Powered By
In 2023, I got a blood draw when I started with a new doctor. With my other doctor, I had started a new medicine. A year and a half later, I asked to do a new blood draw to have a more current baseline before I started another medicine with the new doctor. It's been one and a half years and he won't do a new blood draw. Online it keeps saying I should. Anyone else run into this? Should I keep advocating for a new blood draw so there is a current baseline? To see any adjustments from the… read more
@A MyEpilepsyTeam Member , Yes, do insist on getting bloodwork done. I say this because I don’t want what happened to me, to happen to you or anyone else. In early 2018 I quit my job & so I didn’t have any insurance at the time & didn’t know about the helpful resources out there at the time & then in mid 2018 I started working at a fast food place & in December 2018 while at work my arm twitched a little & I didn’t know why but it stopped & so I went on about my day but that evening while eating at a restaurant I began having trouble breathing, heart was racing & I don’t remember the other symptoms & so we went to the ER & they claimed that I was just dehydrated & I don’t want to go back to that hospital. As months progressed I began having some awful shaking in both arms, so bad that I would holler “Make it stop! Make it stop! Make it stop!”. A couple times my Mom had to literally feed me cause I was shaking so bad. Sometimes my right leg would shake. My vision gave me problems sometimes & my leg muscles tightened up one day at work that I had to go home before I even started. In May 2019 I got light headed at work & so my Mom took me to our Family clinic & the doctor saw that I hadn’t had bloodwork in a year or more & so he did bloodwork & found that my Depakote level was at 135 & normal is between 50 to 100 & so he adjusted my dosage & months later the shaking finally stopped. But he had me hurry to see a Neurologist. But in mid 2019 I started my verbal tics & so I sometimes wonder if they could have anything to do with all that hollering I experienced when my arms would shake & it was awful. So I now encourage others on here to keep up with the bloodwork because of these things that I experienced. I still experience verbal tics every day. Good luck. If need be, find a new doctor cause it’s your body & you want someone who cares & is responsible & that stuff should be monitored. Your friend in Texas, Becky
@A MyEpilepsyTeam Member Thank you for sharing your experience. I agree too - it's our body.
The type of epilepsy I have apparently is rare as well as music being a trigger so I already feel like a lab rat. I'm very careful about what I agree to now - much more than when I first started. The Dr. now told me he is going to close the referral for treatment if I don't do it - but I'm still not going to until I can make him do a blood draw first. I love having this group to ask questions and for advice!
Probably about 6 times a year. I used to have an iron storage problem, and I had to give a unit of blood weekly until I basically became slightly anemic. Those were some big needles, and I got over my fear of needles and blood draws. It did scar my arm, and I usually don’t even feel the sticks anymore.
My blood would be drawn when after so many days after being put onto a new medication. It would keep getting drawn until I’m at my full dosage of that medication, checking my blood levels with that medication.
Then a year or so down the road , my Dr. would check my blood levels with all my meds to see if my levels have changed . Then decide what direction to go from there.
I have a primary care physician, a cardiologist and an epileptologist. I have yearly bloodwork ordered by my primary care physician to be done before my annual appointment, and as that appointment approaches, I also contact my epileptologist's office to find out if he wishes to order any additional bloodwork. All the results are added to MyChart, and they can both see them. Along with the standard diagnostic blood panels, I know by now that my epileptologist would like to see a Lamictal level. The cardiologist uses the standard results and usually doesn't need anything more. I hate needles. I set it up for everything to be drawn with a single poke.
My opinion here is that if you feel you're being mismanaged, ignored, or dismissed by any health care provider, you should find another. I fired my first neuro team because I felt I was being mismanaged. I especially took issue with the abrasiveness of the neurosurgeon, who absolutely insisted on a brain resection, actually arguing with me about it. I had questions he wasn't answering and too many "I don't know"s. Once surgery is mentioned I always get a second opinion. As it turned out, I didn't need surgery. I'm 7 years seizure-free with my epileptologist, and not even a mention of surgery. My PCP, cardiologist and epileptologist are comfortable with yearly monitoring, so I schedule it all together, all results ready to review at my annual checkup.
I'm not impressed or intimidated by wall certificates. I'm impressed by professionalism and results. I see health care providers as contractors. I'm paying them for their services and expertise, just like the guy who remodels my bathroom or levels my concrete... and I consider it especially important for my health. Shoddy work? Poor bedside manner? Bad attitude? Disrespect? You're out of here, get your Maserati payment elsewhere. For what I'm paying them I don't think it's too much to expect.
Join
Your Privacy Choices
