As you may know, I have my very first infectious disease doctor visit on Wednesday and I am so looking forward to it. I am also hoping to be validated, tested and listened to. I may have some kinds of expectations and as of today won't take no for an answer!!!!
When I go to specialists visits, I often return home thinking I forgot to discuss certain aspects or symptoms of the disease. I also feel that my primary care provider is not getting what I tell her, so I doubt that the right information is being passed on to the specialist.
So I decided to write my own medical history. One of the advantage of doing this is that I won't forget anything- all my info is there. I can return and edit as more data occurs, test results, new treatments, etc...
Any disadvantages to it? Not in my opinion. I used to work as a labor and delivery nurse and a few of my patients would come with a birthing plan. While some birthing plans seem pretty legit, some others were a bit out of this world and maybe some of them were a plan for failure. But in this situation, sometimes you got a limited amount of time to see the doctor and "make a first impression", I mean telling the whole story.
I decided to share the structure of my medical history in case some would like to follow the example. It may or may not help you, but at least it may help some of you thinking about what is important to say.
Mine is 4 pages long, perhaps a bit too long. I divided my history in a few categories:
1) Name, date of birth, perhaps address, phone number, and e-mail address. If you want to add your insurance contacts, it may be a good place to do so-
2) Family history: I decided to get this category out of the way quickly because it's not long, and usually the doctors ask. First, health status of parents, alive or dead, what they died of, and health history: cancer, neuro-immune disease, cardio-vascular or diabetes. Then I added my siblings. Healthy, or not and if not, what is it. And lastly, more remote family history, aunt and uncles, grand parents. I would add in laws only if it pertained to transmission of infectious diseases.
3) Social history. Doctors want to know your living situation, married or single, do you have children, are they healthy? Do you smoke, have you ever smoked? Do you do recreational drugs? Alcohol? What is/ was your profession? How do you currently make a living? Do you receive government benefits? Do you have insurance? Are you a citizen of the country? Were you very active before getting sick? Did you complete a university degree? Anything that pertains to your social situation.
4) Health history: or co-morbididity. I started from childhood, did I get childhood diseases e.g chicken pox, did I get all the vaccinations, any reactions, did I get surgeries, and elaborate on that. What about gynecological history? Anything that sticks out of the ordinary would be worthwhile to be noted. And in general were you healthy prior to being sick with ME/CFS?
5) Current medications- and if you have been ill for a long time, what have you been on in the past (this may need to be added as another category (Past medication) Here I listed all my meds, dosages and what it is for. Vitamins and herbal meds should also be included, along with wether it is helpful to you or not, and dosages. As you may know, mega doses of vitamins and herbal/ homeopathic meds should be reported as there may be some synergy and drug interactions with what the new specialist will recommend.
6) Current illness history. That's a big paragraph. How did it start? How ill were you in the acute phase? What were your symptoms? I wrote this paragraph in a chronologic order mentioning dates, seasons, months, whatever is relevant. It may be important to note when you were totally incapacitated, or whether you had remissions and functional periods. I wrote down briefly the most relevant blood work that has been done (XMRV, NK cells, or grossly abnormal blood values) I am planning to bring my medical binder with me so if the doctor wants more information I am ready to provide results). Which other specialists did you see, when and what was the treatment recommended, did it work? Did you have any imaging testing and what was the results? Be precise, and get to the point. Since my illness has been relatively short, I wrote down month by month, then what happened last summer, last fall. If you have been ill for many years, this may not be necessary especially if your status has not changed much.
7) Current symptoms. This is a head to toe self assessment. What are your symptoms related to ME/CFS? How debilitating is it, what does it feel like? What is your functional status? Do you sleep at night? This section is important. It is great to do this exercise ahead of time so you can review it as it come closer to your dr appointment and make changes as necessary. Again be precise and write only symptoms that pertains to ME/CFS. This is likely where your own family physician will not have written much about your current condition because they don't necessarily know. Also it allows you to say it all and not forget anything.
8) Lastly, I had a category called "Impression/ Concerns" where I wanted to ask questions in regards to my situation, and what I found was most concerning about my current illness. I also wrote down what I wanted to be tested for and whether some aspects of the illness needed more attention.
Since I don't know this doctors and ME /CFS is all of a sudden more recognized (at least I hope) I am attaching 15 pages worth of abstracts that I felt relevant to my conditions and while some papers are fairly old (2003) a lot of them are brand new and deserve attention. If the doctor wants to take a look at it, fine, if not, too bad. But I feel I am doing them a favor by attaching papers relevant to our condition and how it pertains to XMRV.
So with my papers in hands, I hope to be ready for Wednesday and hope to get treated with respect and care.
When I go to specialists visits, I often return home thinking I forgot to discuss certain aspects or symptoms of the disease. I also feel that my primary care provider is not getting what I tell her, so I doubt that the right information is being passed on to the specialist.
So I decided to write my own medical history. One of the advantage of doing this is that I won't forget anything- all my info is there. I can return and edit as more data occurs, test results, new treatments, etc...
Any disadvantages to it? Not in my opinion. I used to work as a labor and delivery nurse and a few of my patients would come with a birthing plan. While some birthing plans seem pretty legit, some others were a bit out of this world and maybe some of them were a plan for failure. But in this situation, sometimes you got a limited amount of time to see the doctor and "make a first impression", I mean telling the whole story.
I decided to share the structure of my medical history in case some would like to follow the example. It may or may not help you, but at least it may help some of you thinking about what is important to say.
Mine is 4 pages long, perhaps a bit too long. I divided my history in a few categories:
1) Name, date of birth, perhaps address, phone number, and e-mail address. If you want to add your insurance contacts, it may be a good place to do so-
2) Family history: I decided to get this category out of the way quickly because it's not long, and usually the doctors ask. First, health status of parents, alive or dead, what they died of, and health history: cancer, neuro-immune disease, cardio-vascular or diabetes. Then I added my siblings. Healthy, or not and if not, what is it. And lastly, more remote family history, aunt and uncles, grand parents. I would add in laws only if it pertained to transmission of infectious diseases.
3) Social history. Doctors want to know your living situation, married or single, do you have children, are they healthy? Do you smoke, have you ever smoked? Do you do recreational drugs? Alcohol? What is/ was your profession? How do you currently make a living? Do you receive government benefits? Do you have insurance? Are you a citizen of the country? Were you very active before getting sick? Did you complete a university degree? Anything that pertains to your social situation.
4) Health history: or co-morbididity. I started from childhood, did I get childhood diseases e.g chicken pox, did I get all the vaccinations, any reactions, did I get surgeries, and elaborate on that. What about gynecological history? Anything that sticks out of the ordinary would be worthwhile to be noted. And in general were you healthy prior to being sick with ME/CFS?
5) Current medications- and if you have been ill for a long time, what have you been on in the past (this may need to be added as another category (Past medication) Here I listed all my meds, dosages and what it is for. Vitamins and herbal meds should also be included, along with wether it is helpful to you or not, and dosages. As you may know, mega doses of vitamins and herbal/ homeopathic meds should be reported as there may be some synergy and drug interactions with what the new specialist will recommend.
6) Current illness history. That's a big paragraph. How did it start? How ill were you in the acute phase? What were your symptoms? I wrote this paragraph in a chronologic order mentioning dates, seasons, months, whatever is relevant. It may be important to note when you were totally incapacitated, or whether you had remissions and functional periods. I wrote down briefly the most relevant blood work that has been done (XMRV, NK cells, or grossly abnormal blood values) I am planning to bring my medical binder with me so if the doctor wants more information I am ready to provide results). Which other specialists did you see, when and what was the treatment recommended, did it work? Did you have any imaging testing and what was the results? Be precise, and get to the point. Since my illness has been relatively short, I wrote down month by month, then what happened last summer, last fall. If you have been ill for many years, this may not be necessary especially if your status has not changed much.
7) Current symptoms. This is a head to toe self assessment. What are your symptoms related to ME/CFS? How debilitating is it, what does it feel like? What is your functional status? Do you sleep at night? This section is important. It is great to do this exercise ahead of time so you can review it as it come closer to your dr appointment and make changes as necessary. Again be precise and write only symptoms that pertains to ME/CFS. This is likely where your own family physician will not have written much about your current condition because they don't necessarily know. Also it allows you to say it all and not forget anything.
8) Lastly, I had a category called "Impression/ Concerns" where I wanted to ask questions in regards to my situation, and what I found was most concerning about my current illness. I also wrote down what I wanted to be tested for and whether some aspects of the illness needed more attention.
Since I don't know this doctors and ME /CFS is all of a sudden more recognized (at least I hope) I am attaching 15 pages worth of abstracts that I felt relevant to my conditions and while some papers are fairly old (2003) a lot of them are brand new and deserve attention. If the doctor wants to take a look at it, fine, if not, too bad. But I feel I am doing them a favor by attaching papers relevant to our condition and how it pertains to XMRV.
So with my papers in hands, I hope to be ready for Wednesday and hope to get treated with respect and care.
