okay, am i totally losing it? i went to the neurologist on monday july 25th, she ordered mri of head/neck with contrast didn't think it was ms, but wrote down rule out ms so insurance would pay. went for my mri on tuesday august 1st. never heard results this week. symptoms still come and go. today friday i get a notice from doctors office about a MS seminar on august 16th, if you are newly diagnosed or have been living with ms, come to this seminar.
is this a friggin joke? did someone make a mistake ? do they tell you via flyer that on monday i'm going to be diagnosed with ms? of course i tried calling the office but they close at 4 p.m. on fridays. i've been in panick mode for three days waiting for doctor to call with "bad results" and today i get a flyer about MS.......
okay kind of freaking, god glad it wasn't a flyer about terminal cancer. rather ms then that but if something was up with my mri wouldn't most people call or say, hey bring your dh with you on monday or hey we need some more tests or are they just going to spring this on me on monday. i'm just blown away. i didn't want to call and get my results because i didn't want my weekend blown. i actually felt pretty good today. shoulder/arm stiff today and vertigo comes and goes but...WTF????????????
thanks for listening to me gripe. god, i hope i'm not terminal.
karen nurse who should probably change to a more positive profession without all this dam knowledge that i have.
Posted by Lymetoo (Member # 743) on :
That's probably typical, sorry to say! If they found lesions, they'll dx you with MS....never considering Lyme disease.
I would keep READING here so you are armed and dangerous on Monday!
I think Wild Condor has links about MS and Lyme.
Posted by pattilynn (Member # 8065) on :
That is just so wrong.
Was it addressed to you specifically or one of the general flyers sent to many people?
I know what you're going through. I've been going through this for over a year now. I'm holding my breath after each test.
I hope it's just a coincidental flyer.
Is there any way you can get your results before next week?
Posted by mlkeen (Member # 1260) on :
It is likely to be because your bill was tagged with as a MS eval or it could be sent to all, you did go to a neurologist and he probably has many patients being eval or treated.
Posted by seibertneurolyme (Member # 6416) on :
I think you just got on a mailing list from the doc's office and it has nothing to do with your MRI test results.
Bea Seibert
Posted by Littlesprout (Member # 7406) on :
Well, if you get dx with MS, maybe your ins will pay for IVIG under that dx. I saw Dr K in CT last yr. He is very big on high dose of IVIG for neuro Lyme.
The IVIG will make you feel better. Let them call it what they want, just don't do the MS drugs. Even Dr K doesn't like Copaxone, he says the side effects are too bad.
Posted by Carol B (Member # 9110) on :
Sure can relate- i just went through a similiar experience-with a similiar reaction-freaked out-but I'm ready to face whatever now and more able to advocate for myself.
I had an MRI of my spine and waited for results, finally called only to find out my doc was on vacation, so the doc on call gave me a rushed over the phone reading of the results-and then the only option he offered was the phone number for a neurosurgeon !!!! Scary.
Of course i didn't understand anything he read to me-it was all so technical. anyway Monday I am going to go pick up a copy of the results myself.And i have talked to several people about alternatives to back surgery.
I have two appointments coming up-one is with the neurosurgeon-and one is with an orthopedic surgeon whom I am told does not favor surgery unless absolutely necessary.
Anyway- yes I know the freaking out state of mind-so I posted right away on here-to get things in perspective.
My feeling is that the MS flyer was a coincidental occurrence, mass mailing to any prospects, and not generated by the results of your MRI.
One thing with lyme is you learn to become your own advocate.
Breathe, deep slow breaths, Carol
Posted by bettyg (Member # 6147) on :
I also think it was a coincidental mailing since you were just there with a MS tag for your MRI.
I do know what you mean. I had hubby see a neurologist for his 24/7 tremers of hands/arms and his feet/legs. MD called it "essential tremors". RX meds would make him worse like Michael J. Fox's shaking we see on tv.
Several days later, I received a letter from the MD's office talking about ALS, Lou Gehrig's disease, and telling me I could contact someone at phone no., etc. I lost it!
I called the MD personally about this; went to the WRONG PATIENT who wasn't named anything like my husband. I took the wrong report into them.
Later one of his co-worker MDs talked at Parkinson's meeting I went to. I told him about the mixup and he couldn't get over it.
Human error at its worst. Sure got me worked up fast. Our letter was received at end of work day & I was lucky to catch anyone in the office to talk to. Bettyg ...best wishes! PRAYING FOR YOU. Posted by Michelle M (Member # 7200) on :
Not to worry.
If something really GRAVE was wrong on your MRI, someone would've almost definitely already called you.
Your doctor is UNLIKELY to dx you with MS based on an MRI alone anyway. So you are worrying over nothing. Even if there was evidence of some lesions (common in lyme), he'd usually still want you to do the whole shebang -- nerve conduction testing, lumbar puncture, etc. before making any ominous pronouncements.
Monday your doc will probably say, "There, there, your MRI is just fine.. You don't have lyme or MS... Take some [insert duck-prescribed drug here, i.e., antidepressants, anti-anxiety meds, hormones, etc.] and recheck in a month."
But you're going to find an LLMD. Right?
Now, stop worrying. Keep us posted, but know that your "date read" on your MRI report by the radiologist will be the date of the MRI or the next day.
Hope you have a good weekend and put this elsewhere to worry about!
Michelle
Posted by firepipersnurse (Member # 9637) on :
thanks you guys....you are the best and the only group of people who seem to understand where i'm coming from.
since the symptoms were so insidious i kept putting off going to the duck because i kind of felt like i was imagining somethings. since my mri, i've been on edge thinking what are they going to find and then yesterday's flyer put me into high anxiety.
thanks for the support. karen
Posted by cbb (Member # 788) on :
I also think the mailing was not a result of your MRI. Try to relax & enjoy the rest of the weekend.
If you're going to be evaluated by a LLMD, you should start getting copies of your tests for him/her to see. Very important!
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