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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP? or something else?

Back in 2006 my husband was diagnosed with CIDP and was treated with IVIG treatments and recovered. Then he had a major surgery about 6 weeks ago and right after surgery he started getting symptoms, that is how his last it happened after a major surgery.
It started with a pain like an electrical shock running down his arm when extended then going numb in the middle of arm and thumb is numb, his wrist is weak along with his arm, then it progressed to a very bad upper arm ache, along with burning patches of skin on his torso, every couple of days there are new burning patches on his stomach and torso, around arm pits and going around to back, they burn really bad when touched and some of then have gone numb now. He also feels generalized weakness in his legs. His right arm is starting to get the shock down his arm when he extends his but hasn’t progressed to where the other arm is yet.
Does this sound like CIDP?? His neurologist believes it is and he will be starting IVIG, they will be doing a 5 day course. I have just asked a few others and they say it doesn’t sound like CIDP but if it was another neuropathy what could it be?
He had a spinal tap a couple weeks ago and it was elevated at 174.
thanks

This is definetly not what they call “typical CIDP”. It could be one of the forms of atypical CIDP or another inflammatory neuropathy. Many inflammatory neuropathies besides CIDP respond well to IVIG. So good news is using it again now is probably good but they need to determine if really CIDP for continual care.
When he was diagnosed with CIDP in 2006, what tests did they do to verify CIDP? Did they do Nerve Conductivity Study and EMG? He should have to diagnos as CIDP. Are his reflexes either decreased or absent-should be for all forms CIDP? How long and how much (such as 5 days IVIG, then 2 days IVIG every month for 3 months) IVIG did he do?
Did he just do a few IVIG’s in 2006 and it went away for the last 13 years? If that’s the case- that wasn’t and this isn’t any type CIDP.
He needs a Nerve Conductivity study and EMG now- wheather he had one before or not. NCS and EMG’s show if an inflammatory neuropathy and can be applied directly to specific CIDP NCS EMG criteria.

You are right to question if CIDP. Depending on your answers, I can give you more detailed response.

Susan

Thank you Susan I appreciate you response, following is exactly from his file when he was diagnosed with CIDP in 2006.

  1. CIDP. This diagnosis is based on elevated CSF protein and Fwave prolongation (by Dr. Ochoa), though the latter to my knowlegde is not prominent; NCS were normal. His symptoms responded to IVIG. For details see my initial note 4/7/06 and chart review 3/29/06. His symptoms began 12/05, or before (see #3, below for history of other neuropathic issues).

If I remember correctly he started ivig treatments with 1 ivig but then they had to slow it down and he went in 5 consecutive days due to severe headaches, I can’t remember exactly his schedule but I believe he went once or twice a month for approximately 5 months.

For this new neuropathy he did have EMG and a NDS and both were normal however he has elevated CSF at 174. Can surgeries bring on high CSF? He just had a lower bowel resection surgery. His reflexes are good, only issue is severe upper arm pain with electrical shock down his arm to his fingers when extended with numbness and weakness in his arm, fingers and wrist. Then he has the random burning and numb patches around his chest, torso and around arm pits. We thought possible that his arm was unrelated so we went to a orthopedic doctor and he thinks it’s his radial nerve, not sure if CIDP affects that or displays those symptoms.
My husband always seems to get some weird neuropathy every time he has trauma to is body, back in 1997 he crashed on his dirtbike and broke his leg, well right after that he developed a brachial plexus and during that one it affected the nerves to his left lung so he now has a paralized left diaphram.

It is so frustrating, I just don’t know what to do, his neurologist got the ivigs approved but if it’s not cidp or ivig wouldn’t work I don’t want him to have to endure that because he is going through chemo right now as well and that is already hard on him. (The neuropathy started way before chemo, thought I would mention as people automatically assume it was the chemo and as of right now he’s only had his first one).

Thank you, I have tried researching different neuropathies and I can’t seem to find anything like his.
Thanks again

My initial CIDP symptoms were numbness and strong shooting nerve pains in my legs — so strong that one or both legs would give way under me and I would fall. My neurologist, who is considered an expert on CIDP and teaches neurological diseases in medical school, recognized this as symptomatic of CIDP. The first cycle of IVIG eliminated those pains. But my EMG and NCS were never normal. They were markedly abnormal from the start, showing that I had already lost more than 80% of the nerve function in my legs before I even saw a neurologist. That has not improved but also hasn’t progressed since I began IVIG. My arms and hands have been weakened, but nowhere near as badly as my legs.

Wow that’s awful. I’m so sorry!
In 2006 after my husband back surgery that was his first sign was severe pain down the back of his legs that progressed to weakness rather quickly. He needed to use a walker and he was only 37 years old. His surgeon said it was due to the back surgery and said it would get better, but it only got worse, went to a neurologist all his EMG and NCS were normal so again they said it was back surgery. However he did have an elevated CSF at 185, then it moved up to his arms and he did have weakness in his arms and hands as well.
Glad to hear yours hasn’t progressed since being on IVIG

wife2jeff — Sometimes pain and numbness in an arm and hand is due to pressure on a nerve in the neck from arthritic spurs on the neck bones. I have had this problem for literally decades, long before I developed CIDP. So many things can cause nerve symptoms that it may be difficult to sort them out.

He had an MRI of his head, neck, and C-Spine and all were fine.

Sounds like your husband is in the hands of a very thorough and careful doctor. I hope he gets the help he needs.

You don’t know me so I’m okay if you’re not comfortable with this. I am severely disabled including my fine motor skills, from CIDP. I talk emails through my phone but it still takes a long time because doesn’t recodnise many medical terms. I have other things need to ask you, which I can do quickly, if we were to speak on the phone. If you’re comfortable, call me at ********** cell. (I am in North Carolina EST zone and anytime is fine)

In case you’re not comfortable calling here are some of my questions and ideas.

Why is he taking chemo? Is he doing a stem cell transplant (SCT) or cancer but no SCT? If not SCT, do you know the name of his chemo drug- is it cyclophosphamide?

I asked these questions because CIDP can be treated by getting a SCT (Medically full name is HSCT- Hematopoietic Stem Cell Transplant). This is same SCT including chemo that a cancer patient gets. The first paper written about it was a leukemia patient, who also had CIDP, got a SCT for leukemia. After the SCT, that patient’s CIDP went away. Cyclophosphamide is chemo used in Autoimmune Disease SCT.

I know so much about SCT for CIDP because I just had one in May to save my life. I am still recovering.

For 18 years, I was in the hospital for 7 out of every 28 days to get high dose IVIG. I had to be in the hospital because my body’s reaction to IVIG was so horrible. I was pre-treated with and received every 2 hours IV Benadryl, IV Zofran, and IV Dilaudid and still turned bright red (occasionally with hives), headaches, joint pain and eventually developed drug-induced meningitis each treatment. Most people would just stop IVIG, but that wasn’t a choice. The IVIG slowed my CIDP down but never stopped it. Nothing else ever slowed it down. It was so aggressive that even trying to spread treatment out 4 days later it took over what was still working in my upper arms and affected my breathing more. After 239 consecutive IVIG treatments, my body could take no more and SCT was my only chance to survive more than 3 or 6 months.

I am in a motorized wheelchair, have no sensation or movement from mid thighs down, no sensation and extremely weak fingers hands to Mid forearm and partia l paralysis left diaphragm requiring 18 to 20 hours of oxygen daily. After my SCT, my CIDP progression stopped cold. I have now gone 4 months without an IVIG. I have been at home without a hospitalization 105 days.The last time I was home more than 22 days in a row was 18 years ago.

To get Partial paralysis of diaphragm from CIDP, buy the way CIDP advances, both arms to at least the forearm must be effected before it can effect the diaphragm. So your husband’s diaphragm paralysis can’t be from CIDP.

Based on what you said I’m trying to figure out why they think it’s a inflammatory neuropathy at all. The first time, if not CIDP, IVIG might not have helped- it literally could have been something temporary and gotten better on its own. He has no symptoms of an inflammatory neuropathy AND none of the criteria. Half of CIDP patients DON’T have High Protein level in CSF, which is why that alone isn’t a diagnosis. Normal NCS and EMG ELIMINATES ALL Inflammatory Neuropathy Diseases. I think only reason they are saying CIDP NOW is because listed in 2006. Even the 2006 note says normal NCS and says Fwave prolongation is NOT prominent (which means not CIDP). It looks like original CIDP diagnosis wrong. You should push that wasn’t CIDP before.

Have them evaluate him with CIDP not part of his history- It won’t hurt him and is probably only way to get proper diagnosis and care now.

High Protein in CFS can mean nothing and be caused by many things including diabetes, any injury that effects central nervous system (like his brachial plexus), spinal injury(damage) or compression (even disk issues), previous stroke, and more. See this article https://www.sciencedirect.com/topics/biochemistry-genetics-and-molecular-biology/protein-cerebrospinal-fluid-level .Half of CIDP patients don’t have high protein levels. His high protein could be there ALL the time and may have been there in 2006 the first time from nerve damage to diaphragm, which is fine. It may never have gone away since 2006. It most likely isn’t related to what is going on now.

I am not going into detail here just know I had brachial plexus. I also had C5 & C6 in my neck to herniate with the pieces of the herniated disks causing a 50% compression of the spinal cord (completely gone now). With that said, I have suggestions of what might be going on with your husband and what tests will prove it.

If the severe arm pain & numbness are on same side as paralysis of diaphragm, the brachial plexus that originally effected the phrenic nerve could be worse. No matter which arm it is, could be a new brachial plexus.

Did this start right after his surgery? Brachial plexus is commonly caused by positioning of an arm during surgery on another body part, which is how mine happened.

Did the FIRST time in 2006 happen after surgery for anything?

Back to Did this start after his surgery? Positioning of neck during general anesthesia can cause cervical spine issues, even without actual neck pain.

? Have they done a MRI of his cervical spine in his neck recently? Almost all the symptoms you’re describing could be due to damage and/or compression in that section of his spine. It would explain the spottiness of some of his symptoms. It can also cause the high protein. He doesn’t have to have felt neck pain, especially if it is compression of spinal cord. Compression also means his symptoms can fluctuate. Compression of spinal cord can be caused by many things including bulged/herniated discs and inflammation. He could have had a simple cervical problem that wasn’t causing symptoms and then positioning of neck during surgery either directly made it worse or caused inflammation which added to it and is causing his symptoms.

If doctors try to say that is rare, point out 3 things. First, your husband’s medical history is full of extremely rare things- especially what caused his diaphragm paralysis. Second, it is less rare than trying to say this is CIDP when missing all the criteria I discussed above. Third- a cervical MRI is a DEFINITE way to eliminate it.

I know this is alot. It took 2 hours to do. But in case you didn’t call, I wanted to help best I could. Both of you will be in my prayers.

Sorry about delayed and long response above. I was responding to your reply to me. I wrote it speaking into my phone and transfered over to here so I didn’t see the other replies before I hit send.By the time its posted you anwered 2 questions I asked and so knocks out half what I asked.
I saw you said first time happened after surgery as well. Also saw had MRI of spine. Did they do one recently- since this started again? If no, that section still relevant. If yes, ignore entire section.

Hi Susan,

I am so sorry that it has taken me so long to respond. I would like to contact you it just has been very chaotic here. I will try to some time this week, I will try to let you know before I call. I am in the Pacific NW. I would be very curious to know what you think his burning skin on his torso and chest could be.

Thank you,

Michelle