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I am having some unexplained medical issues that have been going on for over a year (some over 2 years) that are not going away and are progressively (but slowly) getting worse that me and my primary care doc and two neurologist docs can not figure out what is going on.
Id like another opinion and continue to further investigate to get to an answer, preferably from a panel of specialists to figure out what is going on. It does not have to be with a panel but with a panel, perhaps they could collectively throw their heads together to come up with something instead of going to one doc, finding out he doesn't know the answer (because he doesn't specialize in particular area/doesn't know) and him referring me to another doc, only to have to wait 6 months (or more) for initial appointment. Then - rinse, wash repeat.
The answer from the primary Care doc is just re-send to physical therapy even though I recently went. The first Neuro performed some tests and showed some abnormalities. The second neuro, 6 months later performed same tests and showed nothing.
I am not comfortable discussing what is going on in a general forum like this. I have documented (in Word Documents) all the symptoms and what is going on in great detail.
Is there a reputable website/forum where I can submit this detailed information of my symptoms and test results with a panel of neurologists/specialists for their review and feedback/suggestions with me?
I wouldn't even mind paying a reasonable fee if it was a reputable, well established website/service with good reviews.
Ive even considered going to a holistic doctor/MD who looks at the "whole person" and does tests not normally done in the medical community but those appointments and tests can be prohibitively expensive because holistic docs and the tests they order are generally expensive and are not covered by insurance. Also, I know many among the medical community consider them to be a "witch doctor" of sorts practicing medicine that is not backed by clinical trials. The medical insurance field apparently thinks the same thing as they don't cover them. Perhaps this is what I need though. I am on the fence about it.
Please assist
Last edited by txbullsfan; 08-27-2018 at 12:21 PM..
Get a referral to a school of medicine associated with a large teaching hospital in your area. They most often see the more difficult cases to diagnose and have the most up to date MDs and facilities.
Since we don't know your symptoms can't recommend a specialist type...If you are in Texas you have wonderful facilities in your state.
There are no such panels in this country. No physician worth his/her salt would diagnose without seeing the patient and all original tests. Go to a large teaching hospital.
There may be other panels like them. I ran across the existence of the concept in The Washington Post - "Medical Mysteries" series. Once a month, WaPo runs an article on a patient who had a medical mystery that plagued a patient for years. Ultimately it gets figured out. In one such instance, probably a year or more ago, I saw that the patient, actually I think it was a woman who sent her son's or her husband's info to a panel. It may have been the Harvard site, though that isn't ringing any bells with me. I'm thinking there is more than one. Anyway, I'm not even sure if they figured it out, but I thought it was cool that such a thing existed.
Also, a good read is "how to Avoid Becoming a Medical Mystery: https://www.washingtonpost.com/natio...=.b3f5f37af0a8 I believe you can access a few articles per month from WaPo without having to buy a subscription.
Are you near one of the campuses of the Mayo Clinic (Scottsdale/Phoenix AZ, Rochester MN, Jacksonville FL)? A few years ago, my husband was experiencing a medical mystery that our local doctors couldn't figure out. I got in touch with Mayo Clinic Jax (we lived in North Florida at the time) and we went over there for a consult with one of their specialists. He got the problem taken care of pretty quickly.
Johns Hopkins runs a respected Remote Second Opinions program, but I don't think it covers your location (I'm assuming you're in Texas by your handle). You can see more details on it here: https://www.hopkinsmedicine.org/seco...ion/index.html
You might try calling them to see if they know of a similar program that covers your state.
Since you mention neuro...may be worth looking to a CRPS / RSD board as they might have suggestions. I have found many to be extremely knowledgeable and helpful.
I agree with others; time to get yourself to a teaching hospital that has a SPECIALTY in your initial diagnosis or physical problem. They are not the same.
For example, I had brain lesions and a stroke that were initially treated by neurologists in Phoenix. When they could not make a definitive diagnosis, they sent me to UCLA Stroke Center. There I was diagnosed with an autoimmune disorder, so my treatment was handled by my neurologist AND a rheumatologist. (PS I got better after a long, drawn out process.)
Certain hospitals are known and have specialized in certain things. We have Duke here, and they have some world class specialty areas: Neurology, ophthalmology, brain cancer, et al. But if I am worried about skin cancer and certain other cancers, I'm going to Rex/UNC. Mayo is great but not at everything.
Without knowing you're specific problem, I can't suggest where you should go. But some research on the internet should reveal some information. Then ask your current physicians for a referral. If they balk, go anywhere and bring your records. And, when you get home, find new local physicians because any doctor that doesn't encourage a second opinion isn't a doctor you want.
Of course, if you're a hypochondriac, these suggestions don't apply.
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