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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

Oh, Blessed, it sure does sound like they are brushing you off. I had to wait two weeks after my first brain MRI, that seemed quite long to me. But the difference is, I got copies of my MRI when I left the test. This last time was even better, I got the MRIs on CD the next day, and they also gave me the radiologist's report. I'm sure I'm paying for these copies, but I'm VERY happy to have them! Call the place where you had the MRI, ask for copies of the MRI (on CD is much easier to store!) and a copy of the report. Grrrr, why do they try to make us feel like the stuff is not OURS! You are entitled to copies, they are not entitled to keep the results A SECRET!!!
Now, it seems to me that a responsible neurologist would call you in sooner than January if there is something suspicious. (How silly that they would set you up to be alarmed if that ends up being the case, grrrr again.) But here's the deal, I did not see the radiologist's report for my first MRI, but it must have been pretty vague. I did have a few small lesions, but no one thought I had MS. My neuro did, based more on my symptoms than anything else, order the EPs and LP. And she did, over the next few weeks, show my MRI to some other neuros and discussed my case. In the end it was determined that I have early stages, "mild" MS. AND -- the next MRI I had, 3 months after the first, showed several new lesions (I think we ended up counting 5 or 6 new ones).
Be proactive on your own behalf, it seems we cannot count on doctors to do it. Get your results. Pay for them on the spot if necessary, but get them. 3 and a half months is WAAAAAAY too long to wait.
thank you all. I am the bold and dedicated advocate for everyone but myself. I have to pray for the strength to call them for the results. I know it is crazy, but I get so intimidated. I know that i paid for these tests and if it were a dress or a pair of shoes, I'd be acting like a fool in the department store. Why am I not the same bold person in the doctors office? I guess it's because I have been brought to tears so many times. I am just afraid of feeling like a crazy person or like I've run into another brick wall.

I have even begun wondering if this really is all "in my head". :-(
I also get copies of all my test results and on occasion have called the Dr to report abnrmal results. According to HIPPA guidelines you have a right to a copies of your medical records. The one thing I have to remember when reading my own results is that this is a radiologist reading the results and giving his/her interpitation. The one you want to see the results is the nuerologist. They are the experts in determining MS lesions according to location and shape. I have had two MRI's in 12 mths and the second showed more lesions (large and to many to count) and have still not recieved a diagnoses. I definatley have become my own advocate. I do my own research, and always an as sweet as sugar when asking for special favors. People will do more for you if you make them believe they are the only ones who can help you. Sometimes waiting is the only option (remember other people are desperate too) if you have to wait do more research go in prepared and knowledgable.
WOW! :eek: lilc, you have the same fire my mom does! I wish I did, too! Maybe (like my mom says) when I get sick and tired of being sick and tired, I'll raise my voice and be heard....I think I am getting to that point. I am mad at my body right's like my spasms and twitches are basically nonstop now but when I was in the doctors office, I had only one little twitch! Come on body, if you want some help, show these docs how bad you can be!!! (That was meant to be funny, i'm not that crazy yet!!! :D )

I hope no one took my advice wrong about approaching the medical staff with a little vulnerability. Now here comes the great admission. I am an Rn and have worked in Dr's office and in house. That was in the past I am now a hospIce nurse and people do manipulate me now. I know first hand that if someone gets pushy with me over the phone(when I was an office nurse) I would probably drag my feet on their request. I'll probably get alot of flack for this but I'm just being honest. I also know that patients in the hosp. (that we called frequent flyers) knew how to manipulate the system. thats what everyone needs to figure out. I have been at both ends of the spectrum and believe me now that I'm on this end I feel bad about what I did in the office but I know it still happens. Office nurses are protective of their drs. I do manipulate the system know and ask for favors and I usually get them if I play the victim. I don't care How I get answers I just want answers. Infact today I got a scheduler in a big university hosp to get me in sooner with an MS secialist by playing the vctim. By the way they dont know I'm a nurse. I guess I just want you to understand I have not lost my dignity by doing this, I usually get off the phone thinking SUCKER!!!
Shad, yep, I do agree that sometimes test results can be a dangerous thing for us to get without the benefit of educated interpretation. But I still think we are entitled to have them within a reasonable amount of time. I'm truly hopeful that if a doctor sees something devastating in a test they would attempt to contact the patient promptly. (Oh, I guess MS could be considered devastating.) And when I have a test and have to wait 2 weeks to see the doctor for results I think it's reasonable. Guess I was thinking about how stressed out I would get over the course of 3 months, and how that stress could have a bad physical effect for Blessed.
The whole thing with my mom was very, very bad. Even after the doctor didn't bother to see her for 30 hours, she refused to see her when she finally got around to stopping by - because I had given her her medicine. That is when I exploded. It was a little funny, my dad, sister and older brother were in the room, watching. Dad was embarassed, but brother and sister were ready to go to jail with me if the doctor threw a punch...That doctor killed my mother. Sorry, it's only been 4 years, still a little raw...

I totally agree (as I do with most everything I hear you "say"!). I believe we need an advocate for us when we are sick and usually, the patient is the worst one to be that. I have a galfriend who saved her husband's life because she was his advocate. He had some stomach drain tube in, put in at a small, rural hospital and the thing infected and he was going to downhill fast. She couldn't get them to act, so she put him in her own car and drove him to a bigger city to admit him, and they said he would have died in 24 hours if she'd not been so active!

I'm sure sorry about your mother. My Dad died 9 years ago and I still tear up when I think of him. You did the right thing to get into somebody's face. Definitely, with a capital D, do we need to stand up for what is right and be our loved one's or our own advocate!! Good for you...tho I'm so sorry about what finally happened.

I also agree that 3 months is WAY too long to wait...but I guess I was responding to those who wanted the results right now. I myself have advised that we pick up our records...but sometimes, it's a different matter to get the results or reports BEFORE our specialist or PCP gets them. I've done that, and it's worked out okay. But I can see how they feel, actually.

Always love your answers and advice here. You gave a great answer to one here today. what you wrote was "enough said," in my opinion.

I have never had a problem getting MRI results. When you get your MRI done ask for a copy of the films to take to your doctor (They have always done this for me - both places). The radiologist generally writes the report within 24 hours. You should ask for a copy of the report or at the very least have them faxed to your doctors and ask your doctors for a copy. It's your body. Keep track of these films and reports as you will probably need them as you go from doctor to doctor to get opinions.

I always tell them I have to take the films to several doctors for opinion (which I do) and they usually give them to me with no problem.

The only important thing to remember is NOT to jump the gun after reading your MRI report. Just because it may seem really bad, it may not be as bad as you think. Every adult over the age of 45 has some degeneration at L5. Just keep it in mind. Many people have degeneration and feel nothing in terms of pain. Sad thing about the human experience is that everyone will experience degeneration of the spine if they live long enough.

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