- Messages
- 25
- Location
- plymouth, ma
Thank you for allowing me to join this board. Two doctors have suggested
My CFS to me. I have not been diagnosed formally. I have since the bottom fell out, been diagnosed with celiac disease. I have been tested for lupus, ms, seizures, metabolic myopothies, Lyme, myasthenia gravis, and am now in testing for CVID. I know that the dr will come back as always telling me that everything is fine. When it clearly isn't. I came down with MRSA 3 yrs ago and haven't been the same since. I actually contracted another MRSA infection 6 mos later. 6 months after that the fatigue was noticeably severe. Worse than any pregnancy. Memory loss had become extremely concerning. I was having a fluttering sensation in my brain. I developed food intolerances to more than 40 different foods and then my body started to reject everything I ate. GI symptoms were severe, I was losing a lb a day. I couldn't walk without assistance, and when I did the dizziness was horrendous. I was dizzy sitting, standing and laying. I couldn't walk straight and I felt like I was sinking into the ground. I couldn't get off the couch for months and when I went anywhere it was in a wheelchair. I was so weak. I couldn't put words together or hold a coherent conversation. My joints were so painful I couldn't walk down the stairs without crying, you couldn't touch my legs bc my bones hurt so bad. I was diagnosed with celiac disease and a neuroendocrine tumor in my pancreas, which was benign and was removed. I went on vancomycin drip before the surgery bc I was afraid of the MRSA again. After the surgery I didseem to get a bit stronger, until I started to decline back to where I was. I would have these episodes of severe dizziness (though I was dizzy constantly)brain fluttering sensation, and I would be walking, I would start to slow to the point where I couldn't walk, it is like walking through mud. My face goes grey and blank, I need assistance to get into a chair. Sounds and people walking by me are over stimulating, I am too tired to talk. I just sit dazed for an hour or so. The I can feel it lift and pass, but it can leave me exhausted for days or weeks. My question is, do any of you have these "episodes"? The drs don't know what to do wi me. If it doesn't exist in their specialty it must be in my head. I am tired of trying to prove I'm not psychosomatic. I have never been happier in my life except for the fact that I feel like I'm dying. This summer I sat in a chair in my garden, wrapped in a blanket while others did my work, and I thought, I feel like the woman in the movies that is dying from cancer and they wheel her out to be with the family in the final days.
The other thing is that my ANA is 640.... The rhuemy said it meant nothing. It was a phenomenon. My Igm was high, but it does go down to normal too. They have it listed on my file that I have mgus (pre myeloma ).... I had no idea.
I feel like I am bothering these drs. I wait for months for a new specialist or testing, then it's another dead end and I start again. The whole time I get weaker and sicker.
I appreciate any words of wisdom
My CFS to me. I have not been diagnosed formally. I have since the bottom fell out, been diagnosed with celiac disease. I have been tested for lupus, ms, seizures, metabolic myopothies, Lyme, myasthenia gravis, and am now in testing for CVID. I know that the dr will come back as always telling me that everything is fine. When it clearly isn't. I came down with MRSA 3 yrs ago and haven't been the same since. I actually contracted another MRSA infection 6 mos later. 6 months after that the fatigue was noticeably severe. Worse than any pregnancy. Memory loss had become extremely concerning. I was having a fluttering sensation in my brain. I developed food intolerances to more than 40 different foods and then my body started to reject everything I ate. GI symptoms were severe, I was losing a lb a day. I couldn't walk without assistance, and when I did the dizziness was horrendous. I was dizzy sitting, standing and laying. I couldn't walk straight and I felt like I was sinking into the ground. I couldn't get off the couch for months and when I went anywhere it was in a wheelchair. I was so weak. I couldn't put words together or hold a coherent conversation. My joints were so painful I couldn't walk down the stairs without crying, you couldn't touch my legs bc my bones hurt so bad. I was diagnosed with celiac disease and a neuroendocrine tumor in my pancreas, which was benign and was removed. I went on vancomycin drip before the surgery bc I was afraid of the MRSA again. After the surgery I didseem to get a bit stronger, until I started to decline back to where I was. I would have these episodes of severe dizziness (though I was dizzy constantly)brain fluttering sensation, and I would be walking, I would start to slow to the point where I couldn't walk, it is like walking through mud. My face goes grey and blank, I need assistance to get into a chair. Sounds and people walking by me are over stimulating, I am too tired to talk. I just sit dazed for an hour or so. The I can feel it lift and pass, but it can leave me exhausted for days or weeks. My question is, do any of you have these "episodes"? The drs don't know what to do wi me. If it doesn't exist in their specialty it must be in my head. I am tired of trying to prove I'm not psychosomatic. I have never been happier in my life except for the fact that I feel like I'm dying. This summer I sat in a chair in my garden, wrapped in a blanket while others did my work, and I thought, I feel like the woman in the movies that is dying from cancer and they wheel her out to be with the family in the final days.
The other thing is that my ANA is 640.... The rhuemy said it meant nothing. It was a phenomenon. My Igm was high, but it does go down to normal too. They have it listed on my file that I have mgus (pre myeloma ).... I had no idea.
I feel like I am bothering these drs. I wait for months for a new specialist or testing, then it's another dead end and I start again. The whole time I get weaker and sicker.
I appreciate any words of wisdom