How were you told of your Dx?

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How were you told of your Dx?

Postby momofsix » Thu Dec 19, 2013 2:50 pm

My neuro called after my MRI brain and LS spine. Despite the fact that I saw the films and read the report (didn't seem too significant other than some tumors on my L5 and S2 and S3) she called and asked me to come in on Christmas Eve to "talk." This is the first time in six years that she has done this. I am worried to say the least. Should I be? How were you all told? In person or over the phone? A letter? Just curious?

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Re: How were you told of your Dx?

Postby jimmylegs » Thu Dec 19, 2013 5:47 pm

for me it was in person. there was this intense problem solving week where it seems like I was with my neuro all the time, then a bit of waiting for some test results, and then we met in the café at the hospital and he told me his dx was ms. and then he sort of went back to his office and I sat there by myself feeling like a spider that just had its web ruined. if that makes any sense. then I went to the bathroom and I am pretty sure I cried there for a while. and then I got a ride home. and later had to go see another neuro to have the dx confirmed. it all happened really fast. which is a plus compared to some folks' long waits for answers!
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Re: How were you told of your Dx?

Postby lyndacarol » Thu Dec 19, 2013 6:57 pm

I received the diagnosis over the phone from a nurse in the doctor's office – not even from the doctor himself! When I hung up the phone, I melted down and cried and cried and cried. Then I phoned my husband at work. He was HOT! He called the doctor's office, insisted that we were coming immediately to talk to the doctor in person; so we saw the doctor and told him we did not appreciate the way this news was delivered!

Then, I immediately changed to another neuro.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: How were you told of your Dx?

Postby amberfer » Thu Dec 19, 2013 7:16 pm

My neurologist told me in person, but we'd had a follow-up scheduled anyway, so I didn't have any worries beforehand. My husband wasn't able to drive me that day, so my mother-in-law was there (I asked her to be in the room with me.)

My jaw dropped open when the neuro told me, and my MIL gasped and said "Oh, Amber" and got teary. My neurologist asked, "Does this dx surprise you?"
I said, "You'd already told me it might be MS...but just the fact that I actually have something and it's not in my head (like I'd thought for months) is shocking."

I carry just-in-case Xanax for occasional panic attacks. She asked me how I felt and I said "I don't know. But I think I want to take a Xanax." She said I definitely should, so I did. Then I half-slept while the nurse went over disease modifying medications and my MIL took notes. She wheeled me out of there; we went to Spaghetti factory and I drowned in carbs, I called my husband at work and told him, I soaked it all in. Everyone else cried for me but I couldn't cry until a few days ago.

I can't think of anything to comfort you, because honestly, you know just as well as I do. But I can tell you...this isn't a death sentence. A lot of people forget they even have MS because it can be managed so well. It is frightening and it can modify your life; that is what I'm struggling with right now. But when I first heard the diagnosis, I reacted as if it was cancer or something. It's not! I pray that you find out what is causing your symptoms, and I pray it's not terrible. Please update when you have your appointment!
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Re: How were you told of your Dx?

Postby Serapis » Thu Dec 19, 2013 9:51 pm

My neurologist told me in person as well.
made me a cup of tea before which was actually the best thing to do. It left me in a daze for the next day or so before i actually started looking at my symptoms and life to that point and realising that i had pretty much been dealing with this for about 4 years prior. Shook me something terrible.

From first admittance to diagnosis took about 4 days, which on the AUS health scheme was bloody fast
Onto Betaferon within a week, now onto tysabri

Both a blessing and a curse it being so quick.
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Re: How were you told of your Dx?

Postby amberfer » Thu Dec 19, 2013 9:58 pm

Oh I hear you about the blessing of a quick diagnosis! For me, it was about a month from the ER visit till the tests confirmed my dx, and that is still considered really quick! Drinking tea right now =)
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Re: How were you told of your Dx?

Postby Serapis » Thu Dec 19, 2013 10:01 pm

all day everyday,
even with the 42 degree days here(celcius)
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Re: How were you told of your Dx?

Postby CureOrBust » Thu Dec 19, 2013 11:20 pm

First mis-diagnosis ta around 27; one of a few to follow. Final actual diagnosis at 35 after a change in Neuro's. At first visit he told me his suspicion after I pushed, when I noticed he was taking the last diagnosis as a fact.
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Re: How were you told of your Dx?

Postby mmpetunia » Wed Jan 01, 2014 12:26 am

let's see...

i had a bike accident about 3 years ago. a few months later i started to get strange symptoms on my shins. i attributed it to sitting in yoga on the hard floors. then, a few months after that i developed really severe lhermittes. since i had the bike accident i had been dealing with ongoing back and shoulder pain. the docs assumed the pain and tingling was because of the accident compressing a nerve somewhere and i had been put on medical leave at work for 6 weeks. then i hurt myself at work about 10 months after my initial bike accident. only then was i finally given an MRI because now my hands were tingling too. the workers comp doctor was a special type of evil. i'm trying to let go of my anger towards her...

the appointment for the MRI results went something like this:

"blah blah blah, i think you're faking blah, blah, blah..."

after she was done treating me like a malingerer i asked her for my MRI results. she said "oh i haven't seen them yet either, let me grab them." she comes back into the room reading through the report and says "hmmmm, it looks like your discs are fine but you have demyelination in your spinal cord, you should see a neurologist to get tested for MS. do you want a copy of the MRI report?"

um, WHAT?!?!

yep, she never accused me of faking my symptoms again. but she did try to convince me that i didn't hurt myself at work. repeatedly. at every appointment. sometimes getting a second doctor to come in the exam room with her. ugh.

from there, i went on to a neurologist and got complete scans with and without contrast for a diagnosis, and a second opinion at UCSF to confirm my dx. once i got the MRI's it was a slam dunk--clinically definite, and took less than a month from start to finish. i just wish that i would have had some type of heads up that it could be MS. i had no warning at all and coupled with the callously delivered MRI results i am still not over the shock of being diagnosed 2+ years later.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
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Re: How were you told of your Dx?

Postby saimamom » Thu Feb 06, 2014 2:37 pm

My neuro told me I probably just had a pinched nerve. But I told him it was MS. Then my brother (who is a physician who treats MS) confirmed that he suspected it was MS. I developed optic neuritis and the physician who did that testing confirmed MS. Finally my neuro confirmed it as well.
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Re: How were you told of your Dx?

Postby RuralLaundry » Sun Jun 08, 2014 4:55 pm

I kind of figured it out on my own, I have not received a formal diagnosis but the tests and symptoms indicate MS so I assume it's correct. I am not at a point where I am willing to treat for it using DMD's or other meds so I am taking lifestyle changes to try and fix things. No need to have a doctor tell me at this point.
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Re: How were you told of your Dx?

Postby Linnibel » Fri Jul 11, 2014 9:22 pm

I had a bout of optic neuritis, (& suspected as much) then went to an optometrist (for differential diagnosis) & he found no reason for central vision loss, so I went to my GP to get confirmation of my suspicions. He didn't think that MS was likely, but referred me on to another doctor, plus a neuro & off to an MRI. Lesions were there, but not enough to meet the McDonald criteria (1 lesion short). Three month follow up showed no new lesions, so still no official diagnosis at that stage, then 12 months later the next MRI showed enough lesions to meet the criteria, complete with Dawsons fingers. I knew within myself all along, so when my Neuro told me, I think that he was a little surprised at my lack of emotion to the news. The second doctor that I saw was the first to receive my first MRI results & he looked so upset when he told me.... poor thing! I felt sorrier for him than I did for myself at the time!!
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Re: How were you told of your Dx?

Postby silverbelle990 » Mon Oct 20, 2014 8:11 am

I was told over the phone at work!! Needless to say i broke down crying in fron t of all my coworkers and my boss. I told them that i had to leave and they were all being so nice I was sooooo embarassed!!!

I also changed Drs. after that. No one should be told over the phone even if you know you are being tested !!!!!!
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Re: How were you told of your Dx?

Postby lyndacarol » Mon Oct 20, 2014 8:21 am

silverbelle990 wrote:I was told over the phone at work!! Needless to say i broke down crying in fron t of all my coworkers and my boss. I told them that i had to leave and they were all being so nice I was sooooo embarassed!!!

I also changed Drs. after that. No one should be told over the phone even if you know you are being tested !!!!!!

I am with you 100%, silverbelle990!

At least I got the phone call at home, not at work in front of coworkers. But the result was the same: I melted down in tears; I changed doctors after that, too.
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Re: How were you told of your Dx?

Postby Ejonesbowlie » Mon Oct 20, 2014 9:40 am

Well, I was "officially" diagnosed about a month ago, but suspect I have had MS since my 20's due to some strange, unexplained neurological episodes.

Fast forward to age 44 yrs...I had an exercise related injury that was not healing, so was referred to my first neuro by my podiatrist. He was a complete disaster. When he first saw me he was "convinced" I had MS based on my symptoms alone...right leg/foot weakness..spasticity...so then sends me off for an MRI and it came back "negative" for MS. Then I was off for a lumbar puncture and was told that was "negative" as well. So now it was no longer MS..had to be some other rare neurological disorder? Talk about stress!

Obviously I did not feel comfortable with this guy, so requested all of my test results and off I went to an MS Specialist. Oh and prior to seeing my new neuro...imagine my surprise when I read through my test results and saw that my lumbar puncture was "positive"...I had 9 oligoclonal bands and an elevated Igg index. Granted I am not a Dr., but every MS site I had visited indicated that these were major indicators for MS. So not to rely just on my internet Dr. degree...I had my new neuro take a look and guess what...yes, my lumbar puncture indicated MS. Not only that, the MRI I had done..by my first neuro.. was not done correctly. Apparently, the "MS protocol" needed to be followed and it was not...so off I went for another MRI. This time, brain/spinal lesions were visible and that was that...I "officially" had MS.

So, that is my story. I now have a great neuro and I'm getting treatment. But man...talk about stress for many months...not having a clue what was going on...all thanks to one careless Dr. Lesson learned...trust your gut and get a second opinion immediately if a Dr. doesn't feel right.

I am certainly not happy to have MS, but in my case the months of not knowing were even worse :-(

Beth
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