AngelM
Senior Member
- Messages
- 150
- Location
- Oklahoma City
I have nowhere to go and no one to talk to. I need some solid advice. I was diagnosed with CFS in 2000, and was in and out of remission for the next thirteen years, but managed well. Over the past three years, my health has steadily declined. About a year ago, I began experiencing weakness in my arm and leg muscles. My arms and feet felt like they were made of lead. I had difficulty walking, like I was dragging my feet, though I’m not sure it was evident to anyone but me. I was also short of breath so I went to the ER and a battery of tests was done, including CT Scans head to toe, EKG, blood panels, snd MRI of my brain. The only thing they found was an elevated indicator for Myasthenia Gravis. My daughter has MG, so I was relieved that, at last, I knew what was wrong. I found a neurologist recommended by the MG foundation, traveled 700 miles to see her, and she acted like she was too busy to deal with me. She dismissed my symptoms and lab results and told me that there was absolutely nothing wrong with me. I remember my daughter saying, “Mom, isn’t that great? There is nothing wrong.” But I didn’t feel any different than I did when I walked through the door. So, NO, it was not great!
Over the past fourteen months, the symptoms have slowly worsened along with the fatigue. My muscles burn like I have been lifting weights. I feel dizzy, uncoordinated, have to concentrate very hard to walk straight without hitting walls like a drunk. I’ve also begun having vision problems. Since my clean bill of health, last year, my family is convinced my problems are psychosomatic and want me to enter some kind of behavioral health program. Frankly, I don’t have the stamina to go through any kind of outpatient program. Just taking a shower wears me out. Much less getting in the car and driving somewhere. If I have enough energy to clean the house on one day , I pay for it the next by not being able to get out of bed.
I accepted the CFS diagnosis in 2000, but I didn’t expect my symptoms to get worse. I have to do something. The progression of these symptoms are frightening me. I don’t know whether I should go back to the ER or see my PCP, who will set me up with referrals to see specialists. I have communicated my situation with my PCP by messaging, but he knows nothing about CFS other than what he can pull up on his computer. I need to know what tests I should ask him to do. I failed a tilt table test in 2001 and am wondering now if POTS should be looked at more seriously. I also am concerned about mold. But I don’t know whether I should see a neurologist, a cardiologist, an allergist, or an internal medicine doctor. BTW it takes months to get into see any specialist. There are no CFS doctors within 1000 miles of here, at least that I am aware of. I am on a list to see a nurse practitioner at an integrated medicine clinic, but it has been months since she received my medical records, with no word of an appointment.
What is the best way for me to handle this? Everyone in my family has given up on me. I’m very close to giving up on myself. It is getting too hard.
Over the past fourteen months, the symptoms have slowly worsened along with the fatigue. My muscles burn like I have been lifting weights. I feel dizzy, uncoordinated, have to concentrate very hard to walk straight without hitting walls like a drunk. I’ve also begun having vision problems. Since my clean bill of health, last year, my family is convinced my problems are psychosomatic and want me to enter some kind of behavioral health program. Frankly, I don’t have the stamina to go through any kind of outpatient program. Just taking a shower wears me out. Much less getting in the car and driving somewhere. If I have enough energy to clean the house on one day , I pay for it the next by not being able to get out of bed.
I accepted the CFS diagnosis in 2000, but I didn’t expect my symptoms to get worse. I have to do something. The progression of these symptoms are frightening me. I don’t know whether I should go back to the ER or see my PCP, who will set me up with referrals to see specialists. I have communicated my situation with my PCP by messaging, but he knows nothing about CFS other than what he can pull up on his computer. I need to know what tests I should ask him to do. I failed a tilt table test in 2001 and am wondering now if POTS should be looked at more seriously. I also am concerned about mold. But I don’t know whether I should see a neurologist, a cardiologist, an allergist, or an internal medicine doctor. BTW it takes months to get into see any specialist. There are no CFS doctors within 1000 miles of here, at least that I am aware of. I am on a list to see a nurse practitioner at an integrated medicine clinic, but it has been months since she received my medical records, with no word of an appointment.
What is the best way for me to handle this? Everyone in my family has given up on me. I’m very close to giving up on myself. It is getting too hard.