Is spinal tap really necessary

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ccox

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My mom is going to see an ALS specialist with a diagnosed of ALS from her neurologist. He did all of the tests that are listed in a book I have about Motor Neuron Diseases except a tap. My poor mom has been through the wringer and I wonder what they could possibly find in a tap that would tip the scales away from and ALS diagnosis. She seems to have a textbook case of bulbar ALS. She's very afraid of a tap (heard stories that it's very, very painful). So, in your opinion, do you think it's necessary with all the other tests pointing directly at ALS?
 

Mary Helen Barr

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I don't know how necessary a spinal tap is, or what they look for. My father was participating in an ALS study, and had many spinal taps for it, and he didn't think it was painful at all. I actually watched the last one, because I kind of had to hold him in position for it, and it was hard for me to watch, but it didn't bother him at all. With all the things you have to worry about, try not to worry about the spinal tap. I suppose you could refuse it if you aren't satisfied with the doctor's reason for it.
 

liz

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I did not have a spinal tap. Seems like that would make more sense to do if symptoms were legs onset - but I'm no doctor.

Liz
 

CindyM

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My tap was painless but I've heard differently from others. The secret seems to be in laying still for an hour or so afterwards and taking it easy the next day. If your Mom has the tap make sure she takes it easy afterwards. Cindy
 

jean

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Because there is no specific test for ALS, many tests are done to exclude other conditions. The spinal tap is one of those tests. I didn't find it a bad experience and Cindy is right about lying down for a while afterwards and taking it easy for the rest of the day.It helps towards not getting a headache after the test is done.
Best wishes
Jean
 

Omar

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I was always afraid from doing the spinal tap, even a friend of mine went with me to the hospital but it was not painful at all and then the Neurologist told me that the percentage of having a headache afterwards is 10% only and if so it is good to lay down on my back and to drink lots of water.
Later on that day I went to a restaurant and I couldn't eat because of a horrible weird headache, so I went back home and laid down for 5 days. It was a horrible week.
But I advice you to go for it as long as it may help them ruling other diseases

Omar
 

bdyle

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I agree with Cindy, I had the spinal tap done and felt only a little sting. Later that night I had a slight headache and after that no more problems.
 

ltr

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A spinal tap is very important during a workup involving neurological symptoms. It can show several different disorders and many of which can be treated. These disorders can mimic als. It may be uncomfortable for a short time, but that is well worth getting a diagnosis other than als, which is possible. Check out this site on spinal taps. It details quite a few disorders that can be diagnosed from the study, all of which can mimic als.

http://www.nlm.nih.gov/medlineplus/ency/article/003428.htm
 

Al

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The actual tap takes maybe half an hour then you should lay still for at least an hour and take it real easy for the next day. No lifting, exercising or bike riding etc. If you do get a headache , Tylenol helps.
AL.
 

Kewanee

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ccox said:
My mom is going to see an ALS specialist with a diagnosed of ALS from her neurologist. He did all of the tests that are listed in a book I have about Motor Neuron Diseases except a tap. My poor mom has been through the wringer and I wonder what they could possibly find in a tap that would tip the scales away from and ALS diagnosis. She seems to have a textbook case of bulbar ALS. She's very afraid of a tap (heard stories that it's very, very painful). So, in your opinion, do you think it's necessary with all the other tests pointing directly at ALS?

I just had a person that represents ALS in my area call and told me that the reason for getting EMG's ect. to get a firm diagnosis even tho they feel sure that it's ALS....is for insurance purposes. Yep. So certain things that may be needed, say equip. won't be refused because of not having the diagnosis firmly in print.

We did talk about two opinions who thought ALS may do it. Another good Neuro. who thinks yes. may be all that is needed?

I'm so sorry. I'm wondering about my mom right now.

Kewanee
 

midwestgirl

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My mother has never had a spinal tap, so this post has gotten me thinking - how important to have a spinal tap if there is already an ALS diagnosed? My mother was first diagnosed with foot drop, currently in a wheelchair with neither leg functioning well. The ALS diagnosed came when mom started with the speech slurring and swallowing problems and the neuro did an EMG, which showed positive for ALS. The last visit she had quivering in her arms, but so far great arm strength, and breathing is fine.

I don't want to put her through unneccessary tests, especially is they may be uncomfortable. It seems like a spinal tap is done mainly in patients without an ALS diagnosed, or questionable symptoms. Thanks for your thoughts!
 

patricia1

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Spinal Tap

Hi If she were my mom with a DX of ALS I would not get a spinal tap.It is no big deal But whats the point. I had one because I had normal EMGS MRI and blood test with just slurred speech So they were looking for infection, Lymes and other tick diseases . I am sure it will only stress out your mom. The doctors are only CTA if you know what I mean. I prays to mom Pat
 

CindyM

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You know Pat, I think I agree with you. The poor lady has enough on her mind at this point. Good point. Cindy
 

midwestgirl

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Patricia and Cindy,
Thank you for your opinion. I really didn't think a spinal tap would be necessary, but I certainly wouldn't want to NOT do something that should be done. This disease is so crazy - everyone presents so differently. Every once in a while I get a "what if" feeling - what if it isn't ALS, and there was a test that should have been done, and there was a treatment that wasn't done!

Mom has classic ALS symptoms BUT so many diseases mimic ALS, I just want to do everything possible for her. We all just have to be good advocates for our loved ones - and ourselves!
 

patricia1

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Spinal Tap

Hi annamarie Sorry you had a hard time Its so unusual to get side effects, Lets hope it was worth it. Hope your get answers. I notice every test I had was a waste of time.MY Dx came from a precess of eliminations. No tests were positive. It was all clinical. I wish you luck. PAt
 
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