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Old 06-21-2007, 05:40 PM   #1
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Angry Well Saw the Neuro

I must say that after meeting with this neuro I can either be happy that he doesnt think I have definate MS but thinks if he did the spinal tap he could say Possiable MS which would have no treatment options. Or I can be ****** that he said I dont have MS and if I did I would be in a wheelchair more often and that he believes Fibromaylagia doesnt exist and that all I have is arthritis in my neck or spine and am possably having seziures that are causing my loss of balance.

He hasnt looked at my MRI yet and he did a few little test at the office, and of course I had balance today even though yesterday I fell and sprang my ankle.

maybe it is all in my head.. but he gave me some muscle relaxents and wants to see me in 5 weeks.

any thoughts.. I mean when he asked my symptoms I sounded like a blubbering idiot and couldnt think of them, I knew I should have just handed him a piece of paper with them all listed.

so he thinks at 28 I have arthristis and says a spinal tap is unneccassary because he still could only say possiable MS and doesnt believe I have that or the Fibromayalgia that I was told I have because he doesnt believe fibromayalgia is anything but a name doctors give there patients so they feel better.

back to square one and I am so done.

any thoughts anyone?


W0rldflame

 
Old 06-21-2007, 05:50 PM   #2
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Re: Well Saw the Neuro

What a crock!!!! I am sick and tired of doctors that don't want to listen to you. What does he mean that if he did a spinal tap he could only say probable MS. What if the spinal tap shows something, this is a step closer to a diagnosis. I can't stand doctors like this. They don't seem to care. Did he act like he didn't care what you had to say? How can he say anything, he hasn't even looked at your MRI yet!! What test did he do in his office? I'm sorry but this doctor is ******* me off and I wasn't even there. I am going through the same thing. Doctors keep telling me that it is all in my head or I am depressed. They don't want to listen to me. I was even given seroquel at the emergency room one night and was put in the psych ward. I had a reaction to the medication and couldn't get out of bed for 2 days. They treated me like I was some kind of crazy person. I AM SICK AND TIRED OF DOCTORS!!! You know your body and what is going on with you. FIND ANOTHER DOCTOR!! If you find a good neuro that will listen let me know who it is because they seem to few and far between.

Michelle

 
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Old 06-21-2007, 05:57 PM   #3
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Re: Well Saw the Neuro

he went for the depression angle near the end and thats when I got real mad at him and said "look, thats been elimanted I went to the pshycologist just for the benefit of letting my doctor know it wasnt that" I actually got fairly arguementive with him.

he touch my hands with a pin to see if I felt it and had me walk heel to toe which in his small office was 3 steps and I did stumble slightly but he was writting something down after the first step and didnt look. he had me hold my arms up as he pushed down and the only comment he had for my shaky hands was "are you the nervous type?" I was calm... of course my husband piped up and said yea she worries alot. ok lets focus here I couldnt hold my arms up when he pushed on them..

either way "if" its is MS then I am going to have to wait till I wake up one morning completly unable to walk, and I told him that.... that is when he said " You dont have MS" "because if you did, you would be in a wheelchair after 1 1/2 years of this"

maybe he is right and maybe I am making a big deal out of nothing, my husband believes the doctor.

me I am in tears.

 
Old 06-21-2007, 06:30 PM   #4
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lynxgal HB User
Re: Well Saw the Neuro

Hey Worldflame,

DO NOT LET THE DOCTORS GET TO YOU LIKE THIS! I have to keep telling myself this all the time. They make you feel like it is all in your head. I am soooo frustrated with the doctors too.
__________________
~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 06-21-2007, 06:40 PM   #5
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Re: Well Saw the Neuro

I had the pin test too and I couldn't feel it in my big toes. The neuro also did the test where you cross your arms and close your eyes and march in place. When you open your eyes you should be standing where you began. After opening my eyes I was all the way across the room turned in a different direction. He also laid me down on the table and had me hang my head off the table and he turned my head certain ways and my eyes started jerking. He said that something was definitely wrong but he didn't know what. Even if it is your nerves or depression or whatever. Something is still wrong with you and someone needs to listen to you.

Michelle

 
Old 06-21-2007, 06:45 PM   #6
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Re: Well Saw the Neuro

Flame,

Don't give up.

For starters I'd kick that neuro to the curb and find one that has human compasion to treat and give the patient the attention they deserve .

Number 2 this neuro is a quack,theres been many that has had ms and have never been close to relying on a wheel chair.

If this neuro thinks you are having seizures than I'd get on the phone and demand an EEG,this test will definatly help you.

I'd also tell him you want the spinal tap,this test can and will rule out many disorders and can help with a possible dx of ms.

Have you gotten the mri report and read it yourself? Some neuro's are not up front with there patients.

It took me several test and many DRs,4 neuro's,GP,neuro-muscular,electro-muscular,my neurosurgeon,a second neurosurgeon(second opinion),ENT.eye DR.,opthamalogist and a neurOtolgist.

I was DX'd in December of 2006.

I knew I wasn't getting any better,and the majority of my Drs dismissed the symptoms,blamed it on 2 previous lumbar surgeries.

My GP,electro-muscular and neurosurgeon all said MS.But it had to be found and it took 2 years and a very good neuro to add everything up.

When I went and seen neuro number 4 he got bombarded with 3 inches of test results,he reveiwed them with me page by page,it took an hour and a half.he done the standard neurological test and at the end of the appt.he said "sweet heart you definatly have MS" He said it was just hard to find,MRI's were clear of lesions,but I had cortical atrophy,left from past lesions.Evoked potentials were borderline abnormal,LP had no O-bands but the myelin basic protein was extremely high,IgG synthesis were high and so was the albium ratio.

I had ringing in the ears and off balance seen an ENT and NeurOtologist and had a VNG and it came back for lesions near the brain stem and the left hemisphere.Through this test they also discovered INO/BINO a form of nystagmus mainly associated with MS.

You just have a crappy neuro,you know how you feel,din't give up on the medical community,theres great DRs out there.You need to find the cause of these symptoms for you and your family.

 
Old 06-21-2007, 09:20 PM   #7
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Re: Well Saw the Neuro

thank you...

I dont even know how to get a copy of my MRI report, I think they will only release it to the doctor.

he also said that the ringing in the ears was do to the "arthritis" in the neck.

thank you very much for your help.. and helping me not to feel crazy

w0rldflame

 
Old 06-21-2007, 09:36 PM   #8
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Re: Well Saw the Neuro

If you go to the MRI imaging center and request a copy of the mri report,they can not deny you,these are services that you had already paid for.You may have to pay a couple of bucks for them to copy it,but you'll have it for your own records.

As far as the ringing in the ears did the neuro or an ent tell you that?

Did they do a c-spine MRI to say you had arthritis in your neck?

You are not crazy,no one here thinks that,you just got sucked into that crappy neuro lottery pool,keep searching,I know its bummy when a medical Dr treats patients badly.I had my shares of DR Nasty's.

 
Old 06-21-2007, 10:55 PM   #9
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Re: Well Saw the Neuro

nuero told me that the ringing was due to arthritis in the neck.

as far as an MRI on the spine, no they have not done one and I asked him 2 or 3 times in the visit if it could be spinal, he said an MRI of the spine wouldnt show anything because for 40% of people who have an MRI of the spine it will show something and wouldnt mean anything.

my husband was there and I just looked at him like what the ____blank_____ I mean does he think I am stupid, I mean I am sure that happens in some cases, but this nuero said it would be to expensive to run a test that would be unneccassary and shows things wrong in healthy people who have no previous complaints... so yea, thats how the visit went lol

 
Old 06-22-2007, 05:25 AM   #10
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Re: Well Saw the Neuro

Flame,

Restart your process of seeking a DX.

Find an orthapedic or neurosurgeon for your neck,No neuro is gonna be able to say arthritis with out proper x-rays or mri's.

Starting over for a Dx can be a rough road,but rewarding in the end.

This neuro your seeing,does he have a medical degree.He's not a very good DR.

Don't give up!!!

 
Old 06-22-2007, 10:32 AM   #11
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Re: Well Saw the Neuro

lol, yes two that are on his wall in-fact..... one out of the country and one from the U.S. at least that I can tell since the one degree was in latin or something so I couldnt read it.. But again thanks.. at this point the only supporter I had; has decided to believe the doctor because he "made so much sense" .

I believe this supporter doesnt want to find out that I really do have another problem.

And to all who answered I again thank you, this is an extremly hard place to be. I Know my PCP will be made when I tell her that the Neuro said Fibromayalgia is a farce

 
Old 06-22-2007, 01:42 PM   #12
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parisiancat HB User
Re: Well Saw the Neuro

He didn't even look at your MRI? That's crazy. You should get a copy and take it to another neurologist.

You deserve much better care than this doctor is giving you.

Cat

 
Old 06-22-2007, 08:42 PM   #13
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Re: Well Saw the Neuro

Ya know anything can be copied from the internet(lol)

Call your PCP and have her get the copy of the MRI and ask for a referral to a new neuro or even a neurosurgeon for your neck.

Please get that neck checked.

With the right Dr.He or She can get the ball rolling for you.

Heck it was my electro-muscular DR that kicked some of my Drs in the pants to get things rolling.

When she ordered MRI's and a week later they were not read,she excused herself and said she would be right back.She left her office walked across the street and raised cane and read them herself.She had been a military Dr.I knew then I was in good hands.She still calls periodically to check to see how I'm doing.

There's great DRs out there.

 
Old 06-23-2007, 12:53 PM   #14
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w0rldflame HB User
Re: Well Saw the Neuro

Maybe I should move to Ohio lol

 
Old 06-23-2007, 02:55 PM   #15
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Re: Well Saw the Neuro

My Neuro tested everything ELSE on the planet before he finally got to the spinal tap... thus I knew I didn't have a host of other things. The spinal tap was the final "we've ruled everything ELSE out" test that ended up affirming, yep, I had MS. Oddly enough both my regular doctor and Neuro were pretty darn sure all along the way that MS was what I actually had, so I was pretty prepared for it.

Sorry you are having so many problems with the diagnosis. :-(

 
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