doctorguest

Hi Angela, My personal opinion is that you should have an EP study done - mainly for your peace of mind. Find a good EP specialist who wants to do it and have it done. I usually follow a conservative approach in many things, but I think in your case, it may be reasonable to be more aggressive in order to put your and other cardiologists' concerns about possibly "fixable" cardiac arrhythmias to rest. Otherwise, I think you will always question your diagnosis in the back of your mind. By the way, Mayo Rochester cardiology department is considered one of the very best in the country, but... it also depends who in particular you saw and what their reasons were at that time behind reluctance to proceed with an EP study. Finally, I agree with Nina about staying private about your medical condition with respect to the information provided to your co-workers. Believe me when I say that I know how "inquizitive" and "assertive" health care personnel can be - everyone wants to know everyone else's business. It is probably best to give away as little information as you can when you're directly asked about your condition. I think it would be fine to say that because of a medical condition, you cannot scrub in, and leave it at that. This way you control the conversation and not those who are asking too many questions.

Hi Nina, Have you had basic lab tests done recently, like an electrolyte panel, thyroid function tests, and serum vitamin B12 level? In a young person, such as yourself , cognitive complaints are likely to be secondary to metabolic/hormonal abnormalities and not a primary memory disorder, i.e. Alzheimer's. A second possibility is the medication side effects. From your signature list, I see a few medications that can cause memory disturbance. One known culprit is Benadryl - that's a common one if taken continuously for prolonged periods of time. Cyclobenzaprine is another one that can cause memory problems. If you're taking any other pain medications on a regular basis, which I think you are, some of those may have the same effect. I doubt that you have a seizure disorder, so EEG most likely would be normal for you. Neuropsychometric testing is a good idea to get, although prepare to be tested for 6 hours! Finally, another cause may be a sleep disorder. What are your sleep patterns? Chronic insomnia or obstructive sleep apnea can cause a wide range of problems during the daytime, including memory impairment. Well, I hope I gave you some "food for thought." I am sure your neurologist is already exploring these possibilities.

Sheridan, Actually, you don't even need to get the IM shots, as recent literature suggests that even when there is an abnormal function of the GI system (i.e. gastroparesis, pernicious anemia, etc. ), oral vitamin B12 taken as 1 mg daily is just as effective as IM or IV to increase serum vitamin B12 level to the normal range. I tried it on myself, when my B12 level was 133. I started taking oral tablets, which are not big at all, daily and within 3-4 weeks, my level increased to 500. Regarding your symptoms as possibly caused by B12 deficiency, I unfortunately doubt that all of your symptoms are related to B12 deficiency. Perhaps muscle twitching and numbness would resolve, but please keep me posted if indeed all of your symptoms either improve or completely disappear as a result of correcting B12 deficiency.

If your thyroid was found to be enlarged on MRI, you need to ask your doctor to order an ultrasound of the thyroid gland. Sometimes, there can be nodules in the thyroid gland causing an enlargement, without the actual change in thyroid hormone levels. This has to be evaluated further to know whether it is a clinically significant finding.

Unfortunately, there hasn't been anything new. Even more unfortunate is that until and unless the pharmaceutical companies take interest in the autonomic disorders, new medications are unlikely to be developed in the near future. Perhaps new agents may come out from research on either diabetes-related autonomic dysfunction (as it is much more prevalent and receives great funding and attention from scientists and public) or research related to space and orthostatic intolerance in astronauts returning to earth.

Dari, I am glad this information was helpful to you, and I hope your doctors find it helpful as well. Mrs. Burschman, no, anxiety does not cause a positive TTT - there are research studies to support this. Anxiety can happen to both non-POTS and POTS patients before or during the TTT, but the pattern that's due to anxiety is very much different than the one due to an autonomic disorder. A physician knowledgeable in TTT interpretation should easily separate the two patterns - even if the two take place concurrently - and arrive at a correct diagnosis.

If you have warning signs before the syncope, you should not lose your driving license. Results of tilt table test should have no merit on driving license. For seizures, most sates require that you be seizure-free for at least 6 months before resuming driving. However, as someone pointed out, a physician is not legally obligated to notify the authorities that you're driving against their advice. A doctor can urge you not to drive if you have seizures, and they can document that in your chart. If you get into an accident due to a seizure disorder, and if the authorities obtain your medical record where it was clearly stated that you should not be driving, then you would be responsible for the accident, not your physician.

If your main symptom is tachycardia, while blood pressure is relatively stable - by stable, I mean it's not 80/50 - then a trial of another beta-blocker, like propranolol, may help. If your main symptom is drop in blood pressure on standing, then midodrine may be the way to go. However, many patients need a combination of a beta-blocker and another agent. If atenolol doesn't help your symtpoms, there is no point in taking in it. On the other hand, it doesn't mean that the entire class of beta blockers should be discounted. Your doctor and you should decide what the next step should be.

What do you mean by "dizziness"? Is it a sensation of "things spinning around you"? Do you feel like you are are "sea-sick" or like you are on an "amusement park ride"? Or is it a sensation of lightheadedness, like you're going to pass out? Do you easily get car-sick? Do you have migraines? Do you sometimes get "dizzy" when you turn in bed? Lots of questions, I know, but what you describe may in fact be caused by Benign Positional Vertigo (BPPV), which incudes feeling vertigo precipiated by various positions of the head. Even if you don't have BPPV, you may have a dysfunction of the vesitubular system, which is quite common in patients with autonomic disorders. Ask your doctor to refer you to ENT - they can check you for BPPV and other vestibular conditions.

We do not measure total body water in US either, as frankly there is no test that can give you a total body water level. I am not sure how these scales work, but I assume that if it was a reliable test, it would be widely used in medicine. As Flop said, I would not try to interpret these numbers - rather, go by your symptoms and physicial signs - like how concentrated or diluted your urine is.

First of all, did you have a tilt table test and did it confirm POTS? That's important in trying to decipher the cause of symptoms. Secondly, the relationship between POTS and anxiety is complicated for several reasons, one being that "physical anxiety" can be a manifestation of POTS - in the same way as anxiety can be a symptom of hyperthyroidism. What you describe with your heart rate is suggestive of autonomic dysfunction rather than an anxiety disorder. Regarding personality traits - shyness, anxiousness, etc. - I honestly do not support the hypothesis that an autonomic dysfunction is somehow connected with who you are as a person. I would say absolutely not to that. Medicine has been down that road before with multiple sclerosis, when women were presenting with various neurologic complaints that were not supported by the "objective evidence" that doctors had in their arsenal in those years (MRI, etc.). Most of these women were deemed "hysterical" - i.e. suffering from a psychological disorder. Obviously, today we know that MS has nothing to do with any of that. I feel that the same is true for the autonomic disorders. When patients have multiple complaints, feel sick and cannot function, and physicians have no plausible explanation, everyone is too quick to jump to the "psychological causes". Perhaps women with MVP have a higher risk of anxiety disorders, but I would not apply that to POTS, NCS or other forms of the autonomic dyfucntion. In addition, there have been no studies supporting a hypothesis that anxiety disorders (different that "just" anxiety, which as I said before, can be a manifestation of many medical disorders) is more prevalent in those with autonomic dysfunction.

OK, sorry to sway off topic. Good luck finding a good doctor, Nolie!

Thanks for the info, Lois. I guess things are changing to how it was in the past. When I started medical school (x number of years ago ), we were told that those who chose medicine for the money, should go to business school. lol - it's true, unless you're in surgical subspecialties, radiology or dermatology. Or dentistry - it's just unbelievable to me that most dentists work less than 4 days a week, do not take insurance, and charge literally an arm and a leg for procedures that take 20-30 minutes. Their offices are beautiful, and they are usually a happy bunch because their stress level is minimal compared to physicians'. In my area dentists are completely out of line, probably because they make so much, they don't care if they loose a potential patient. I had one endodontist call me on my cell phone once to tell me that he will never see me, even if I need to be seen, because I had to cancel an appointment with him twice due to my own work schedule. I didn't just skip the appointments, I called in advance to cancel so that he could fill with other patients. I was shocked when his office called me and rudely said not to ever come to their office, and this was from a highly recommended dentist.

Thanks, Nina and Melissa for the info. I am aware that Lyme doctors and some CFS doctors do not take insurance, but I haven't heard too many "regular" physicians doing so, although I completely understand their decision. As Nina said, insurance pays very little for a visit of a patient who may take an hour or more to evaluate if they have complicated medical problems, like the autonomic disorders. This is partly why many physicians do not want or can't afford to see patients with dysautonomia. Obviously, this is not an excuse, but in reality this is what happens. Having consulted and followed patients with a wide range of medical problems, those with autonomic disorders and pain syndromes by far are the most time-consuming, not to mention challenging to manage.

Lois, Just out of curiosity, is your doctor an internal medicine physician or a subspecialist? Does she practice out of her own office or within a group of doctors? It is rare these days that a doctor does not accept any insurance. That's how it was in the "olden days". Interesting...

If your PCP is testing you for tick-related disorders, ask to be seen by an infectious disease specialist. Often, they are the specialists who can correctly test and interpret a plethora of tick-related illnesses, not just Lyme disease.

If you live in Northern Florida, you should go to Mayo Clinic in Jacksonville and ask to be seen by a neuromuscular specialist. They would do an EMG and give you a correct diagnosis.

When you said that there was something on EMG that the doctors couldn't explain, you confirmed my suspicion for a neuromuscular disorder. Obviously, I cannot diagnose by internet, but I do think that your problem is likely secondary to nerve or muscle disorders. Since it sounds like you are in Arizona, I suggest you get a referral from your primary doctor to go to Mayo Clinic in Scottsdale. EMG is a very tricky test and depends on the skills and knowledge of physicians performing and interpreting it. I suspect that the answers will come from EMG results. The drawing of your arm is called dystonia, which may be a feature of the underlining and yet undiagnosed neuromuscular disorder. Good luck with your evaluation! POTS is not the cause of symptoms that you describe.

I am assuming that MRI of the brain and cervical spine were normal, correct? Have you had EMG at an academic facility? You may have a neuromuscular disorder that would result in weakness and muscle waisting. In addition, if your arm "draws" at the elbow, do you mean that it assumes a position that is not under your volunatry control? Is it painful? Does it feel like a spasm? Is your autonomic specialist a neurologist or a cardiologist? You really need to see a good neurologist at an academic center with these symtpoms.

Linda, a level of 269 is not an abnornal result, although it's on a low side of normal levels, and by no means would be the cause of your neuropathy. You do not need to follow this up with a methymalonic acid because this is not an abnormal result. There are many causes why a vitamin B12 level can vary within the wide range of normal values, but the important point is to take a vitamin B12 supplement. You can ask your doctor about that. Furthermore, recent studies have shown that even in patients with pernicious anemia - a condition where the stomach does not produce the intrinsic factor need for B12 absorption, oral doses of B12 are still adequate for to increase serum B12 levels. Thus, B12 IV shots are not necessary to increase your serum B12 to higher levels, even if your GI system is not working properly, because oral doses are sufficient.

Please, provide details as to what you mean by "paralysis". Do you have weakness on that side? Is it constant, or does it come and go? Have you been evaluated by a physician and what were the outcomes of the evaluation?

Nina, thank you for sharing this information. It's interesting to see how far we've come in genetic testing and diagnosis, yet how far behind we still are on treatment of many conditions that we are able to diagnose. I am glad you have top specialists working with you, and I hope you get a proper diagnosis soon.

What was your heart rate before and after you were tilted? If it was 30 points less, this would qualify as POTS, if you also had symptoms during the tilt.

Nina, I was just wondering what led you to seek re-evaluation from the geneticists? And what in your medical history suggested that you may have this genetic disorder? Regarding memory and concentration issues, one possibility that comes to mind - that may or may not play into this - is the fact that you recently had 2 major surgeries, which were probably done under general anesthesia. Sometimes general anesthesia can result in temporary memory difficulties, which usually resolve with time.

Flop, I am going to be blunt here, but I think your cardiologist who thinks that you could not improve your orthostatic tolerance unless and until you purposefully faint, is ignorant. The idea of syncope treatment is to prevent syncope, not to make it happen voluntarily by standing until you faint. The doctor clearly does not understand the autonomic nervous system or the management of patients with these disorders. You are wise not to follow his advice. Like others suggested, it may be beneficial to gradually increase standing time through graded exercise program and increasing physical activity as tolerated. I am not sure that standing passively against a wall is beneficial for the majority of patients with POTS. I believe that exercise is more effective than just standing because it builds up muscles, especially in the legs, and improves cardiovascular function; both are helpful in patients with POTS.