frustrated with my neurologist

[sunshine008]

hi

how is everyone? So, I had to vent and share...... i was dx'd with ms on clinical exam. Some found it odd yet also i guess it was because my gp did a good job of ruling out a bunch of other possibilties the past two years now. We had me see specialists, and had xray's blood work you name it.

anyway had my mri done on friday. the woman said she'd rush it over to neuro. why she'd rush it?? idk.

so, late friday spoke to liaison and they were just getting it. she said the dr. will call you. i being the obsessive woman i am lol called the special liaison number on monday. they said we have your report, yet the dr has to review the radiologists findings. sometimes the liaison calls back yet i think the dr. will call you back directly.

it's now tuesday no call. i'm glad in a way at least there aren't any tumors, etc. i was expecting the lesions they said i had, and that i saw. which would confirm the ms dx. i guess i'm just nervous about other junk.

so, is it normal to wait this long?? i guess...... i have heard some real nightmare stories about how long ppl have to wait.

thoughts?? how long should i let it ride before i get upset?? i'm timing my upset-ment lol.

thanks you guys

[isamadjul]

just depends

for me and my neuro it depends on why the mri was order...when i was in the hospital it was asap...

other then the hosp the shortest wait i had was 3days...which was my dx mri.

I have a mri june 6th and my followup with neuro on june 16th...and yes it will be the longest 10days of my life

[sunshine008]

yes waiting bites!

I dont' have my follow up until June 24th, so i can't wait that long lol.

i think i'll give it till thursday a.m. than call them like a pyscho woman

that would complete 3 days....... not including weekend

[Justsayyes]

Pattutee?

I think we have the right to know what our tests say ASAP. I'm a pain in the pattutee about calling to get results.....I just can't stand waiting! Don't they realize how stressful that is?

[maximumlite]

I like to know like everyone else but this is what happend when I rushed my results.
My MRI was at the end of Oct 2010 and the Dr. I was scheduled with was a 6 week wait, than he cancelled twice putting me to the end of Jan. so I scheduled with another neuro, in the mean time I had an appointment with the optomologist.

The opto told me at my appt. I had ms because he could pull up my records, all electronic now, his actual words were "you do know you have MS right". Well I went to my neuro in Jan expecting a MS diagnose but he sent me for the LP and evp test, said he would get to the bottom of things.

Never saw him again kept sending me letters saying all test were neg including LP. Finally got a letter saying that it was not MS but lesions from high blood pressure, even though he never asked me what it was running.

I than told my PCP I wanted a second opinion and got set up again with the neuro that cancelled twice but the difference was he was a MS specialist.I went first week of April to see him.

What a great doc. I wished I would of went to him but got in a hurry. I told him my LP was good and he said that was not so that my middle bands were elevated. He pulled up my last 2 MRI's and come in and told me I had MS and that I probally had it for years. He answered all my questions explained MS to me and set up another appt.

I went to see my PCP after that to talk about my MS with him and he told me that he knew for quite a few years that I had MS but had to wait for a neuro to make the diagnosis.
All that hurrying did'nt change the outcome, only created stress.

Knowing now what stress can do to someone with MS, and the everyday stress I was having at the time brought on my first bad flare along with a chest infection. I have made up my mind to just go with the flow now. I think I would rather be flare free than worry about a test that will not change my outcome of this disease.

If it was life threating like when I was having chest pains I would go right into a place as I had my first heart attack when I was 35 and played the wait game.

Just try to relax and not get yourself worked up as that can cause more problems than it's worth not to mention do you want to give your neuro an attitude before you see him, remember he's human also and has emotions

[sunshine008]

hi

thanks for the responses...... i'm still patiently waiting. i'm not freaking by any means yet they've had the report in their hand for days now.

your story is a rough one im sorry you had to get jerked around so much before you knew your dx. horror stories i hear with this ms thing all the time! glad you got the dx and hope you have some meds to make you feel better.

for me i just need something for at night, my leg twitches are coming more frequently now and i can't sleep till like 2 a.m. majority of nights. i don't want to go to my gp and pay more money mine as well get the script from neuro.

i haven't had the chance to be nasty to him. lol i only talk to the office am very nice to them. yet that was early monday and now it's wednesday day is almost done for them and still no call. he has me schedule for an evp test friday that i don't even want to go to either. than a neurotax in two weeks.

my daughter gets home tutored because she was very ill this year in two hospitals etc. so its' hard to juggle the appts here at home.

[mjan]

Well I do appreciate your anxiety as you wait for the results. I know what that's like.

Then the tech saying she would RUSH the results over to your neuro set you up. Unless they find something life threatening, you wait for the doc to give you the results

BUT where I get my MRI's now, I receive a CD disc right away. NOt that you can read them well, but I go back in a few days and get the written report from medical records. NOW reading that report gives you some knowledge BUT its still up to the neuro to give you the final news. The Radiologist makes his "impressions" but is not responsible for the final diagnosis.

So go get the written report and relax. Reading it ahead of time gives you time to formulate your questions for your next neuro appt.

Good luck and WELCOME to MS WORLD

Warmly, Jan

[sunshine008]

what a great idea, thanks! if you hadn't said that i would of never thought of it!

I'll call them tmrw inbetween my running around. i have the cute little cd with all the lesion picks. i know it's ms and i'm ready for that. your right if it was something else id' of heard by now.

the right leg though at night is driving me batty. i've tried some natural remedies yet it isn't working.

thanks alot!

[0485c10]

The mri center will give me a copy of my cd of the mri which is just the raw data that i have bought. but they will not give me the written report of the MRI with interpretations of the raw data on it until the doc who ordered sees it first.

i tried to get a copy of the written report which is availabe within a week of the test...i tried saying i had bought this & they would not budge. they were not legally required to give me a copy of the written report with its interpretation until after the neuro had reviewed it first.

not sure how your mri center handles it, mjan is lucky that way..i just wasn't able to get a copy of the written report until after the neuro had reviewed it.and legally they were able to do that. i have to say the only time i needed to change treatment because of the results on an mri, i got a call the neuro's office the next day, so its pretty timely when action needs to be taken.

if you are calling the mri center to get a copy of the wriiten report & they deny you, you might also want to ask if you can get a copy of the written report from the physicians office..the doc has a his lab test prioritized which ones he needs to look at first--they might not mind giving you a copy before you are able to talk with him about it. I just had no luck with getting a copy before the neuro had seen it. i did get copies after the neuro had seen it for my future reference and i do advise you to do that.