November Girl
Senior Member
- Messages
- 328
- Location
- Texas
...though not with me.
I printed out a copy of the ICC and took it to my neurologist. i also told him that if my neurological symptoms had been taken more seriously by my doctors over the years, they might have realized that my mild seizure disorder was not fully treated. (He has only been my doc for 18 months) and that I had lost a lot over the last 20 years. (With my brain recovered from the seizures, I'm able to manage my ME/CFS much better. I would have been able to have a child. I wouldn't always have been healthy enough to do all the caregiving myself, but at least would have been coherent enough to see that it was done.) I talked with him about the common neurological problems we PWC have, and how they had impacted me.
So why was the doc upset? He has been diligent about reading all the journals, attending neurology conferences etc. He never saw a single reference to the neurological aspects of ME/CFS until his patient brought in the info. He had no idea that the World Health Organization classified it as a neurological disorder, as here in the US it's listed in rheumatology.
He even gave me an email address for me to send him more info.
The next week I took the same printout to my regular doctor. She also was glad to see the info, and I'll be bringing her more. Maybe between us we can get some of the testing and care I could only otherwise get from an ME specialist.
I've been reading the full text of the Canadian Definition article, which includes much more discussion of symptoms and treatments. I'll be taking that to her next - or more likely the link. It's 150 pages long.
http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf
I'm going to ask my friends and family to take the ICC to their own physicians. I like that it is very clear and extensively footnoted. I think that at least some of them will take it to their docs. This is my personal advocacy - to spread some basic knowledge of this disease.
I printed out a copy of the ICC and took it to my neurologist. i also told him that if my neurological symptoms had been taken more seriously by my doctors over the years, they might have realized that my mild seizure disorder was not fully treated. (He has only been my doc for 18 months) and that I had lost a lot over the last 20 years. (With my brain recovered from the seizures, I'm able to manage my ME/CFS much better. I would have been able to have a child. I wouldn't always have been healthy enough to do all the caregiving myself, but at least would have been coherent enough to see that it was done.) I talked with him about the common neurological problems we PWC have, and how they had impacted me.
So why was the doc upset? He has been diligent about reading all the journals, attending neurology conferences etc. He never saw a single reference to the neurological aspects of ME/CFS until his patient brought in the info. He had no idea that the World Health Organization classified it as a neurological disorder, as here in the US it's listed in rheumatology.
He even gave me an email address for me to send him more info.
The next week I took the same printout to my regular doctor. She also was glad to see the info, and I'll be bringing her more. Maybe between us we can get some of the testing and care I could only otherwise get from an ME specialist.
I've been reading the full text of the Canadian Definition article, which includes much more discussion of symptoms and treatments. I'll be taking that to her next - or more likely the link. It's 150 pages long.
http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf
I'm going to ask my friends and family to take the ICC to their own physicians. I like that it is very clear and extensively footnoted. I think that at least some of them will take it to their docs. This is my personal advocacy - to spread some basic knowledge of this disease.
