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CIDP diagnosis

Posted by skyley @skyley, Jan 23 12:51pm

My local Neurologist sent me to a NeuroMuscular specialist at the local university medical center (not a level 3 like Mayo Clinic) for evaluation of peripheral neuropathy. I have symptoms of CIDP (extreme fatigue, pain and numbness in legs and arms, unsteady gait, etc.) but she said I have idiopathic polyneuropathy. She said the EMG doesn't form the typical waveform of CIDP although it shows neuropathy. I'm not sure if or how it would help to have the CIDP diagnosis. I go back to my local, very experienced neurologist in a couple of weeks, but I don't know if anyone knows how the waveform of the CIDP EMG differs from polyneuropthy. I have Rheumatoid Arthritis (RA) but the rheumatologist says my neuropathy isn't autoimnune.

All they have offered is Cymbalta 60 mg and Gabapentin 300 mg at bedtime (makes me even sleepier). I'm really frustrated because I'm 73 and would like to do a few more trips etc. before I can't do any more.

Does anyone know about diagnosing CIDP just based on the waveform of the EMG? Thanks

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 23 4:07pm

Welcome @skyley, There is another discussion with a few videos that mention current treatments and diagnosis guidelines for CIDP.
-- Current treatments and new guidelines for diagnosis of CIDP:
https://connect.mayoclinic.org/discussion/current-treatments-and-new-guidelines-for-diagnosis-of-cidp/
I did find a research article that talks about the EMG waveform but not sure how helpful it is.
-- The comparison of MRN, electrophysiology and progression among typical CIDP and atypical CIDP subtypes:
https://www.nature.com/articles/s41598-020-73104-1
You might find it helpful to look through the different discussions on Connect that mention "diagnosing CIDP" - https://connect.mayoclinic.org/search/discussions/?search=diagnosing%20CIDP.

REPLY
amkie | @amkie | Jan 24 8:22am

There is established criteria for CIDP diagnosis published in 2021 I believe. One of the criteria is the electrical testing and wave forms that the criteria specify. There are other things too that are required to fall into the CIDP diagnosis.

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1 reply
skyley | @skyley | Jan 29 10:22am
In reply to @amkie "There is established criteria for CIDP diagnosis published in 2021 I believe. One of the criteria..." + (show)
@amkie

There is established criteria for CIDP diagnosis published in 2021 I believe. One of the criteria is the electrical testing and wave forms that the criteria specify. There are other things too that are required to fall into the CIDP diagnosis.

Jump to this post

Yes, I looked them up and have the other symptoms . I have the demylenization, as demonstrated on the EMG. Wave forms are present.

I have the absent reflexes, weakness and pain in my arms and legs, difficulty walking, including falls.

All of my symptoms are getting worse.

I see my local neuro next week and work from there. Hes on a list of the neuros who are certified to treat CIDP. So maybe he can explain why the specific wave form is so important for diagnosis. The university based neuro calls it idiopathic chronic poly neuropathy. I just wish there was a treatment available because I am becoming more disabled as time passes. Thanks

REPLY
lucy1254 | @lucy1254 | Jan 30 9:27am

I was in the same condition as you when diagnosed in late 2015.
My doc started me on Hyzentra which originally was infused once a month at the hospital but now I take it weekly at home. Very small needles go in my belly ( sub Q) and it takes 1.5 hours but I am mobile and can move around when infusing. At 2 years I went into remission. I was no longer falling, legs no longer hurt ( still a little numb) but I totally have most feeling back. I’ve climbed pyramids in Egypt, hiked Manchu picchu, been to the Amazon in Ecuador, been to Morocco and the lust goes on. I take all my meds with me ( no airport issues at any country) and compared to falling down my stairs in the dark, falling washing my hair in the shower, and not having any feeling in my legs… I’d say this med is a lifesaver. Ask your doc. Btw my friend was diagnosed with CiDp but her doc would not give her the meds. She became wheelchair bound went into nursing home and has since passed. She was only 62. I’m 70 and just booked 3 weeks in italy and Greece for the fall.

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1 reply
lucy1254 | @lucy1254 | Jan 30 9:32am

Also they confirmed the diagnosis with a spinal tap ( easy no pain at all) and with the EMG and high protein in spinal fluid was the confirmation of CIDP.
Get a neurologist that is INFORMED in CIDP… not just your run of the mill PC doc.

REPLY
reubenwithcidp | @reubenwithcidp | Jan 31 10:54am

I just had an appointment with my neurologist and don't have to go back for 6 months (had been every 3 months). I have been on IVIG every 3 weeks for 10 months now and have just really started noticing the effects in the last month or so. I have less pain now than I've had for years. He said most insurers want to try a withdrawal from the therapy after 2 years to make sure it is still needed. The Gamunex seems to be working for me, it just took a while to have an impact.

REPLY
2 replies
lucy1254 | @lucy1254 | Feb 1 8:25am
In reply to @reubenwithcidp "I just had an appointment with my neurologist and don't have to go back for 6..." + (show)
@reubenwithcidp

I just had an appointment with my neurologist and don't have to go back for 6 months (had been every 3 months). I have been on IVIG every 3 weeks for 10 months now and have just really started noticing the effects in the last month or so. I have less pain now than I've had for years. He said most insurers want to try a withdrawal from the therapy after 2 years to make sure it is still needed. The Gamunex seems to be working for me, it just took a while to have an impact.

Jump to this post

Fight to stay with it. It’s working for me. If your doc says you need it… and the insurance wants to remove you… have him send an appeal and you as well write an appeal letter to insurance. Glad to hear you are getting better!

REPLY
1 reply
skyley | @skyley | Feb 1 1:48pm
In reply to @lucy1254 "Fight to stay with it. It’s working for me. If your doc says you need it…..." + (show)
@lucy1254

Fight to stay with it. It’s working for me. If your doc says you need it… and the insurance wants to remove you… have him send an appeal and you as well write an appeal letter to insurance. Glad to hear you are getting better!

Jump to this post

Thanks for the encouragement. Sometimes I get worse for a couple of weeks and then spontaneously get a week or two of not feeling as bad. I don't know if flare-ups are typical in CIDP. I'll be back with updates as they happen.

REPLY
skyley | @skyley | Feb 1 1:58pm
In reply to @lucy1254 "I was in the same condition as you when diagnosed in late 2015. My doc started..." + (show)
@lucy1254

I was in the same condition as you when diagnosed in late 2015.
My doc started me on Hyzentra which originally was infused once a month at the hospital but now I take it weekly at home. Very small needles go in my belly ( sub Q) and it takes 1.5 hours but I am mobile and can move around when infusing. At 2 years I went into remission. I was no longer falling, legs no longer hurt ( still a little numb) but I totally have most feeling back. I’ve climbed pyramids in Egypt, hiked Manchu picchu, been to the Amazon in Ecuador, been to Morocco and the lust goes on. I take all my meds with me ( no airport issues at any country) and compared to falling down my stairs in the dark, falling washing my hair in the shower, and not having any feeling in my legs… I’d say this med is a lifesaver. Ask your doc. Btw my friend was diagnosed with CiDp but her doc would not give her the meds. She became wheelchair bound went into nursing home and has since passed. She was only 62. I’m 70 and just booked 3 weeks in italy and Greece for the fall.

Jump to this post

Wow that's all very encouraging. You are much more ambulatory than me. I'm almost 74. I walk around the house just using the furniture for balance but need a rollator to "go for a walk". I have taken a mobility scooter for travel in airports to go on tours. Everyone is accommodating but I worry that I'll fall. I fell the other day and need a lot of assistance getting up. We are going to Spain in March (planned a year ago) and the tour company is happy for me to bring my GoGo scooter on the bus.

I will continue to advocate for myself. If my local neuro isn't willing to try things with me, or even if he is, I think I will look into going to the Mayo Clinic. This group is very helpful. Thanks

REPLY
lucy1254 | @lucy1254 | Feb 7 9:16am
In reply to @reubenwithcidp "I just had an appointment with my neurologist and don't have to go back for 6..." + (show)
@reubenwithcidp

I just had an appointment with my neurologist and don't have to go back for 6 months (had been every 3 months). I have been on IVIG every 3 weeks for 10 months now and have just really started noticing the effects in the last month or so. I have less pain now than I've had for years. He said most insurers want to try a withdrawal from the therapy after 2 years to make sure it is still needed. The Gamunex seems to be working for me, it just took a while to have an impact.

Jump to this post

If they try to take you off…fight to keep it. I’ve been on it for years!! Nearly no issues anymore but my doc still sees it.

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