. Doc is still not convinced I have POTS. My TTT with him was normal. (Unfortunately, I was wired and exhausted and could not fall asleep Monday night so I took a Klonipin at around 3:30am. And the room the TTT was done was freezing. I think these two things (plus perhaps excess adrenaline from the trip) caused me to handle the TTT better. I was in agony and was in tears after the test was over but I didn't have the POTS symptoms) Doc doesn't think the klonipin would be enough to throw the TTT off. He thought perhaps he caught me on a good day. He knows I have some form of orthostatic intolerance but doesn't feel that it is necessarily POTS. He is going to do more testing once my biggest issue is under control (which is not dysautonomia). He has prescribed midodrine as a therapeutic trial. If I have 30% improvement, he will still not be convinced it's POTS. If it is an 80% improvement, then he is happy to eat his hat and agree that it is POTS. I have several things going on that it is confusing the POTS issue. No Florinef or any other medications so we can determine how the midodrine trial goes. Later, once we determine the form of orthostatic intolerance, we will do bloodwork, discuss an exercise program and biofeedback. Also add lifestyle changes, salt, water, florinef,, etc.

2. I have EDS and he wants me to see a geneticist at Baylor. Complete surprise!

3. I have gastroparesis. He doesn't want me to do anything about this yet as we are doing a midodrine trial so no new meds for now. He does want me to google gastroparesis diet and follow that.

4. The whopper: I flunked all of the balance tests. One of them, I flunked so badly, you can't get any worse. He said I have the balance of a 90 year old woman. This has nothing to do with dysautonomia. I am to see a neuro-Otolaryngologist - a balance/vestibular specialist. Until then, to get a jump start, I am to get an MRI of my brain to check for any possible causes and also check for Chiari malformation. He wants me to go ahead and get started with Vestibular Rehabilitation Therapy. This might be related to EDS but it's not related to POTS.

5. Second whopper but not sure if this is related to number 4 or if it's related to dysautonomia - The blood flow to my brain should be the same whether supine or standing. My blood flow rate is 49 and this should be the same laying, sitting, or standing. Within 2 minutes, it drops from 49 to 26 then in 30 minutes it drops to 20. Five minutes after being laid back, it climbed to 26. I don't know how long it takes to get back to 49. I can't remember what we're going to do about this - I will have to check my notes.

6. Autonomic tests - mildly abnormal.

All other tests were normal - no heart issues, no hole in my heart, no damaged blood vessels, no carotid artery issues, no aortic artery issues. Functional capacity (capacity to exercise) was normal.

Doc said everyone has been focused on POTS that no one has looked at my dizziness problem. (I was a participant in a research study and the neurologist did a quick evaluation and knew there was a problem and urged me to see a neurologist when I got home. I have been under the care of a neurologist for the past 3 years but she never picked up on any of this. I compensate well, I guess. My balance scores were better with my eyes closed than open but I still failed).

#4 answers the question why I never got better even though I did exercise.

#5 answers the question why I wake up and become alert when I lay down flat (from sitting position) - when I lay down, my brain gets blood flow, therefore, oxygen and glucose.

I am beyond exhausted so I will update the test descriptions in a day or so.

So basically, the reason I had the huge workup was because he thought I had other things going on - either instead of dysautonomia or in addition to dysautonomia (which is what he said the first day). He must have said three times how surprised he was at my balance (or lack thereof!).

He also said his was out of his area but he thought the balance issues could be deconditioning, some brain structure issue, or infection, etc. He didn't want to speculate.

I think I am going to follow up with a neuro to check for parasupranuclear palsy. I have thought that I have similar issues.

I had no time to ask about angiotensin II due to the 2 surprises - this appt would not have been the right place since we are not even in the ballpark at this time. Sorry!

I was too tired to catch all of it - I took furious notes but having trouble reading them!

While the trip was exhausting, it was worth the risk of crashing and relapsing. Dr. S. is humble, a brilliant diagnostiscian, compassionate, and very intelligent. I was already exhausted on Monday from driving there and high on adrenaline and I was jumping around during my history. When he repeated it back to me, it was spot on. He took all the pieces and put them in the right order - the first time around. Nothing slips by him.

Marti

[ramakentesh]

Don't most pots patients have balance problems? I know manybthat have failed various vestibular abd balance tests.

Nearly all pots and sys patients have measurable reductions in brain blood flow.

[tachyfor50years]

Thanks for all the updates.

Have you had any TTT in the past?

Was that negative TTT with him the only standard for not having POTS?

[sue1234]

I was waiting to see what you found out. I have seen Dr. Suleman before, a couple of years ago. He did run alot of tests, although not everything that you had done. However, he did not spend alot of time with me. He almost seemed "distracted" for the two one-on-one visits before and after the testing. He didn't have any insight or answers to my POTS. I cancelled my yearly repeat visit with him as I didn't feel he had thought enough on my situation the first time to warrant another 6 hour one-way trip to Dallas. I tried the beta blocker that he suggested, and weeks later when I emailed to say I felt awful on it, no one got back with me. A week later I called to make sure they had received the email for him to read so I could get a suggestion and they said they had, and still weeks later no one got back with me.

I apparently had a really different experience. I am thrilled that you got such a detailed visit. I got all the expensive testing, but he surely didn't give me any talk of theory of my cause or any theory of all my results. I left with a prescription for a beta blocker and nothing else except a referral to a nutritionist (I have no clue why that popped up!).

[martiz]

Don't most pots patients have balance problems? I know manybthat have failed various vestibular abd balance tests.

Nearly all pots and sys patients have measurable reductions in brain blood flow.

Hi Rama,

I would think so. He seemed to make a big deal about it and that it wasn't related to my POTS. He said that POTS patients are not dizzy/lightheaded while laying down or recumbent and I am (actually, it's worse while supine). Maybe that's the difference?

The reduced blood flow - I can't remember what he said about that or what I'm supposed to do to fix it. He wasn't as surprised by this but I certainly was!

I've got an appt at Baylor with a balance disorder specialist so we'll see what comes of this. They will certainly let me know if it's related to POTS or another issue.

Marti

[martiz]

Thanks for all the updates.

Have you had any TTT in the past?

Was that negative TTT with him the only standard for not having POTS?

Hi there,

This was my third. My first one was by a cardiologist who didn't know how to treat it but she did the TTT and I fainted after nitro. The BP increase was there but it was after the Nitro so that has been discounted by most docs.

The second one was by an autonomic specialist and it was a 10 min test and my BP increase was well over 30bpm and no nitro or other meds to stimulate fainting response.

Dr. S. felt that I didn't have POTS based on the first and third but that the second one did show POTS and he knows the doc that did it. He does think that I have orthostatic intolerance - just not necessarily POTS itself. We may know more when the midodrine trial is over.

Marti

[martiz]

I was waiting to see what you found out. I have seen Dr. Suleman before, a couple of years ago. He did run alot of tests, although not everything that you had done. However, he did not spend alot of time with me. He almost seemed "distracted" for the two one-on-one visits before and after the testing. He didn't have any insight or answers to my POTS. I cancelled my yearly repeat visit with him as I didn't feel he had thought enough on my situation the first time to warrant another 6 hour one-way trip to Dallas. I tried the beta blocker that he suggested, and weeks later when I emailed to say I felt awful on it, no one got back with me. A week later I called to make sure they had received the email for him to read so I could get a suggestion and they said they had, and still weeks later no one got back with me.

I apparently had a really different experience. I am thrilled that you got such a detailed visit. I got all the expensive testing, but he surely didn't give me any talk of theory of my cause or any theory of all my results. I left with a prescription for a beta blocker and nothing else except a referral to a nutritionist (I have no clue why that popped up!).

Hi Sue,

I am sorry that you had a bad experience. I have heard from someone else that they had a similar experience. They attributed it to the timing of the expansion to the McKinney office. I did get the referral to the nutritionist but I just didn't have the money to see him and I was pretty wiped out and couldn't deal with the stress of finding his office and making sure to be back in time for the next test. Also, I really couldn't think straight or listen to instructions so it would have been a waste of money. Maybe if I could have recorded it.

Dr. S. did not let me record so I am only sure of the things I wrote down twice.

I knew I had a neurological problem as I had been told by a neurologist at Georgetown to see someone. I have seen 2 Neuros and did the manual balance tests but no one dug deeper. When you have ME/CFIDS, everything gets attributed to that condition.

Again, I am sorry that you didn't have a better experience.

Marti

[sue1234]

Marti, I also have the balance issue. I saw a neuro-otologist with Baylor a year ago, but no answers there either. Please let us know what you find out.

Yea, I couldn't afford the nutritionist either is more why I didn't see him/her.

[jenglynn]

My balance issues have always been horrible. I once had an assessment done and was told the same exact term, ironically nough, a couple years ago (before I knew I had any autonomic, autoimmune, EDS or anything) that I had the balance of a 90 year old and I should not be walking without a cane. Well, I knew my balance was bad but I wasn't using a cane in my 30's unless I had no choice. It's the same whenever I do those neurological tests.... Touch your finger to your nose.. Eyes open then closed. I can barely do it with my eyes open and usually miss but with my eyes closed I usually hit my forehead. I am definitely positive for POTS bd at ths point am considered in Autonomic Failure- caused by my Autoimune Disease (the sudden increase of severity of autonomic problems).

Interesting, I had always thought those balance and neurological problems were in fact connected to dysautomia of whatver kind. What explanation did he give you for your poor balance?

Sounds like quite the work up! You must be exhausted!!!!!!!!

Jen

[roxie]

Rest up, Marti! I'm glad you're getting some answers. You know, my TTT results there were a little bit better than my previous ones, as well. Dr s looks at it as an improvement.  I feel like to you have to consider the variables- i was on ALL my meds, it was in the afternoon, and for some reason I've felt like my legs were extra tense during it. 

I think you made a good decision skipping the nutritionist. He is very knowledgable but throws a lot of info at you. It made my head spin. 

Sue, I know what you mean about Dr S. I've been seeing him at least once a month since last fall. There are times he's extremely attentive and times he seems distracted and dismissive. He has SO SO much going on that at times it gets the best of him. 

Im sorry you didn't have a better experience. 

I think he sends everyone to the nutritionist. Actually I think he is more than a basic nutritionist! His knowledge amazes me.  

Oh marti, my balance was better with my eyes closed too. But I have strangely good balance they said

[martiz]

JEN: He said he didn't want to speculate. It could be inner ear, deconditioning, active viral infection. I am sure that balance issues are a part of POTS. The part that he said was not connected to POTS was the lightheaded floating feeling when I am recumbent. The room spinning when I lay down or turn my head 70 degrees from my body. Funny, these issues aren't that bad when I am walking. Probably because the visual cues and the touching (somatosensory) - touching walls, furniture, etc throughout the house help that system.

On VNG test - he made a point of stating that he had that sent off to be read by THE top authority for balance (or for that test) so he said that should get me in to see a specialist. He made a point of telling me NOT to say that I have POTS since they will dismiss me. He said I can say that I have EDS as that population have these issues. He made a huge deal to NOT go to a regular ENT as they will give me the runaround as well. That doctor wrote in the comments - Multisensory Deficits. (this test is the one that shows possible brain lesions and their location). Could that be the difference? Has anyone had videonystagmography, VNG or the previous type test - ENG - electronystagmography.

reviewing my two balance tests - I found that I was wrong - my balance is worse with my eyes closed than open. The results are logged on a different scale. My worst score was 4.5 where 4 is falling down and 2.25 is a normal person with good balance.

I also did research on the videonystagmography report and found that my eyes are fine, my inner ear may be causing a problem with my balance but that I have cerebral issues, possibly lesions, hence the MRI of the brain. No surprise there - people with ME/CFIDS have lesions on the brain. I would be expecting that - just never had a doc willing to do the test.

I have also always chosen HMO's and I think that has been a big mistake. Now, I am with a PFFS (like a PPO) and choosing docs who have independent practices so they are governed by medical bean counters.

Anyway, thanks for all the feedback. I was flying higher than a kite thinking that I had some answers when in reality, I don't. I have always know I had a neurological problem, he has confirmed it and is sending me on to other for further testing. Thanks for letting me know that the Balance specialist might not be able to find the source. I needed that reality check. I am hopeful but not blindly hopeful. Does that make sense?

What I have now that I never had before is actual MEASUREABLE TESTS that can be duplicated showing I have a balance problem. I think that is important for credibility and to be seen by a doctor.

I am surprisingly well today and yesterday. Maybe I am still on adrenaline. Taking care of chores and ran to the store. Going to do the same today. Really surprised. I thought I would be crashed (as in bedridden).

[martiz]

Finished the description of tests...

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).

Clinical Test of Sensory Integration of Balance (CSIB) -the 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.stopdizzi...ervices_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.

Ansar - some sort of breathing test while supine. I have forgotten and asked and forgot again.

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 - asked and forgot the answer. sorry..

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 - This test was three parts. The first part was letting tech know if I could feel the vibration from small box with a little clapper that rested on my big toe. I was to hit a button for yes an a different button for no. Second part was box with an air hole strapped to my foot. First it was cold air then hot and I was to hit a button for yes if I could feel the air then no if I could not feel it. The next part was pain using hot air from the second part but this time I was to rate the heat based on scale of 1 to 5. The test stops when it is just too hot to tolerate.

Hokanson - Tornado drama, power outage, etc - this is pushed off till tomorrow. - Didn't get done today either. Staff was busy with rescheduled appts. Little disappointed.

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.

Holter - 24 hour

ABM - Automatic Blood pressure monitor. I am wearing a cuff that activates every hour.

Loop - 30 days starting tomorrow when staff takes Holter/ABM off

EEG - Some baseline tests-then 1 hour EEG.

NCV - Nerve Conduction Test - not with needles like EMG which tests for peripheral neuropathy. This was done with electrical current and checks for autonomic neuropathy.

These are all done together - ultrasound tests.

Carotid

TCD

AAA - Abdominal Aortic Aneurysm

Segmental Pressures - Blood pressure measurements on my legs

Hope this list is helpful to someone.

Marti