Yes, without a doubt you need to be evaluated by an *IMPARTIAL* psychiatrist. Despite whatever effort a psychologist/psychiatrist/social worker that works for social security makes to be objective, it's impossible to know for sure that his opinion is not being biased by his position. You definitely need to get an objective opinion. I know it is nearly impossible to do now that you have all these things you've been told swirling around in your head, but if you can try to keep in perspective that this is only one person's opinion and this very important fact:
It is EXTREMELY common for symptoms of dysautonomia to get confounded in with the symptoms of various psychiatric conditions and it takes cooperation between dysauto docs (electrophysiologist-cardiologists and/or neurologists) AND mental health professionals (psychiatrists and/or psychologists) to sort out what is what in cases where there is comorbidity of psychiatric conditions and dysautonomic conditions. For example, here's a quote in a medical journal article about POTS:
"Psychological Profile in POTS
Patients with POTS are sometimes clinically diagnosed as having anxiety disorders such as panic disorder. Indeed, patients demonstrate elevated scores on the Beck Anxiety Inventory10 (23±10 vs. 7±8; P<0.001), a commonly used instrument that quantifies the magnitude of anxiety symptoms11. Unfortunately, this questionnaire includes somatic anxiety symptoms (such as palpitation) which can result from a hyperadrenergic state such as is seen in POTS. When a newer, cognitive-based measure of anxiety (the Anxiety Sensitivity Index12) is used, there was a trend toward less anxiety in the patients with POTS than the general population (15±10 vs. 19±9; P=0.063)11. Thus, much of the anxiety attributed to patients with POTS might be due to a misinterpretation of their physical symptoms.
We did find that patients with POTS often have diminished attention and concentration compared to matched healthy volunteers11. Using the Inattention score from the Connors Adult ADHD Rating Scale13, the patients with POTS scored significantly higher than did the normal control subjects."
from Raj, Satish R. The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Indian Pacing and Electrophysiology Journal (ISSN 0972-6292), 6(2): 84-99 (2006)
Note that it says "much of the anxiety attributed to patients with POTS might be due to a misinterpretation of their physical symptoms!"
Here's another article fully devoted to the study of POTS and psychology, if you're interested in that:
The bottom line is that whomever evaluates you psychologically is going to have to take the confounding variables of dysautonomia into consideration. It would likely be extremely helpful for you to bring some printouts of information about your type of dysauto, and a letter from your dysauto doc explaining the symptoms that could be misread as psychiatric. (Note that sometimes psychiatric medicines CAN help with these symptoms. Some patients with POTS, for example, find that benzodiazapenes such as Ativan help take the edge off anxiety they experience from excess norepinephrine surges.)
I would not wait for a denial to see your own psychiatrist or psychologist. Social security will process things at a snail's pace as it is, you might as well make things go as quickly as possible on your end; plus, I gather you will have more peace of mind the sooner you get a better resolution and some sound advice.
Let us know if there are other questions we can answer for you! Take good care of yourself.
thank you :) for taking the time to post and those links
I'm going to read that article and already have the name of an outside psych dr because if I do have something else, I want to be treated so it doesn't go farther
So sorry for all you have been through. I agree with Heiferly's post. The Social Security docs, including psychiatrists/psychologists, etc, are also unlikely to be familiar with POTS, which of course affects their ability to evaluate you fairly.
It wouldn't be unusual for you to be depressed since people living with POTS, or any medical illness, can become depressed as a result of being sick. And like Heiferly said, there are POTS symptoms which can look like anxiety and those which can cause anxiety. I have found myself struggling with depression and anxiety over the years and see a wonderful psychologist who helps support me in the daily challenges of this illness and has also helped me deal with the stress of not always being treated fairly or well by the medical system and disability agencies.
It is so hard ( I have been there!) to feel like you have not been treated or evaluated fairly or with respect. Hang in there and keep reminding yourself this is one person's perspective and fortunately someone you will probably never have to see again.
Take care of yourself and surround yourself with healthy support.
I will be doing counseling as well starting next week through my pain management Dr I have been told by three Dr's they feel I have Dysautonomia, but they all want me to see some Dr in Cleveland to be tested which is not a problem, but we couldn't get the insurance to approve a referral before the insurance ran out. Now I have to wait to get in on that even longer. I am afraid If I mention this they will again thing I am nuts. I get a rush of Anxiety symptoms right after taking my Thyroid http://www.medhelp.org/posts/Neurology/Neurological-Symptoms-of-Anxiety-Depression/show/911862medication
and have found that if I take a Xanex right after that tends to lessen the amount of Anxiety that hits after taking it. My Endocrinologist was the first one who told me of Dysautonomia because I seem to have reactions to medications that increase symptoms of Anxiety and Central Nervous syndrome I become hypersensitive and my Leg neuralgia acts up even more. Funny thing for me out of all the medications I have been on I have a bad feeling Xanex is the one they will need to keep an eye on me with . This calms me like no other medication can. My pain meds do a great job of controlling the pain etc, but when I get the anxiety hits this stuff controls it all, very mild pain break through etc. At first I was really afraid to even take it due to a reaction I had from Valium about 13 years ago. I got the prescription from my pain dr, but sat and looked at the bottle on my night stand for about a week before getting up the nerve to take it. It is pretty much like that with a lot of medications I never know what way it will go. Does any of this sound like symptoms of Dysautonomia? I also get the VERY horrid creepy crawling in my legs so bad I want to just shoot myself. I did not test positive for RLS this time I believe due to the medications keeping that under control, however I still twitch a lot mostly nights that I take ultram. The twitching is so force full have hit my husband with my arm or fist etc. Again this only happens that bad when I take the Ultram at night. Anyway all three dr's think I react to certain medications due to the Dysautonomia and my normal anxiety increases all my nerve symptoms and fibro symptoms etc. I just don't understand why xanex is controlling most of my break through so much better than a opiate etc? Okay I just kind of went off here and there, but if anyone thinks any of this sounds like it could even be possible please get back with me. Thanks so much. What would be so fantastic if Dysautonomia was my only problem and was the problem that is causing other problems so if we can take care of that then we can take care of all the other stuff. Should I bring articles of dysautonomia or records that state this could be the problem. My endocrinologist and Neurologist sleep dr as well as my family dr are all saying this is possible.
There are specific tests that are done to assess the function of the autonomic nervous system (i.e. to test for the various types of dysautonomia). From what I am getting from your post here, thus far no tests have been done whatsoever to assess the function of your nervous system, not even basic blood pressure or heart rate monitoring. Without this rudimentary information, or a description of actual symptoms (beyond just drug reactions), it is very difficult to speculate on whether or not you might have some type of dysautonomia.
While it is true that people with autonomic nervous system dysfunction sometimes react differently to certain classes of drugs (due to the action of these medications on the nervous system), drug reactions are never used as a basis to make a clinical diagnosis of dysautonomia. I can see why your doctors might suspect that autonomic dysfunction is possible in your case, but I agree that further assessment such as testing at a autonomic clinic such as the one at Cleveland Clinic (or University Hospitals at Case, also in Cleveland ... not sure to which one your doc was planning to refer you) is necessary to make any definitive decision about whether this is the case or not.
Short of going to a major autonomic testing hospital like the ones in Cleveland, though, there are some tests which are more widely available at most major teaching hospitals nationwide in the US which would get you off to a good start. A referral to a neurologist or a cardiologist (often an electrophysiologist or "EP-" cardiologist) who has some experience with autonomic patients would be a good start. Just getting some simple bloodwork, an EKG, holter monitor, tilt table test, and possibly ambulatory blood pressure monitoring would most likely tell you whether it's worth going for a full workup somewhere like Cleveland or not. They might also want to do an MRI, EMG/nerve conduction study, stress echo/exercise stress test/or cardiopulmonary stress test, or other tests depending on your symptoms and what tests are available at the facility.
I would def go and get testing done from top to bottom, I wish my EP or cardiologist would have sent me back in August 2009 when I first was dx. I had great insurance then that paid for everything and now my new cardiologist referred me to Vanderbilt for further testing but my insurance isn't going to cover 20% of the testing so I really can't afford it on top of all my other medical costs I've paid in 2011 so far.
plus if you ever file for SSDI having a large clinic info and doctors on your side seems to be very beneficial.