1. < Autoimmune Diseases

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

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kirbyukat | @kirbyukat | Feb 26 1:20pm
In reply to @johnbishop "Welcome @kirbyukat, I have small fiber PN but haven't had the lumbar puncture but I did..." + (show)
@johnbishop

Welcome @kirbyukat, I have small fiber PN but haven't had the lumbar puncture but I did find this information that might provide some answers.

"Approximately 90 % of patients with CIDP demonstrate elevated CSF protein (greater than 45 mg/dL) (62-64). CSF pleocytosis is not typically seen, and often suggests a co-infection, such as HIV (65)."
--- Chronic Inflammatory Demyelinating Polyradiculoneuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4845954/

Have you started any treatments?

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I start Ivg infusion on Thursday. Nothing else was discussed or offered by my neurologist.

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casey1329 | @casey1329 | Feb 26 4:20pm

My 72 yr' old husband was treated for 3 months. We didn't see any change. Went for a 3rd opinion neurologist said that he would wean him off it over a period of 6 months since it didn't seem to have any affect on my husband who was suffering from weakness and balance issues. Since there is no definite test for it we went for a 4th opinion. The neurologist, as 3 others before him, could only say that the emg tests show slight nerve damage in his feet. My husband can walk around bare foot in the winter and say his feet aren't cold. I'm wearing socks & slippers. Anyway, the 4th neuro. said my husband did not have CIDP. This dr. suggest that my husband stop drinking. My husband did and if fine today. Wish you all the best.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 26 6:49pm
In reply to @kirbyukat "Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted..." + (show)
@kirbyukat

Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted to get in with Mayo Jacksonville without success. Difficult finding a neurologist with a true knowledge of this disorder.

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@kirbyukat If you’re having trouble getting into Mayo, Jacksonville, you can always call them and ask for recommendations of local dermatologists. You can also contact:
GARD, the Genetic And Rare Diseases organization:
https://rarediseases.info.nih.gov/
Or NORD , the National Organzation for Rare Diseases:
https://rarediseases.org/
Both organizations should be able to help you find a doctor.
Will you make a call and let me know what you learn?

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kirbyukat | @kirbyukat | Feb 26 6:51pm

Yes I’ll call tomorrow! Thank you

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Nemo1 | @nemo1 | Feb 26 7:47pm
In reply to @kirbyukat "I’ve recently been diagnosed with CIDP through nerve conduction tests, EMG and lumbar puncture. The lumbar..." + (show)
@kirbyukat

I’ve recently been diagnosed with CIDP through nerve conduction tests, EMG and lumbar puncture. The lumbar puncture demonstrated high normal levels of protein. Is this consistent with CIDP. Symptoms began in 10/23. Thank you

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My NM doctor was going to do a tap but decided not to, to wait. It is good to be armed with information. I suppose the are going to do one now with worsening symptoms that expanded.

I hope you find the answers you seek. It is good you have some answers.

What are they doing for you?

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1 reply
kirbyukat | @kirbyukat | Feb 27 9:42am
In reply to @nemo1 "My NM doctor was going to do a tap but decided not to, to wait. It..." + (show)
@nemo1

My NM doctor was going to do a tap but decided not to, to wait. It is good to be armed with information. I suppose the are going to do one now with worsening symptoms that expanded.

I hope you find the answers you seek. It is good you have some answers.

What are they doing for you?

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I start immunoglobulin infusion Thursday

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1 reply
Nemo1 | @nemo1 | Feb 27 10:34am
In reply to @kirbyukat "I start immunoglobulin infusion Thursday" + (show)
@kirbyukat

I start immunoglobulin infusion Thursday

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I’m so glad you are receiving help! That is excellent news. I hope all goes well and that you find relief asap!

💜

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harley22 | @harley22 | Mar 11 10:46am
In reply to @kirbyukat "Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted..." + (show)
@kirbyukat

Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted to get in with Mayo Jacksonville without success. Difficult finding a neurologist with a true knowledge of this disorder.

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Relocating to Phoenix at some point and called Mayo Clinic for an appt.
I was told there were no neurological appts available at this time.
This was my last hope in finding some kind of hope with my CIDP.
I’ve been to 6-7 neurologists over the past 11 yrs with not one doc able to figure out what’s up with me, or a treatment to help my nerve pain.
Been on all the meds, IVIG infusions, and testing available including mris, spinal taps, EMGs, nerve biopsies, tests to r/o MS and Amyloidosis,etc.
Right now I take Tramadol 50 and salonpas pain patches as needed for pain.

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1 reply
kirbyukat | @kirbyukat | Mar 11 6:09pm
In reply to @harley22 "Relocating to Phoenix at some point and called Mayo Clinic for an appt. I was told..." + (show)
@harley22

Relocating to Phoenix at some point and called Mayo Clinic for an appt.
I was told there were no neurological appts available at this time.
This was my last hope in finding some kind of hope with my CIDP.
I’ve been to 6-7 neurologists over the past 11 yrs with not one doc able to figure out what’s up with me, or a treatment to help my nerve pain.
Been on all the meds, IVIG infusions, and testing available including mris, spinal taps, EMGs, nerve biopsies, tests to r/o MS and Amyloidosis,etc.
Right now I take Tramadol 50 and salonpas pain patches as needed for pain.

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Search CIDP Centers for Excellence. The closest one to you may be in Utah. Best of luck to you!

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