Lower Lumbar Puncture

Fidlmkr

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Joined
Aug 28, 2021
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3
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PALS
Diagnosis
08/2021
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US
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AL
City
Fairhope
Just received my results from a Lower Lumbar Puncture. The CSF Proteins were 110 mg/dl. High, yes, but isn't high CSF Proteins elevated in ALS patients anyway? Am having a bit of anxiety not getting an answer.(it's the weekend so....)
Any information on this from the members on the forum?
Also, is the weird feeling in my atrophying legs going to continue as they continue to disappear?
Thanks in advance.
 

BarrCarr

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Feb 23, 2020
Messages
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05/2019
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Valrico
This was mine 7/15/21
Protein, Total, CSF41 mg/dLNormal is 15 to 45 mg/dL15 - 45 mg/dL
 

Clearwater AL

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Get Real
Fidmrk, you joined the Forum last August....

"Am having a bit of anxiety not getting an answer" ?

Maybe you might share your process to a diagnosis of ALS first.
Onset, year or years, who, where, are you participating in a clinic.

It helps our very ALS knowledgeable members better help you.
 

Fidlmkr

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PALS
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08/2021
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US
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AL
City
Fairhope
Fasciculations started in 2004. I have been going to UAB Birmingham Alabama since then.
Had three EMG and nerve conduction test, First two showed abnormalities, done in 2004 and in 2020 but when Atrophy of both legs began in earnest, early 2021, the last EMG's, August of '21, were more abnormal. He did both legs and left arm plus lower back. The atrophy is also in my left arm and hand with limited use. I also began to have worsening swallowing issues along with loss of projection in my voice. The doctor said I had ALS, appearing to be slow progression.
He did the Lower Lumbar Puncture and results were the high levels of protein as I mentioned. 110 mg/dl. High.
Does this help?
 

lisa g

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I had my lumbar punch on 2/12/20 my protein was slightly elevated at 49mg/dl. I was told normal range was 15mg/dl-40mg/dl. Neurologist wasn't too concerned with that number since it was slightly elevated. They want to have another one done this year to compare values. This was the only result that was slightly out.
 

Nikki J

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I am wondering why you diagnosed people are getting lps after your diagnosis date? Lisa I think yours was when there was some question? Are they for research studies and they are sharing results? I was in a couple of studies that did and my protein was always normal. My current study doesn’t so I have no idea what it is now
 

Fidlmkr

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Messages
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PALS
Diagnosis
08/2021
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US
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AL
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Fairhope
I believe mine was to check for cancers and additional information. I still haven't heard the reason why my protein levels were high or what caused them to be high.
 

lisa g

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Yes Nikki that's correct, my lumbar punch was done when my diagnosis was in limbo. The reason that I will be scheduled for another one is because I am in a study of Dr Benatars.
 

Nikki J

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Thanks for being in a study. So very important to help find biomarkers!
 

lisa g

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Messages
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I'm past my prime to participate in any drug trials so if I can contribute this way I'm all in.
 

BarrCarr

Member
Joined
Feb 23, 2020
Messages
27
Reason
PALS
Diagnosis
05/2019
Country
US
State
FL
City
Valrico
Research. I get tapped twice a year - in my third year.
 
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