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OHDaughter

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Joined
Oct 30, 2017
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4
Reason
Loved one DX
Diagnosis
10/2017
Country
US
State
OH
City
Athens
Is a spinal tap often recommended to help confirm ALS (i.e., rule out other possibilities)? Does anyone have any resources regarding the use of spinal taps to successfully dx or rule out ALS?

I am trying to find info to help my PALS make a decision about getting a spinal tap. Very quick background: He was referred to a neurologist for a head pressure/pain issue by his GP after a brain MRI came back clear. The neurologist found him asymptomatic of anything except for a minor hand tremor, conducted an EMG and was shocked by the results (incongruent to his physical exam). He was then referred to a university-based neurologist who also conducted an EMG, prescribed an additional MRI (neck/spine), ran additional bloodwork, and dx him w/ALS. We sought a second opinion at a larger institution and he is awaiting additional bloodwork results and we are supposed to schedule another EMG and we discussed the option of also scheduling a spinal tap at the same time.

Since a dx of ALS seems likely, despite the fact that ALS symptoms did not drive us to that dx, I am trying to ensure that there aren't other avenues we should explore to ensure the dx is valid. Assuming this last round of bloodwork also comes back clear, I can't decide whether a spinal tap is prudent because we want to exhaust all other possibilities or if it's ridiculous because he doesn't have any symptoms/indicators that may indicate there is an infection/inflammation.

I would appreciate any and all advice! Thank you!
 
I should also note that the 2nd opinion neurologist did not bring up the spinal tap; I did. After I inquired about whether it would be a useful tool in this situation to help with the dx, he seemed somewhat indifferent but discussed a study he was conducting where IF my PALS was interested in the spinal tap that he would like to invite him to participate in that study (the PALS choice, no pressure). Ultimately we all agreed that first we should see what the bloodwork results were, and the doctor did want him to do another EMG, and he said if he wanted to do a spinal tap to ensure there was no infection/inflammation that we could do it at the same time (same trip, that is) that we did the EMG.
 
It sounds like it is unlikely to give you a different answer unless the bloodwork leads that way. However, I understand what you are saying about leaving no stone unturned

Separate from that if he is willing the research part of it would be important. There is hope for a biomarker that could speed diagnosis and spare the uncertainty that many go through. They have learned a lot from the spinal fluid of PALS
 
I think getting one is a good idea. We asked specifically to have Lyme disease tested for in the spinal fluid as it is more accurate then a blood test. Like your PALS the doctors saw little or no signs of ALS in me prior to the EMG. But when all blood, spinal, mri and other test showed nothing, then they did the EMG they were shocked by how convincingly the EMG pointed to ALS.

The thing to remember is that all the physical test are based on a "base line average" so in my case for example; I knew I had a breathing issue, but my first FVC (breathing test) said that I was 170% of what was expected of me (that's 70% better then expected for my age and size). It took 2 years to get a diagnosis but with in 6 months after diagnosis my diaphragm (according to some x-ray test) had all but stopped working. The same are true for leg, arm, and other strength test, it all depends on where you start.

By the way, I live with the head pain everyday. I have been told that it is related to CO2 build up in my blood due to the breathing issues. When they do the FVC make sure they do it both in the sitting and laying down position. For some reason most doctors do not do it prone but the difference in the two numbers can tell a lot.
 
Current terminology is "lumbar puncture" if you are being politically correct:mrgreen:.
It seems to fall into protocol of MND testing now days. It was one of the last procedures they did on me before my EMG. The screening neurologist said it was to check various protein levels and to see if blood cells were present in the fluid.
 
I would definitely get the lumbar puncture.
 
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