My new PCP is aware that I've been diagnosed with ME/CFS by a specialist. I've repeatedly told her about my chronic fatigue / crashes. After I told her that I used to do aerobics 6 days a week prior to this illness, she proceeded to tell me to join an aerobics class. Proof to me that these (mainstream) doctors just don't get it or they don't really believe in ME or CFS. They think it's all in our heads. We can only try to point them to books or documents and hope they understand, but I just think many of these doctors will never get it. Thank you Colleen for these important documents.
It is so hard to reach some of these doctors as they are so "brainwashed" as to not be able to see what is right in front of them. I hope your PCP overcomes that and sees what is happening right int front her. Thanks for the feedback. :)
Thank-you so much for writing all this, Colleen. The most important thing for each patient is a properly-investigated diagnosis, whether it turns out to be M.E, or something else with similar symptoms.
Invaluable info for patients and advocates alike. Too many advocates continue to use the umbrella terms such as "ME/CFS". They claim to fight for M.E. but sadly that turns out not to be the case.
I also have unexplained muscle spasms and paralysis of my right leg. I did read the whole ICP diagnosis, which is 100% better than the CDC's version. But the problems remain: 1) Obviously, no doctor is going to read all of that. 2) What if we don't have all of those symptoms or have symptoms not included? And it is not possible to rid ourselves of toxins if we eat American grocery store food. It's loaded with pesticides, insecticides, and preservatives. I try to "eat clean;" it's just not possible.
How does one rid the body of heavy metals? Is there a specialist who does this?
As always, thanks for keeping us informed and up to date.
I think muscle spasms are fairly common. The IC Primer discusses using magnesium sulfate for muscle spasms. While paralysis isn't often discussed in the literature, it is often discussed in the patient groups. I have both as well, but not limited to one leg. It may have to do with the endothelial dysfunction affecting calcium/magnesium getting into the muscle tissues of that leg.
Not all of the symptoms are required for a diagnosis of ME. There is also an atypical ME diagnosis but those fitting that criteria are not recommended to be used in research.
Having other symptoms is something many of us have experienced, but it is always good to see if those may indicate an alternative diagnosis.
Toxins are certainly a problem and can be very hard to avoid. I know some others who have delved deeply into ridding the body of heavy metals, but it's not something I have done other than get a test for heavy metals and replace my fillings as needed with something other than metal.
I appreciate the questions and feedback. Glad you find it helpful. :)
My new PCP is aware that I've been diagnosed with ME/CFS by a specialist. I've repeatedly told her about my chronic fatigue / crashes. After I told her that I used to do aerobics 6 days a week prior to this illness, she proceeded to tell me to join an aerobics class. Proof to me that these (mainstream) doctors just don't get it or they don't really believe in ME or CFS. They think it's all in our heads. We can only try to point them to books or documents and hope they understand, but I just think many of these doctors will never get it. Thank you Colleen for these important documents.
It is so hard to reach some of these doctors as they are so "brainwashed" as to not be able to see what is right in front of them. I hope your PCP overcomes that and sees what is happening right int front her. Thanks for the feedback. :)
As always, incredibly thorough and helpful information, Colleen. Thank you!
Thanks Patricia! :)
Thank-you so much for writing all this, Colleen. The most important thing for each patient is a properly-investigated diagnosis, whether it turns out to be M.E, or something else with similar symptoms.
Invaluable info for patients and advocates alike. Too many advocates continue to use the umbrella terms such as "ME/CFS". They claim to fight for M.E. but sadly that turns out not to be the case.
I couldn't agree more. Thank you for your feedback.
I also have unexplained muscle spasms and paralysis of my right leg. I did read the whole ICP diagnosis, which is 100% better than the CDC's version. But the problems remain: 1) Obviously, no doctor is going to read all of that. 2) What if we don't have all of those symptoms or have symptoms not included? And it is not possible to rid ourselves of toxins if we eat American grocery store food. It's loaded with pesticides, insecticides, and preservatives. I try to "eat clean;" it's just not possible.
How does one rid the body of heavy metals? Is there a specialist who does this?
As always, thanks for keeping us informed and up to date.
I think muscle spasms are fairly common. The IC Primer discusses using magnesium sulfate for muscle spasms. While paralysis isn't often discussed in the literature, it is often discussed in the patient groups. I have both as well, but not limited to one leg. It may have to do with the endothelial dysfunction affecting calcium/magnesium getting into the muscle tissues of that leg.
Not all of the symptoms are required for a diagnosis of ME. There is also an atypical ME diagnosis but those fitting that criteria are not recommended to be used in research.
Having other symptoms is something many of us have experienced, but it is always good to see if those may indicate an alternative diagnosis.
Toxins are certainly a problem and can be very hard to avoid. I know some others who have delved deeply into ridding the body of heavy metals, but it's not something I have done other than get a test for heavy metals and replace my fillings as needed with something other than metal.
I appreciate the questions and feedback. Glad you find it helpful. :)