Your pain may not be due to GB residual

    • Anonymous
      August 21, 2011 at 10:52 am

      Last year ChicoLiz began having significant increased pain as well as significant decrease in strength. Consulted GP who stated that this was not due to GB and did not really accept her statement that she was losing strength. She managed to get an appointment with a local neurologist who had taken over her case after her initial neurologist moved from the area. He also stated that she did not have GB now and that the decreased weakness and increased pain was not due to GB. He treated her disrespectfully and prescribed an antidepressant which only served to make her more tired. The followup visit was just as unproductive with him again treating her with disrespect as well as me, her husband. He prescribed a different antidepressant. It was at that point that one of the contributors from this support group recommended one of the physicians who serves on the advisory committee for this group. We managed to get an appointment with the neurologist in San Francisco. After listening politely for several minutes, he stopped taking notes and put the chart aside. He stated that he felt she had “fibromyalgia”. It has been my (her husband, an RN for 36 years) opinion that Fibromyalgia is a catchall descriptive diagnosis that does not identify the medical problem. It is usually treated with antidepressants. Several days later Liz was reading an advertisement about Zetia which she had been taking for about four years to treat her slightly elevated cholesterol. It noted that weakness and muscular pain were possible side effects of this drug. A couple of days after that I ran into a semi-retired Emergency Medicine physician friend of mine who inquired about Liz’s health. When I described her symptoms, without pause, he asked if she was taking Zetia. He suggested that she stop taking it and allow about three months to see if the symptoms resolved. She did and they did. The take away is that first, don’t assume that a change in symptoms is due to GB. Second, the physicians seem to assume depression is the cause rather than the result of the pain. Third, don’t trust the thoroughness of the physicians exam and knowledge of medications prescribed. Be you own advocate. Three physicians did not even consider the possibility of side effects of medications, yet a retired country doc picked up on it immediately. Liz continues to regain strength and is doing well. She still has the residual GB pain and weakness she has had since recovery, but it is under reasonalble control.

    • Anonymous
      August 21, 2011 at 11:20 pm

      Our point was that three MDs neglected to note that or followup on it. Most people do not have the wherewithal to do the research much less understand it, they trust their MDs. The physician patient relationship is based on trust. Liz was first thought to be neurotic when here initial GB symptoms presented. Now with her pain, she is again, and again diagnosed as neurotic or depressed. The MDs are not listening to their patients. They need to LISTEN! I worked as an RN for a long time. I know it can be difficult to listen to all those complaints, but that is the job. As one of my ER MD friends said many times: “Listen to your patients, they will tell you what is wrong”. By that he meant that lab tests and xrays give you only a small portion of the information needed to diagnose. I recently retired from healthcare and have become greatly disillusioned by what I see and hear.

    • Anonymous
      August 22, 2011 at 8:39 am

      I hear what you are saying. Doctors don’t seem to listen. They all too often jump to conclusions by following the easiest path of resistance. They want to categorize everyone as quickly as possible and move forward with the “standard” therapy for whatever pigeon hole the patient has been placed into. I think a great deal of the problem is caused by the medical insurers. The insurance companies simply will not pay a physician to take time with a patient and really find out what is going on. It’s hurry up, give them a prescription, and send them on their way. Since being diagnosed with CIDP I have seen first-hand the politics of medicine and medical research. It’s ugly, and it seems sometimes as if the patient is the least of anyone’s concern. The almighty dollar rules.:mad: