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martiz

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Everything posted by martiz

  1. Hi Lauren, I also have ME/CFIDS and POTS. I am at the beginning of my POTS treatment so I can't give you much input. I have been on Florinef for two years (not on it now) and I never noticed any bad side effects. It only worked if I increased my salt and fluids but no headaches. I have tried mestinon but couldn't tolerate that much. Tried metropolol and that one was terrible but I have low blood pressure and I was on too high a dose. The med I am on now is midodrine to increase blood pressure. Early days as you have to ramp up. I also am being sent for an MRI to check for Chiari Malformation and I have been researching recently that this is best done vertically or weight-bearing rather than lying down. I hate to mention it since it would require some phone calls to ask if this can be done but since you are doing it anyway, it might be best to do the right kind of MRI. Especially since you have migraines. I don't think they are located everywhere - just thought I would throw this out as Chiari is sometimes misdiagnosed as CFS or POTS. I don't want to add stress but thought I would throw it out there. http://en.wikipedia.org/wiki/Chiari_malformation http://www.chiarione.org/chiari.html http://www.huliq.com/56092/fonar-upright-multiposition-mri-beneficial-evaluating-chiari-malformation Maybe I will ask the group here what they think of this idea. Marti
  2. The last part of your sentence made me laugh - you're right, most docs are not diagnosticians! I see an integrative doc (a couple). They are open to alternative medicine (not incense and weird stuff) - there are a slew of tests that are not covered by insurance (unfortunately) but are very telling. They also do mainstream medicine. Google integrative doc or find a compounding pharmacy and ask them who in the area is an integrative doctor. They are getting easier to find but you still have to look. You will not find them in big HMO type medical chains like Kelsey-Seybold or Sadler Clinic (don't know any other big chains). They usually are in private practice or hooked up with one or two other docs. A good health food store might be another place to find some names then you can research them. Marti
  3. Hi Chaos, I used to live in Mesa for a short while. Loved it there but didn't stay through the summer. 8 hours is a long way to see a doctor. Funny thing is that when I tell people, they all know the exact spot - it is famous (but no one thought to remind me!) I actually wasn't intentionally speeding - I thought it was 60 instead of 65 but I was looking at my Mapquest directions and my foot got heavier. Without realizing it, I was going 80! I am going to try to do a driving course but I still have to pay for that! Oh, well! Marti
  4. Hi Chaos, I cancelled the appt. I am broke from my trip to Dallas (and the speeding ticket!). I have just enough for the copay and gas to see the balance disorder specialist. (I even had to cancel the MRI). I am taking a baby aspirin twice a day until I see the specialist. Hopefully, he can check it for me. It's a risk but I don't have a choice. If it happens again, I will borrow money from my mom but at 50 that gets old! Thanks for asking, Marti
  5. This is a difficult balance to achieve. You may get it right some days and other days you may not. If not, then start again tomorrow. Personally, being as active as possible is great physically and mentally. Being embarrassed to use walking aids is fine but if it means you are sitting at home alone, then its not fine. If using walking aids gets you out and about living life, then do it! I would rather use walking aids while out and about even if it meant sitting in a wheelchair the whole time I was out. And my exercise time as a concentrated, controlled-environment activity with everything I need to remain safe. You can do both - it doesn't have to be one or the other. Using aids while out and with friends means you can stay out longer, can participate more fully, means you don't crash when you get home or the next day. It can lift your spirits and helps to motivate you to exercise at home or at the gym. Win-win! Jen - unfortunately, we are all different and the issues facing puppylove and lemons is not the same as the issues you are facing. Push and strive in the amount that is right for you. Don't take someone else's "push through" attitude and apply it to your body. Head concussions are a serious thing. Lack of oxygen to the brain is a serious thing. I don't know what the answer is for you - it may take a while to find the answer. I know you know all of this and I wish I could help you. I hope and pray that you will find some answers on Thursday. Hang in there! Marti
  6. I sleep in a tempurpedic bed with head and feet elevated. Before that, I slept in a hospital bed. Before that, tons of pillows. I get the same symptoms as you regarding laying on belly. interesting, Marti
  7. Thanks Sue, I will make an appt. I didn't want to spend any more money this month! Thanks again, Marti
  8. Hi Naomi, I am glad she was honest with you. I have gotten the most help from docs doing research. I have gotten the most testing, the most orderly approach. I think that's a good thing for you. In January, I switched my Medicare plan which forced a drug plan switch as well. So, the Valtrex generic, valacyclovir, was switched to a different generic brand. Well, there are 21 or so generic valacyclovir manufacturers and the one I got switched to used a different formula that did not contain all of the chemicals to keep the medication in suspension in my body. So, it passed through my systems quickly and I had about 20% effectiveness. This meant that my viruses (the ones kept in check by this particular anti-viral) replicated out of control and I was very sick - sore throat, swollen glands, feverish (but not really), It wasn't until I did some research and found that 3 of the 21 manufacturers do not use the suspension agents. Once the pharmacist ordered the right generic Valtrex, I was fine within three days. I had been on the ineffective Valtrex for a month and a half. But while I was sick, my OI was worse than ever and my head felt more 'swollen' than before. Like when a low pressure system moves in but a little bit worse. I have some famvir but never tried it. I hope it goes well for you. Marti
  9. Hi group, I was resting, recumbent, watching a movie when I had a dizzy spell and closed my eyes for a minute. When I opened them, the top half of my right eye was black - like a curtain had fallen. I could see below the curtain but not through the curtain of black. I just started midodrine (2.5 mg in morning). Today was my fourth day. Googling side effects, I see that vision field changes and dizziness can be a problem. When I google "vision went black", I read about all sorts of scary scenarios. My eyeball is tender but there is and was no pain. I still feel lightheaded but dizziness lasted only seconds and black curtain maybe 2 minutes. Any thoughts? Many thanks Marti
  10. Hi Monstrosity, I just got diagnosed with EDS but had absolutely no idea. I checked myself for this condition but didn't think I had it. I would keep checking until you get a no from a credible source. Trish: I have made an appt with Dr. Dhar but it is not until JULY! Yikes! I hope it's not always that hard to get in to see her. Will I be seeing her often as an EDS patient? The receptionist gave me a hard time about being diagnosed and the tests that I have had but Dr. S. didn't really run any tests - just a physical exam. I am concerned that I will wait until July and then they will tell me I need to see another doctor first for referral. Any thoughts? Marti
  11. 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
  12. Hi Rama, I was on it for a little over 2 years at 0.1 dose once a day. I quit cold turkey and suffered no ill effects. I did feel better on it as long as I kept my salt intake consistent. Increased fluids has never been a problem but my stomach was getting tender from the salt so I decided to give my body a rest. I don't have a problem getting back on but I have read that it interferes with the thyroid gland. I have also read that that some of the halides are not healthy so I have thought about using licorice root instead. I have used it in the past and did not feel any side effects. Marti
  13. Glad you went and had fun! I have a walker that has a seat - it is useful for carting everyone's junk then if I need to sit down, everyone grabs their bag and I can sit. If I'm really bad, my son will push me (not advised but we're careful). If I'm okay but a little tired, then I will push it (my balance is bad). If I'm feeling good, then someone in the group will push it (kids love these things). For quickie trips, I use a seat cane. When I get where I'm going, I just sit down. Everyone who sees it love it - I should buy stock in the company. I bought it for $18 at a sports store. It's for golf spectators. I also bought a little scooter which I have used on trips and I love it! Went on my first weekend vacation in 10 years with it. There was only one area that was not accessible and then my son carried it! It breaks down in four pieces and fits in the trunk. Everyone I am with loves it as they can hang their stuff off the back. I know you are young and may be embarrassed to use these aids. I was at first - when I first used a grocery store wheelchair cart, I wrapped my foot in an ACE bandage. That was ten years ago. Now, I use them always -even if I feel good - because with the post exertional malaise, I may be able to get the groceries but won't have the energy to drive home safely or put groceries away. Then forget about cooking dinner or any other tasks! Using these aids gets me out of the house which is good for me all around. Glad you had fun!
  14. The farmers in Texas use Yellow #5 as a fly repellent/killer. They get big drums of it and spray it from tractors. When the sun hits the dye, it changes it and flies die when they land on it. A friend of mine raises cattle. If you google the Feingold Association - they have done research on dyes and the effects on autistic children. Don't buy the book - too expensive and basically, the advice is "stay away from dyes" - especially the red and yellow. I bought the book but was disappointed. And my son and I have other restrictions that we couldn't follow their buying guides. This was a few years ago when we were on the road to whole food. But their website might give you more insight. Congrats on finding a trigger! This can be life changing. Every little improvement adds up to a better life. Marti
  15. Hi Naomi, This is a common infection in the ME/CFIDS population. When your immune system is taxed with the initial infection, then you are susceptible to any other that cross your path. I have tested positive for this one too. I have not gone the route of antibiotics. Too afraid to permanently destroy my gut bacteria. I work so hard to keep it going and struggle to do so - I don't think my body could recover from long term antibiotics. I am sure you will do some research as this is an old topic in the ME/CFIDS world and many people have gone down the path of long term antibiotics - not just for lyme but myco p. as well. Check out their success rates and their technique (pulsing and alternating antibiotics) and then you can weigh your risk. My goal is to somehow improve my immune system and let it take care of all of the infections. Hasn't happened yet but I still have some things to try. I think you will find that after long term antibiotics, the infection came back for some people but worse because of the gut bacteria being wiped out. I can't remember if myco pn. hibernates in cysts - if so, then this may not be the best route. I do take anti-virals for the EBV, HSV and Varicella Zoster. This doesn't affect the gut bacteria. It can do damage to your liver which I get checked but not as much as in the beginning. I have been on Valtrex for years and have been okay. I couldn't live without it. My OI is so much worse with active infection - recently had the generic switched and I truly felt the infection was in my brain.
  16. 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).
  17. Yes, I have tested positive. I don't know what the symptoms are - everything sort of melds together. I have not gone for treatment or confirmation testing (by biopsy). Marti
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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.
  23. 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
  24. 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
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