I have been lurking, trying to keep up with everyone and see what has been going on, but since my medical problems are due to connective tissue disease and not MS, I have not felt competent enough to post much.
However, I’d like to share something…in the past we have always stressed the importance of having your own medical records, and I would like to stress that with everyone again.
Last week I traveled to the state where I once lived, where I believe my medical problems began. My current immunologist was hoping to connect my current condition to a virus I had years ago.
The medical records I obtained from my old HMO include EVERYTHING. The doctor’s notes from every office visit were very helpful to jar my memory and help me put everything in order.
Here’s the clincher…I have a letter, written on 08-23-2000 by my PCP stating, “There are no signs of anemia or thyroid problems or inflammatory disease…right now I am finding no specific reason for your fatigue. Please contact my office if additional symptoms should develop.”
I have the corresponding blood test results dated 08-18-2000 which show a high ANA (speckled pattern), low RRB (2.97), low HGB (9.3), low HCT (27.7)…but she could find no reason for my fatigue? Next to these results, which were in BOLD on the flow sheet, it was noted that results were rechecked.
Had I known THEN about checking my own labs perhaps the eight years I have just endured would have been completely different and my life may not have come to a complete stop last summer.
Everyone, PLEASE get copies of all your test results, educate yourself on what they mean, and be your own advocate.
I'm also "converting" into a lurker--at this time, non-neurlogical symptoms are taking my center stage. I still hang out, because I still don't know where I belong. I'm very emotional too, I've been waking up exhausted and feeling nauseous most of the time. I'm waiting for some test results and trying to come up with a plan.
As for this post, yes, yes, YES. I echo wanna's remarks and think this is a notion that requires frequent reminders!
I've had a lot of the same luck. I had an abnormal MRI, but my 1st neuro told me AND MY PHYSICAN that it was normal. Only months later did I obtain the report and a 2nd opinion that in fact the results were concerning.
More recently I saw a rheumy who, in leafing through my blood work, noted some high levels from Jan. and July. Like Wanna, my PCP said she saw no reason for my symptoms. But the blood levels suggest inflammation, which could account for many of my symptoms.
Also, I always tell my doctors that my MAIN CONCERN is that my symptoms interfere with my concentration and make my work difficult. Yet in my records, that concern never made it into their notes.
It always seems uphill, I often need to ask more than once, and my PCP's office even charged a ridiculous fee for the records. But I agree it is important. Esp. if you are undiagosed and seeing different specialists. GET and KEEP your copies!
Hi, sweet friend!! I wish you would post more often, you are really missed around here.
I have a question about just this topic. You know I had my brain MRI and I have the report and CD here. I was told to take these to my neuro appt, but will I get them back? Do they just make copies or what. I just don't want this to get away from me.
I'll say again, quit lurking and start posting!!!!!!!!!! You have great experience with dealing with being in limboland and great advice for all of us.
Wonko...Hey girl, you are looking great by the way!!! As for the doctors, keep at 'em. I am glad I never gave up, in spite of the "don't know what is wrong with you" answer.
Shell...you are the sweetest! I am still doing well...taking prednisone and Plaquenil. I have been having trouble getting my prednisone level down. I'll be on it the rest of my life, but the doc just wants to get it down a bit more. I am riding over 100 miles per week on my bike, and I refuse to give into the cold weather. Work is going well and I have so much fun living again!
I keep reading posts, so I'll be here. Nice to "talk" to you!!! ((((HUGS)))) back you Sweetie!
Wanna, I didn't stop to think that I could make my own copy of the CD! Is it hard to do? I guess I might need to read my computer manual someday... :o)
I've had to remind some doctor's VERY strongly to give me back my MRIs; one wanted to show it to a colleague (he hadn't seen a hemangioma that pretty much took over a cervical vertbra before), and another had just dismissed me and her medical assistant grabbed my MRI and put it in my chart.
Your own copies are indeed your OWN copies. I need to take four MRIs in to my MS Specialist so she can make copies of them; I had left them with her for a week before, but she just looked at them and had a radiologist glance at them. Now she wants them digitized in their system so they will be accessible. The system there is so huge, I want to ask for a receipt for my MRIs! I'm sure they'll give them back, but if they got misplaced, it would be a bit of a pain to replace them myself.
Not if I can figure out how to make my own copies!
It is relatively easy to copy them. What I did was copied all the files from the CD into a folder on my computer, then copied that folder on a blank CD. Then if I ever did lose a CD I could just make a new one. If you have two disk drives you can just copy one CD onto another.
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