[midori]

Hello, Everyone--
I've been navigating a sea of ever-changing neuro symptoms for over a year and still don't have a diagnosis. Since my "new member" post on 2/7/2016, I've had two MRIs, and x-ray, nerve conduction studies, EMG, enough blood work to make decent progress on my Liza Jane spreadsheets and two twenty-four hour urine tests.

Yesterday (huge thanks to Summerfun and the Oaklander video posted here on 4/29), I concluded I have SFPN, probably NLD as my face is becoming involved as well as my hands, feet and trunk. I've experienced at least 17 of the 34 symptoms listed in the video, and it was quite satisfying to see my daily companion "internal vibrations" listed along with the others, even if was toward the end of the list.

Time will tell if my diagnosis is correct.

The last things I'm supposed to get done before I see my very kind and patient neuro on 6/20 is a lumbar puncture and a redraw of my B12 level, which was 320 in December, and for which I've been taking 5000 ug methylCbl each day.

I've been thinking about skipping the lumbar puncture and asking to head straight to skin biopsy. My neuro was planning to send my spinal fluid to Mayo clinic for an autoimmune panel. (My ANA was negative.)

Can any of you tell me if the LP can add useful information in the differential diagnosis of SFPN? And would I even need an LP if the skin biopsy ends up positive? I noticed LP wasn't on the (relatively short) list of tests for SFPN Dr. Oaklander posted in the video.

Many thanks in advance. I've already learned so much from all of you!

Midori

[Healthgirl]

Originally Posted by midori

Hello, Everyone--
I've been navigating a sea of ever-changing neuro symptoms for over a year and still don't have a diagnosis. Since my "new member" post on 2/7/2016, I've had two MRIs, and x-ray, nerve conduction studies, EMG, enough blood work to make decent progress on my Liza Jane spreadsheets and two twenty-four hour urine tests.

Yesterday (huge thanks to Summerfun and the Oaklander video posted here on 4/29), I concluded I have SFPN, probably NLD as my face is becoming involved as well as my hands, feet and trunk. I've experienced at least 17 of the 34 symptoms listed in the video, and it was quite satisfying to see my daily companion "internal vibrations" listed along with the others, even if was toward the end of the list.

Time will tell if my diagnosis is correct.

The last things I'm supposed to get done before I see my very kind and patient neuro on 6/20 is a lumbar puncture and a redraw of my B12 level, which was 320 in December, and for which I've been taking 5000 ug methylCbl each day.

I've been thinking about skipping the lumbar puncture and asking to head straight to skin biopsy. My neuro was planning to send my spinal fluid to Mayo clinic for an autoimmune panel. (My ANA was negative.)

Can any of you tell me if the LP can add useful information in the differential diagnosis of SFPN? And would I even need an LP if the skin biopsy ends up positive? I noticed LP wasn't on the (relatively short) list of tests for SFPN Dr. Oaklander posted in the video.

Many thanks in advance. I've already learned so much from all of you!

Midori

I had both. I would never recommend the spinal tap, but that's how they figured it wasn't MS. They did the spinal tap first.

[St George 2013]

I was dx'd via skin punch biopsy which was a very easy test for me.

I was glad I didn't have to have the LP as I'm a whimp

I don't know anything about the LP or what other info it might give you/them.

Debi from Georgia

[LouLou1978]

I have had the L punch. My neurologist told me that it can show if there is inflammation. I went ahead with it, it was the most horrific experience of my life. Sending a massive electrical shocks down my leg. I then ended up in A & E with a post lumber punch headache.

The lunber Punch didn't reveal anything. I have NLD SFN, i've had the skin biopsy. This was the only thing which showed abnormal.

[echoes long ago]

it wasnt bad for me. you have to drink a lot of fluids before you have it and lay as flat as possible after it for a number of hours.

a skin biopsy can tell you if you have small fiber neuropathy but wont tell you what the cause is.

a lumbar puncture is used to look for or rule out autoimmune markers, infectious disease , lyme disease, multiple sclerosis, and chronic inflammatory demyelinating peripheral neuropathy. It wont tell you whether you have small fiber neuropathy.

[midori]

Thank you all for your thoughtful responses. This is very helpful. I will probably go ahead with it given the chance of figuring out the underlying cause of my symptoms.

[echoes long ago]

dont let them rush you out of the facility where you have the lumbar puncture done. lay flat for a little while. try to lay flat in the car on your way home and onceyou get home. this will reduce the chance of getting a headache. I didnt feel any pain at all during the procedure.

[midori]

I had the lumbar puncture today and am happy to report all went well. No adverse events, in fact, I hardly felt a thing. Thank you Echoes Long Ago for the advice to hydrate--the doctor who did the procedure said that makes things easier.

[janieg]

I had no issues with the LP either. I did get a shock at one point, but it was short-lived. Beyond that, there was little discomfort.

[Sven]

I did have an LP...nothing was "remarkable" as my neuro said regarding my spinal fluid and the actual test was pretty benign pain wise. I also laid on the table for an hour after and took it easy when I got home. Unfortunately I did get the dreaded LP headache and I wish that pain on no one...kinda like I wish no one this burning/needle pain...but it was a tough few days.

I looked at alot of studies and there is no correlation between movement after a LP and the headache. At least I did not find any..but there was an issue with the gauge of the needle used...the bigger the greater chance of the headache,

I do think the staying immobile after the procedure is a good idea...but not sure if it helps on not getting the headache.

I had a blood patch to fix the headache and that worked perfectly.,,and I am still glad I did it because of the info it provides.

Sven