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What if it is "All in My Head"?
I'm sure the phrase "it's all in your head" is very familiar to most Mayo Clinic patients. But how do you KNOW it isn't all in your head, or a psychosomatic condition?
I've been having chronic health issues since June. I had some definite abnormalities in the beginning with an elevated WBC count (although not outrageous), but now, I have weird test results (mostly on the infectious disease side, or non-specific markers like CRP or lactate dehydrogenase), but as time's gone on nothing that is like wildly abnormal or shouts "DING DING DING" or explains everything.
Mid-July, after a ton of testing and the only thing consistently abnormal in my blood work for two weeks was a slightly elevated CRP, my primary care doctor said if the multitude of specialists I was seeing didn't come up with anything else, I either needed to "just push through it" or apply to Mayo (the slightly elevated CRP could be from something as minor as gingivitis, she said). In August, after the results of my Upper Endoscopy biopsy was negative for H. Pylori (although that's another side story), the gastroenterologist suggested my gastritis could be caused by anxiety.
Ironically, I wasn't all that anxious until it was suggested that my problems were all the result of anxiety. I made an appointment with a psychologist specializing in somatic disorders (although I wasn't able to get in until 9/25), but I've been agonizing over that possibility ever since. That fear, as well as a feeling that "I'm not quite sick enough", is a large part of what kept me from applying to Mayo for so long despite urging from family, colleagues and two of my specialists.
I guess at what point SHOULD a person accept "it's all in my head" as the diagnosis? There's two totally different stories -- person A persists through every "all's fine" diagnosis and finds out she has XXXX, or person B persists through every "all's fine" diagnosis and finds out she really IS fine, it's psychological. Is there a way to know before you run out of tests/money/disability and embarrass yourself in front of your friends, family and Mayo which you are? Anything that is a red flag for psychosomatic or psychological illness as a cause rather than physical illness? How do you stay confident that what you feel is real and you're doing the right thing?
Would appreciate any insights, especially from anyone with a somataform disorder or long journey to diagnosis at Mayo.
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Well, I have to admit I find myself completely baffled. I was so concerned about showing up and finding out it was "all in my head" (although I must admit I no longer am concerned about that after some more recent abnormal findings), but the possibility that Mayo might not accept me for an appointment never crossed my mind. I was initially told by the Infectious Disease department that they were referring me instead to Internal Medicine, so I completed their "survey/questionaire" and finally called them back when I didn't hear anything, just to be told that they were not accepting my case at this time. As I said, my abnormal test results haven't been like off-the-charts abnormal, but it's not as if I don't have ANY abnormal findings, plus two specialists (infectious disease and rheumatologist) sent in referrals. I just don't understand how I could not get an appointment; the infectious disease specialist was baffled as well (he thought maybe the potential Lyme component had turned them off). They said I could have the specialist(s) call in and speak to someone and maybe they would reconsider, which the infectious disease specialist is going to do, but I'm just very confused and disheartened. I was sure Mayo would have some kind of answer, even if it was just the dreaded "psychological" diagnosis, but to not receive any help at all never crossed my mind. Can anyone explain this? Did I do something wrong? Is there something else I should do? I sent in 100s of pages of medical records and two physician referrals. How can I get help?
@peabody88 Don't feel that way you are not alone. Most of us seem that way with the medical system we have right now but l didn't know what was going on with me either and the doctors were also making me think it was in my head but l had to pray first then l went after them like l was in a war by myself and l was only defending myself, health and sanity because it's always you and your wrong. I have to say though l do have some wonderful doctors but it seems like when you have a good one and everything is going good he or she retires or moves. I have had so many doctors that they say on my chart she has seen many doctors with the same outcome especially one hospital and a majority of the doctors there because they are covering up because the mayo clinic found something and they didn't. So l highly recommend the mayo clinic since that where l went for a second opinion. And l had a doctor out there who also thought it was in my head because she didn't know the symptoms of the disease l have but after everything was done she had to say you were misdiagnosed. But they have a team of doctors and they listen. Their goal is to help the patient and to not make the patient feel like it's all in there head. I love it at the mayo clinic and wish l lived right in Minnesota. If l did l would save my insurance millions of dollars. But l am heading out there this Sunday finally after this year with my doctors. In my state we are rated a whooping 47 out of 50 in healthcare but l can say you will know something when you leave and that's always something good. I hope l have helped you. Good Luck
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1 ReactionDo you feel all Mayo campuses are similar? They all talk to each other on cases, right?
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1 ReactionWhat a story. Yet, I' looking at the cup half full. No heart disease, no cancer, no broken bones. Also, have you played with diet? It's a big factor that most drs ignore.
on Photo/Files, the pics are coming in sideways...go figure.