How Were You Diagnosed With Your CIDP Variant?

This sounds like my story! I too would like some info. I have been doing some reading up on CIDP and I have all the symptoms but they are also symptoms of GBS residuals. My question for you grawplyr is did you have any residuals after your bout with GBS? I had a some tingling in my hands and feet but things are getting increasingly worse.

In addition to an EMG and spinal tap my neurologist also did a number of blood tests. One of them was a SPEP, a serum protein electrophoresis, to show antibody spikes. Here is a link to a document explaining it : [COLOR=”Navy”]www.aafp.org/afp/20050101/105.pdf [/COLOR]
another one was for anti-MAG IgM which turned out positive. The neurologist may have suspected that because of the slow progression of my symptoms over years. This is typical for this variant.
Take care

grawplyr.
I wonder what you include amongst [QUOTE]all the variations of CIDP/QUOTE]?
A quick list could be:
PDN – Paraproteinaemic Demyelinating Neuropathy, which would include anti-MAG IgM, IgM, IgG, IgA. Sometimes known still as MGUS associated neuropathy.

MMN – Multifocal Motor Neuropathy.

MADSAM – Multifocal acquired demyelinating sensory and motor neuropathy.

CAN – Chronic axonal neuropathy.

I’m IgA PDN. After a sural nerve biopsy I was thought to have CIDP. I reacted badly to prednsiolone and then my blood test results were rechecked and the serum protein electrophoresis was found to show the IgA spike.:rolleyes:

I don’t know if we’ll ever know the exact number of variants & what they all entail.

Emily has a rare motor variant of CIDP with opthamalopegia (eye involvement). What the name of that rare motor variant is, I cannot tell you. It was never named. Just noted that it seemed rare & was a motor variant.

Kelly

It was so long ago, back in Dec of 2002 that my neuro first suggested I try cytoxan infusions. I remember him talking about T cells vs B cells, but was really too sick to listen; or to even care. I did ask about rituxan even way back then, but was told it wouldn’t help me out. Maybe because my decline was so rapid & I was basically total care at the time. He did tell me that chemotherapy was my last resort though.

[QUOTE=grawplyr]I’m wondering how you guys found out you had IgG deficiencies and all the variations of CIDP? I’m also wondering what all the variants are. Can anyone point me to any reference material on this? I haven’t had any serious blood work regarding t cells or anything like that. My neuros are just going off of NCV/EMG tests and the GBS I had almost 20 years ago. I am reluctant to do another spinal tap since the last attempt was botched and from what I have read they aren’t necessarily going to provide any conclusive information.

Thanks for any help you can provide.[/QUOTE]
Hello,
My husband was diagnosed with CIDP MADSAM (Lewis Sumner Variant) in the summer of 2007. He had EMG, nerve conduction tests, lumbar puncture, routine blood work, and various MRI’s of head, neck, and spine. We paid about $1500 and had the following Athena Lab tests. SensoriMotor Neuropathy Profile-Complete #275
Type of Disorder: Peripheral Neuropathy
Typical Presentation: Peripheral neuropathy with mixed sensory and motor symptoms
Disease(s) tested for: Hu paraneoplastic syndrome, Anti-GM1 motor neuropathy, Anti-MAG neuropathy, Sulfatide neuropathy, GALOP neuropathy
Test Details
Test Code: 275
Profile includes: GALOP™ Antibody Test, MAG ‘Dual Antigen’® Antibody Test, Co-GM1 Triad™ Antibody Test, Sulfatide Antibody Test, Recombx™ Hu Antibody Test
Informed Consent Required: No
Medicare ABN Required: No
Special Notes: N/A
Technical Information
Utility: Detection of anti-MAG, anti-SGPG, anti-GM1, anti-GD1b, anti-asialo GM1 and anti-Sulfatide antibodies. Detection of anti-Hu using recombinant human antigens. Detection of serum IgM binding to anti-GALOP antigen.
Methodology: ELISA using covalent plates and Western blot
Laurel

Athena Lab tests. SensoriMotor Neuropathy Profile-Complete #275

You can find this on their web site at [url]http://www.athenadiagnostics.com/content/test-catalog/find-test/service-detail/q/id/23[/url]

Laurel, it almost sounds like your husband has some IgM PDN mixed in with his MADSAM diagnosis. By the way, I had never heard of GALOP before and did some research thinking that I would uncover either a horse related virus 😀 or some special antigen. I was surprised to eventually find that GALOP refers to “[COLOR=”Blue”][B]G[/B]ait disorder; [B]A[/B]utoantibody; [B]L[/B]ate-age [B]O[/B]nset; [B]P[/B]olyneuropathy[/COLOR]”. There are no shortages of initials in this business!!

Andrew

[QUOTE=Andrew]Athena Lab tests. SensoriMotor Neuropathy Profile-Complete #275

You can find this on their web site at [url]http://www.athenadiagnostics.com/content/test-catalog/find-test/service-detail/q/id/23[/url]

Laurel, it almost sounds like your husband has some IgM PDN mixed in with his MADSAM diagnosis. By the way, I had never heard of GALOP before and did some research thinking that I would uncover either a horse related virus 😀 or some special antigen. I was surprised to eventually find that GALOP refers to “[COLOR=”Blue”][B]G[/B]ait disorder; [B]A[/B]utoantibody; [B]L[/B]ate-age [B]O[/B]nset; [B]P[/B]olyneuropathy[/COLOR]”. There are no shortages of initials in this business!!

Andrew[/QUOTE]
Hi Andrew,
Why do you think he has some IgM PDN mixed in with his MADAM diagnosis? All of this is a learning curve so I’m anxious to learn more. His Athena tests were negative for everything in their SensoriMotor Panel. I know his neurologist is almost amazed at how well he is doing thus far on IVIG. His grip on his right hand has gone from not being able to hold a coffee cup or shift car gears to back to using a hoof knife to trim our horses feet! He still has the dreadful wasting appearance below his thumb and index finger and decreased girth of his arm from wrist to elbow, but we think we are seeing a little improvement in those areas i.e. on his hand it may be getting a little muscle back on the outer aspect of his palm. When you look at his hand and arm it is shrunken and almost looks like he had a stroke.
Laurel

[QUOTE=laurel]Why do you think he has some IgM PDN mixed in with his MADAM diagnosis? [/QUOTE]
Hi Laurel
It is a learning curve for me too! What I saw in your previous post:
[QUOTE=laurel]Detection of anti-MAG…and…Detection of serum IgM binding to anti-GALOP antigen. [/QUOTE] Those are the things I have with the IgM PDN. B cells producing the clonal antibody anti-MAG that attacks the myelin.
Maybe it is a jump in assumptions on my part and for sure I am not an authority on this.
I also tried to look up the anti-HU stuff in the report from Athena Labs. The biological jargon I found was beyond my comprehension, but it did talk about E coli and Hu antibodies. Do you think that the muscle wasting could be due to a type of flesh-eating disease caused by the E coli (hu antigen) and that some of the neurological damage could be from the immune response gone a bit haywire.
Laurel…please don’t take anything I say as being gospel. Like you, I am on a steep learning curve. I never studied biology and this is all new to me. I guess I ask a lot of questions and some are dumb questions, but that’s how we learn.
Glad to hear that he is making such good progress and the fact that the IVIG has had such a wonderful positive effect suggests that your doctors know what they are doing and have made the appropriate prescription.
I hope he keeps moving forward in his recovery
Andrew

Grawplyr – Yes, treatment has worked for Emily. She had massive amount of IVIG (200 grams a month for 2 months) before we really saw improvement. Now she gets 20 grams every 2 weeks…we’ll be lengthening the time between treatments again in the next few weeks. Kids are amazing like that.

Kelly

[QUOTE=grawplyr]wow thats great news! 200gm for her is alot! she cant be more than 50lbs?

i dont think I could handle the equivalent 1200gm infusion 😮

———

so you guys paid $1500 for those tests????? Did your docs recommend it or did you do it on your own?Does medicare pay for those?[/QUOTE]
Hi,
It was me that mentioned the $1500, and we are in Canada. Our medical plan didn’t cover it, but I know nothing about medicare. One plus is that it is tax deductible here.
Laurel

Well it is subsidized health care, but we do pay monthly premiums (around $200.00), and the plan then pays things like hospitalization, approved blood tests, ambulance etc. But in no way is it free. Yes, for those that cannot pay at all it can be free, but there are lots of limitations. Such as the Athena tests which aren’t deemed necessary by the government. And of course we have such horrendous wait lists for things like MRI’s that often people often opt to go to a private clinic and pay themselves versus waiting for up to a year to get an MRI. It on the whole is a very good system, but the system is under stress and seems to be breaking down a bit. Some people are waiting 2 yrs. to get hip replacement surgery etc. Too many users, not enough money, not enough staff and an aging population are factors.
Laurel

Grawplyr-

Emily had IVIG infusions (20 grams) 2-3 times a week – that’s how it added up to 200 grams monthly. It WAS a lot but it’s the only thing that got her on the path that she’s on now. Who knows what would have happened if I didn’t talk her dr into trying it.

She was about 41 lbs at the time. She’s 50lbs now – 18 months after doing the heavy duty IVIG’s.

It was HARD but my girl made it through.

Kelly

I was dx with MGUS in 2002. Had a very high IgM spike of 1400. Did not recieve treatment as I had no symptoms.
In Nov. 2007 was dx with CIDP and now in Jan 2008 was dx with Anti-Mag IgM with CIDP variant. IgM remains high. Have been looking it up on the web and have a lot of questions for MD next visit.
My spinal tap also was five times higher than normal and NVC/Emg showed severe demyelination with some axonal damage and inflammation.