doctorguest

Linda, this is appalling, albeit again... not surprising. Do you have a teaching hospital in your area? Usually, that's where complicated patients get more attention and care from residents and clinicians. Many PCPs do not like to deal with unusual and complicated cases because of THEIR lack of knowledge on these diseases and lack of time and desire to learn about these. Most PCPs like simple, standard patients, with hypertension, diabetes, heart disease, etc. This is not an excuse, however, to avoid you as a patient, given that you have specialists working with you. My suggestion is again to find an outpatient clinic, be it internal medicine or family medicine clinic, attached to a teaching hospital/institution in your area because there residents, medical students and teaching attendings usually enjoy a challenging patient and the teaching/learning opportunity that goes along with taking of care of such a patient.

Hi everyone, Like Lukkychrm said, I am officially "embarrassed" by your gratitude . I feel for all of you who have been misdiagnosed or not taken seriously by your doctors. Morgan, you are exactly right in what you wrote. It is not a secret that where you live is a huge factor in the type of medical care you receive. I hope that when you feel stronger, you're able to travel to one of the well-known institutions that are capable of providing diagnosis and treatment, in addition to the validation that you're looking for. As you know, being a nurse or another health care professional can be a "negative" when it comes to getting medical help. It's unfortunate, but sometimes nurses and physicians who are sick and are seeking help from their colleagues are treated with more scrutiny than the general population. Lukkychrm, yes, everything is relative in life - there are many disorders that are worse than POTS, but everyone deserves good care when they're ill, especially when it affects their functionality. What type of diseases get more publicity and funding for research is unfortunately a very political and financial issue. There are less disabling conditions in medicine that get much more attention in education and research, partly because the pharmaceutical companies see an opportunity to cash in on these. I won't go into more details than that... Dawn and LindaJoy, I am glad you found good physicians to work with. Mayo Clinic has only 3 locations around the country, so routine follow-ups on every patient would be difficult, if not impossible, for geographical reasons.

It means you have a confirmed diagnosis of POTS. If your doctors are "puzzled" by the results, please, ask them to look up diagnostic criteria for postural orthostatic tachycardia syndrome (POTS).

Hi everyone, I feel humbled by your appreciation, and I think that I don't really deserve all of the accolades... I see that most of you have had a hard time finding the right doctors who either have the knowledge of autonomic disorders or the willingness to learn how to diagnose and manage these. I am not surprised that most people here have been misdiagnosed with anxiety disorders at some point since many physicians have no knowledge about POTS and other autonomic dysfunctions, some physicians who do know about POTS mistakenly think that it is always associated with anxiety, and yet others feel that if signs/symptoms and diagnostic tests don't fit into a nice category of well-known and widely-used diagnoses that it must be rooted in psychological causes. If you happen to encounter a doctor who does not want to listen to your complaints and concerns, does not know about POTS AND is not willing to learn new information, then my suggestion is to not waste your time, energy and money and find a better doctor. All of you seem very knowledgeable about your condition and motivated to get help, qualities that should be very valuable to your doctors because it helps them help you. Doctorguest

Fatigue can be certainly caused by or exacerbated by a sleep disorder. A consultation with a sleep specialist should be helpful to diagnose and treat a sleep disorder, if it is present. I must say that although insomnia is common in young women and in general population overall, obstructive sleep apnea that requires CPAP is not, assuming that there is no personal history of obesity, lung disease or ENT problems that would create anatomical reasons for obstruction of the nasal or pharyngeal pathways.

Thank you all for your kind words. Schedule permitting, I will try to be helpful to all of you by participating here when I can. As a standard disclaimer, my statements/opinions/advice should never be used as a substitute for a visit and a discussion with your treating physician, who knows you and your case.

This is called "fleeting paresthesia". It's common and has a long list of possible causes, such as vitamin deficiencies, like B12, thyroid disease, changes in blood sugar or electrolyte levels, to name a few. I see you take Prozac, and it may be related as a side effect of this medication. Another reason may be the activation of sensations by the small sensory fibers in the skin - aka small fiber neuropathy, but this is less common. Even things like lack of sleep and too much caffeine can cause this. Ask your doctor if it persists; hope this helps.

Arthritis is not associated with dysautonomia, but fibromyalgia can. If you have pain in the large joints - hips, shoulders, knees - then osteoarthritis may be the cause. If pain is in the small joints (wrists, fingers), other types of arthritis may be the culprit. Ask your doctor to refer you to a rheumatologist; they will know how to diagnose properly and how to manage the problem Good luck!

This is an interesting discussion. Cardiactec, you are obviously an intelligent person who have done very well in terms of functioning with POTS. I am sorry that you went through a bad experience with doctors before getting a proper diagnosis. However, I do think that some of your statements and assumptions about SSRIs and physicians in general, which as you clearly stated are based on the mistreatment by the medical personnel prior to your diagnosis, are misleading to other people who may be struggling to find the right treatment. You stated that if one doesn't have a panic disorder and is prescribed an anti-anxiety medication by a doctor, that it can actually be more harmful than helpful. This is simply not true. As a doctor, I can assure you that SSRIs, as well as other classes of anti-anxiety drugs, are used in many conditions and situations that have nothing to do with anxiety or depression. For example, Cymbalta, an SNRI, has been recently approved by FDA for treatment of diabetic neuropathic pain, a very painful condition caused by diabetes. SSRIs have been used to treat sleep disorders, certain GI problems, headaches, pain conditions and autonomic dysfunction. Thus, panic disorder is just one of the few conditions where SSRIs are utilized. Can they be harmful? Like other medications, these have their own side effect profile, but if prescribed by a doctor who understands how these medications work, no danger should come from a trial of SSRIs. As for the stigma attached with the use of SSRIs or counseling from a psychologist, well, this is where everyone, doctors and patients, should do their part in NOT perpetuating it further than it already exists. Not all doctors are judgemental when they see an SSRI on your medication list. In fact, it has become so widely used for various conditions that many doctors do not automatically assume that you're anxious or depressed when they see it as part of your medical record. Speaking of the medical record, I think that you may be too concerned about what's written in your medical record. It sounds like you found good doctors to work with now, so why is it so important to hide the fact that you're seeing a counselor to help you deal with a chronic illness?! I think by suggesting that this information be hidden from your record, your PCP had actually perpetuated the problem of stigma associated with psychiatric disease, not to mention heightened your own fears of being stigmatized. Knowledgeable and caring doctors will not jump to a conclusion that you're anxious just because they read that you're taking an SSRI or seeing a counselor in your medical record. They will ask questions and try to understand your situation objectively. If this is not the case, then change doctors until you find a good one. Conversely, if you're seeing an arrogant doctor who doesn't care, they can still think that you're anxious despite your record mentioning no SSRI or counseling, so really it doesn't matter what your record states either way. Starting or abstaining from SSRIs is a personal choice that you can discuss with your doctor, but refusing to try a medication that has potential benefits on the premise of false assumptions, fears of societal views, or simply being misinformed can be detrimental. Modern medicine and patient education have come too far to afford negativity and dismiss a potentially effective, multi-purpose drug because it happens to be also used in psychiatry.