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378497 tn?1232143585

Oh, an update, I guess

Looks like lots of new people, lots of new diagnoses, and a few bad neuros tossed in. The usual, really... ;)

I just had new NCT/EMG testing done on all four limbs. All normal. A possible borderline ulnar neuropathy left hand, but nothing that just screams neuropathy, which surprises me, given how freaking dead numb I get along the ulnar distribution over there. And in spite of the fact that I've thought for at least a couple of years that I have carpal tunnel in my right hand...I do not. Nada.

I have a 3T MRI scheduled for Mar 12...t spine and brain, no c spine. I won't go into what I had to do over the course of a week to get the 3T MRI people to make me an appt. It was ridiculous. But I have one now. With contrast. I'm concerned that my cspine isn't in there, too, but at this point, I don't want to do anything to undo this plan because...

I have a 2.5-day appt at Methodist in Houston starting 3/16 with a high-profile neuro whose specialty is motorneuron diseases. I figure that if they think my cspine needs investigation, they'll investigate it. I think it does, considering the Lhermittes. I've had a 1.5T on it that showed nothing. We'll see. I'll also be seeing my THIRD neurosurgeon there because my neuro (neuro 2) thinks that I need a THIRD opinion since opinions 1 and 2 didn't exactly agree at first (although they do now).

Other than that...nothing new. I have pain every day. Stiffness every day. I walk funny. I'm tired. My left thumb moves around by itself. Wahoo.

Bio
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195469 tn?1388322888
Hi dearheart.  You something girlfriend, I had Nerve Conduction studies and Electromyography on BOTH hands back in 1991.  I had all the typical complaints of Carpal Tunnel Syndrome.  Boy night time was the worst, also hurting just to hold a magazine or hold the steering wheel.

My Orthopedist at the time, got the test results and said, "Heather since I have operated on your before for your shoulder and elbow, I know when a patient is coming to me with text book complaints about carpal tunnel syndrome.  I am not going to pay any attention to these test results and set up surgery for you anyway.  He did my left hand first, which is not my dominant hand and said that the tunnel was so tight the nerve was smashed and couldn't move.  On the right hand, when he operated, he said the nerve was so trapped that he didn't know if the carpal tunnel release would alleviate all my symptoms.

So there you go...the EMG and NCS were totally normal and look what was found when the surgeon opened me up.   I do NOT put ANY faith in alot of those tests, that test for nerve damage or compression.  Negative test results have occured with more than one of my orthopedic operations....

Heather
Helpful - 0
378497 tn?1232143585
Thanks, all. Udkas, the going choices right now appear to be primary lateral sclerosis (not good), primary progressive multiple sclerosis (not as bad in that context), or some ridiculous mix of things involving herniated discs, non-existent carpal tunnel, Lhermitte's of unidentified etiology, a tspine myelopathy, and several t2 brain hyperintensities. Abnormal neuro exam including hyperhyper right, hyper left in lower; hyper right, normal left in upper, +rombergs, Babinskis, Hoffmans, spreading reflexes...blah blah blah. I'm collecting signs. Symptoms? Glad you asked. Stiffness, pain, paresthesias, primarily right foot and hands.

MS, anyone? Sigh.

Bio
Helpful - 0
405614 tn?1329144114
Hmm, I wonder if there's a seasonal component.  Last February when I joined the forum, we had almost weekly weenie roasts, often with several neuros up for roasting.

I was thinking about your MRIs; maybe you can sweet-talk the tech into imaging your brain well down into the cervical, and starting you thoracic well up into the lower cervical.... Yeah, sure, you bet.  

Oh well, like you said, maybe you'll get the c-spine done while you're having a hot time in Houston.  Uh, are you going to hitchhike there; is that what your thumb is practicing for?  Excuse me, I'm a bit goofy today; better than grumpy, I guess.

Kathy



Helpful - 0
Avatar universal
Thanks for the update, I never knew your story, and I was wondering if you had a diagnosis etc.  It is nice to put a profile to the person, if that makes sense.

Best of luck with your up coming appointments, I hope you get some answers.  I am lucky as all our MRI machines where I live are T3. You would think if they are doing your thoracic that they would do your cervical....

Have they given you any ideas to what they suspect is wrong with you? Theories etc.? I can relate to how frustrating it is to have a test result come back normal when you don't feel normal (like your NCT/EMG), I am now hoping that my NCT/EMG might shed some light on things for me. After talking to you and a radiographer I am friends with I have decided that my problems are not back related (which is what my neuro tells me)....

Best of luck, hopefully the T3 might bring some answers for you

Oh and on neuro's I must be one of the lucky ones as mine is lovely, he listens and tells you what he is thinking, answers your questions, and seems to care, seems pretty smart too...lol, they are not all bad.

Cheers,
Udkas.
Helpful - 0
293157 tn?1285873439
hi there... I'm glad your getting your MRI done on a T3... they are hard to get too.  you know my finger moves by itself once in awhile... it just moves sideways...I don't know why it does that... only lasts 10 min of so..and only once in awhile..

let us know how it goes...

ttyl
wobbly
undx
Helpful - 0
378497 tn?1232143585
"Looks like lots of new people, lots of new diagnoses, and a few bad neuros tossed in. The usual, really... ;) "

By this, I meant here on the board. I can't believe how many people are (a) getting diagnosed with something, and (b) running into the world's most obnoxious neuros.

Bio
Helpful - 0
279234 tn?1363105249
Sorry to hear things haven't change for you...but I hope that this time around you get some answers. I'm really happy for you that you are getting looked at on that 3T. I'm so jealous!

Maybe everything that you went through to get on that 3T, the answers you get from it, will make it all be worth it.
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