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Willow

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Joined
Dec 28, 2006
Messages
102
Reason
DX MND
Diagnosis
04/2012
Country
CA
State
East Coast
City
NA
I wonder if I may ask your thoughts on this procedure.
I have an appt. soon in regards to booking this. I have to admit every ounce of my being is saying no so I really need some convincing that this test could. can, will or may produce some results. I have far too many vivid memories as a child, of my mother having several of these. They are for certain influencing my decision right now.
Just to keep you up to date; I am NOT diagnosed with ALS. It has been four long years of tests and doctors but right now we are hopefully looking at some sort of lumbosacral plexopathy...they will be able to say for certain after an MRI with contrast....if this is also negative, then we are looking at a lower motor neuron disease.
My neurologist is requesting I have the LP in addition to the MRI regardless of the MRI results. The MRI is not booked yet and could be some more months, we are right now at 6 months since the neurologists request.
As I said earlier...this is a test that I really do NOT want to have and truly see no purpose in doing. From my understanding this test MAY only show if there is a process taking place that is inflamatory. Having jumped through so may hoops prior to this...I really doubt this is nescessary or would be helpful.
Thanks for any insight you may offer, I really would and do appreciat any insight you may have very much. I don't post often so it is easy to look up my posts and see how I came to be here...no great saga or anything.
Thanks;
Willow
 
Jim just had one in December. He had an anxiety attack prior to it - but after it he admitted it really wasn't that bad - more mental then physical pain. The worst part was the numbing med - it felt like a bee sting then burned for a few seconds.

The LP came back negative - but that is what we were expecting - it was the "final test" - ruled out everything else. They also (with our permission) took an extra vial for research purposes. It was an outpatient procedure - the longest part was the wait afterwards - he had to lay on his back for 2 hours before he left - he napped.

Would he do it again - yes.
 
I, like Jim had one to be the final test to rule out any thing else and like Jim the numbing med was the hardest, (bee sting is an apt description) along with the 2 hour lying flat afterwards.
Mine was done when in hospital having a series of other tests, they just pulled the curtain around the bed and done it there in the ward.

Would i do it again, h*ll yes, if there was a chance to get a different diagnosed

Cheers
Peter
 
Hi willow. I had one and it wasn't so bad. With your history, I'd recommend having it done.

AL.
 
If you are a proactive type person, then getting done and over with is a positive thing. It will either find something or rule out a lot of things.

Personally, I would do it if I had a chance of changing my diagnosed.

Just do it. Promise to kiss his booboo better. The only thing left is where he will say his booboo is.

Glen
 
I had one, and it wasn't bad. In the past, I'd also had epidural and spinal anesthesia with c-sections, plus a series of epidural injections for disc problems in my back, so. maybe that is why it didn't seem like that big of a deal.

I am not able to lay flat without growing short of breath, so the test was done with me sitting on a stool, leaning over the exam table. It was kind of drawn out, took a while for enough fluid to drip out. I found it easier, pain wise, than having a single fiber EMG.

I'd say do it, knowledge is good, and a lot can be ruled out, or found by this type of test if you have symptoms that cannot be clarified. Your doctor would not have odered/suggested it, if he didn't feel it was important, (Insurance companies balk at paying for unnecessary testing, and doctors understand this very well).

Good luck!
 
mine was done under flouroscopy on a table that tilted up to help get the fluid faster. it was really no big deal...do listen about lying flat for 24 hours....my sister got one of those headaches they talk about and ended up needing a patch.

so, my spinal tap was done after mri showed lesions indicating ms...spinal confirmed ms.....drats i still have als and i guess ms too...what are the odds?
 
Jen, I find your story fascinating! I wonder what the odds are of having both ALS and MS! I haven't had a spinal tap. I suppose the negative MRI's were reason for the doc not ordering one. I feel cheated...
 
Although I had to have a blood patch, and it was really horrible. Heck, I would do it one hundred times in a row, if I could take MND away from one family here. So I say go for it. You have been down a long road, I remember you.. Just add it to one more life experience..lol...
 
Thank you for all the responses. I will keep them in mind when I discuss this with the neuro who is going to be doing it. That is a few weeks away but I will keep you posted.
Willow
 
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