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JenniLee

Active member
Joined
Mar 19, 2007
Messages
38
Reason
PALS
Country
US
State
CT
City
NORWICH
On Wednesday, 4/12/07, I will be going to Columbia University to see a specialist on a second opinion. My fear is 1) he will only look at tests I've had done and give a diagnosed., and 2) he won't consider other possibilities.

Here is where I'm at now...

slowed speech, left hand finger-tip weakness, some minor left tricep weakness, slight heaviness of left foot, muscle twitches at rest (all over).

Tests done so far: blood work (including heavy metals), MRI of brain & c-spine, EMG (abnormal) and a CNE (concentric needle EMG) (slightly abnormal).

So, given that, what tests should I urge the Columbia doc to do?

Whatever you ideas you have would be helpful.

Thanks,
Jen
 

Meg1

Distinguished member
Joined
Jul 5, 2005
Messages
118
Hi JenniLee, I wondered where you went.

In general, I wouldn't fully trust a second opinion from a place that didn't perform their own tests. The test administrator's skill is probably THE primary determinant of the quality of the EMG and I wouldn't believe an ALS doc who simply relied on someone else's report. You may want to call in advance to confirm that this is the what will happen at your visit to Columbia.

As far as what tests you should urge the doc to do, I'm afraid the process just doesn't work that way. You should be seeing an ALS expert who will decide, based on his examination of you and your test results, what additional tests he needs to do to rule out (or in) other diagnoses. Sometimes the exam or EMG test is ambiguous and further tests are needed, sometimes it isn't. Some people have classic ALS signs, some don't. You just have to trust the person rendering the opinion. If you don't trust this person or Columbia (which is what it sounds like), you need to find a place you can trust.

The process of diagnosing a disease as complicated as ALS is not something you can teach yourself by reading internet posts and it does not lend itself to checking off boxes on a form. I think it's a good idea to familiarlize yourself with tests others have had done so that you can ask your second opinion doc why he doesn't believe you need a particular test/exam/procedure (if that's what he tells you), but I highly doubt an ALS expert will perform a test he doesn't think you need because you tell him you want it done. Although ALS is a diagnosis of exclusion, there are loads and loads of diseases that are never tested for when one is in the diagnostic process. The ALS expert will use his expertise to determine which other diseases match your symptoms sufficiently that they must be tested for, and that list varies from PALS to PALS.

Good luck.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I went to columbia in 04 with just slurred speech and the MD asked for a new MRI EMG And blood I never went back I showed him all my test and they were all recent, Because they were normal he wanted his own. He did say ALS ,he was the first md in 5 years to give me a possible ALS Good luck Pat
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Most of the tests that I had required preauthorization from my insurance company which I'm sure influenced which tests the doctor ordered (i.e. - those he knew he could get approved). I could not have gotten a second EMG when I went for my second opinion with the ALS specialist unless I paid cash. The specialist didn't feel it was necessary anyway because my physical exam was "classic" for ALS. Keep in mind that this was 2 years after symptoms started and many other possibilities ruled out. I wasn't even thinking about ALS until about 2 months before my diagnosis when I noticed symptoms spreading.

Liz
 
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