December 1, 2020 at 9:59 pm #117791
Hello. I got CIDP 4 years ago when I was 60. Been on IVIG for 3-1/2 of those 4 years, various doses & regularity. Current meds: Gabapentin 1500mg daily (300mg 5 times daily) & nortriptyline 10mg at bedtime
My face, eyes, tongue, scalp, ears & lips have been numb for 3 of the years. I have lost 80+% of my taste due to tongue numbness. The last couple months my palate and throat have been getting numb so it’s not like the progression has ceased.
When asking my neuro doctor at Cedar-Sinai in Los Angeles about this he says “CDIP does not present in this way, so I don’t know what that is.”
Of course I have the feet, lower legs, hands and forearms terrible numbness, severe burning, hot & cold feelings on extremities, pin pricks and the occasional nerve shorting/zapping where feels like an electric shock going from one place in my body to another. I jump like I just got a little 120 volt zap.
Before I go in to my next checkup, I wanted to check on others & see if they have the facial, etc., numbness as I have. Hoping all the responses are “no”. But if there are quite a few “yes” answers I can open up the discussion with neuro again and have something to back it up.
Thanks to all that respond.
Best regards to all, John
December 1, 2020 at 10:04 pm #117792Mark RobichekParticipant
I’ll start off with a “no”. I did not have any symptoms at all from the neck up.
Good luck to you!
December 1, 2020 at 10:38 pm #117793AusvoltzParticipant
Yes you can have these issues I have mild numbness but it’s increasing.
December 2, 2020 at 6:10 am #117794Walter KParticipant
I have slight partial numbness/tension of my left cheek, starting near the nose and reaching down around my neck and then down the spine. It started with a light tickle and weakness in that spot about two years ago. Also have weakness and tension in my spine all the way up to the scalp, (was told that this is not CIDP like). Had a slight loss of strength in my left hand, mainly thumb which now spread to both arms.
The whole story started on the left two middle toes and spread to both legs and both arms now.
Not 100% sure If I have CIDP or another form of neuropathy but the last diagnosis was CIDP 10 months ago and there is some evidence to back it up.
Have tried IVIG which has made it worse from the second day of infusion by increased muscle twitching , itchyness and spread of numbness in my feet. Two monhs later we tried Myfortic at 3 x 360mg a day which made everything so much worse that I could not walk or work anymore a few days into the treatment. Things have eased off a little since I discontinued the Myfortic but still don’t want to walk more than 100m (I was working full time and on my feet for 12+ hours every day until I started Myfortic).
My experience is so far:
A). Some of the medications or treatments may not have the desired effect
B). Most if not all the medical professionals I have so far consulted were just guessing and trying.
C). Most of them did have a different opinion as to what typical symptoms of the disease look like and did not include some of the symptoms I observe or even some of the symptoms of people within this forum. Sometimes I mention one symptom to a Dr. which is not on their tick list and it feels like I was trying to cheat the system. On the other hand I keep reading how diverse the disease really is with too many variants and symptoms to properly diagnose.
D). I have seen 5 Nerologists and one Immunologist over the last 3 years and told each and every one of them multiple times that I can feel I have an inflammation in my spine. My spine is hot at times and when it gets hot I also feel a progression in my other symptoms. Not one of them found it neccesary to further investigate this issue since the MRI report said there is no visible evidence that it could be caused by my spine and the blood tests also showed no evidence.
E). I am now seeing several different alternative practitioners and an Osteopath to help with the spinal issues and pushed my GP very hard to get a referal to a spinal specialist. I had mild relief from it after one session.
I feel that anybody showing symptoms other than whats on the doctors list should not get discouraged and/or brushed off. Be persistent and persevere. After all from my experience the doctors don’t know too well themselves. ( Warning: This would not be a good starting line for a coversation with your specialist…)
Looking at the dosage of your medication perhaps side effects could also be investigated.
Please let us know how you go from here.
December 2, 2020 at 6:55 am #117795Ron BrunelleParticipant
I never had facial/head numbness. Along with the typical foot & leg, hand weakness and numbness, the only non typical symptoms I’ve experienced in my 4 years of CIDP, which in the past six months or so had begun to subside was trouble /labored breathing. This disturbing symptom was mostly present in the mornings. This is a rare symptom of CIDP but not unheard of.
Since my neurologist increased my Gamunex dosage from 45 grams to 90 grams for two consecutive days every three weeks my symptoms have begun to subside. No more breathing issues, the numbness is decreasing and my strength is starting to return.
I’m not a doctor but your facial issues may be a side effect of the other medications, or a combination of meds.
Hang in there and good luck 🍀👍
December 2, 2020 at 11:52 am #117797
I have a significant amount of facial symptoms. I get various degrees of burning and tingling to the right side of my face. This is involvement of the trigeminal cranial nerve, and was one of my first symptoms. The scig, prednisone and gabapentin have helped but it still is there at times. The sensations are the same that I feel elsewhere so I have no doubt that this is due to the cidp, and my neurologist believes it is cidp related. He has tested me extensively, and mostly everything has come back negative except protein in the csf. I have been tested for lyme multiple times as I live in a tick endemic area and this has come back negative. I have some tingling and burning to the distal third of the tongue but no loss of taste. It makes sense to me as most of the cranial nerves are considered part of the peripheral nervous system and are inflamed.
December 2, 2020 at 12:53 pm #117798
Thank you folks for the feedback so far.
Mike, my story is extremely similar to yours.
I was tested for Lyme 6-times actually. Living in California Lyme is not common but I had a target rash a few months previous that was exactly like the Lyme target rash. One of the doctors I saw (non-neuro) was a Lyme specialist and said he was doubtful I had Lyme. Also my neuro at Cedar’s said no Lyme.
I also have had extensive testing of course. My proteins came back way off using the lumbar puncture. Also my reflexes are all but non existent, especially in my knees.
On a funny note, I gave one of my neuro doctors a small 5-pound sledge mallet with the words “GBS-CIDP Reflex Hammer” written on it. We all got a good laugh out of it.
This disease can wear on a person. But we’re a tough crowd!
December 2, 2020 at 1:10 pm #117799
John just curious were you ever tested using the Igenex. I think they are based out in California but it is a controversial test from what I have read. I have only been tested using the standard IGG and IGM bloodwork, and my PCP actually even treated me empirically with a month of doxycycline.
December 2, 2020 at 1:49 pm #117800
I have not used Igenex for testing.
The first test was done when I had my first lumbar puncture and came back negative. I had this done right after I was admitted to the hospital and prior to any GBS/CIDP treatment whatsoever. The importance of this is IVIG can & will mess up the results. I had it done again when I was re-admitted due to a relapse a few weeks later. Then again when I had my 2nd relapse and was readmitted, this time to Scripps-Mercy in San Diego. Infectious disease doctor used blood this time. They have what is called a titer(?) blotter or some such. There are 10 blotters and they count how many, if any, come back positive. The tests results were all over the place due to IVIG being administered. The doctors gave me no treatment for Lyme. I take that back, I did receive about a week of I believe: doxycycline VIA oral while in Scripps.
December 2, 2020 at 2:15 pm #117801
JD, it is possible you have a rare variant of CIDP called Miller Fisher Syndrome (MFS). I had experienced many of the symptoms you described and was getting worse while on IVIg. I was afflicted with a combination of GBS/CIDP/MFS in 2008 and am now wheelchair-bound as a result.
While in the ICU at Cedars-LA for Pneumonia in 2009, I was advised by my neurologist to try Plasma Exchange (PE) for my CIDP/MFS condition. I did this when I was released from the ICU some days later. Within two days of my first PE treatment my facial/head-related symptoms began to abate. But PE, like IVIg, doesn’t work for everyone.
Although many of us with CIDP or a variant experience much the same symptoms, most have additional complaints too. This is one of the factors that can make diagnosis from a doctor difficult, especially from a doctor who has not been involved with a large variety of CIDP-related patients. This was my problem when I first got GBS, none of the doctors or neurologists who treated me had more than textbook experience with the disease.
The most knowledgeable doctor, researcher (discoverer of the Lewis-Sumner CIDP variant), and professor of Neurology is at Cedars-LA:
More info about MFS can be found in these forums and here:
December 2, 2020 at 3:22 pm #117802
Following my PE treatments at Cedars-LA, I was admitted into their intensive rehabilitation program for neurological disorders. I have undergone this program twice now and left each time with a little more ability than when I started. The neurologists on staff who helped me, recommended a specific type of power wheelchair to help me get back into some of the ADL’s I had lost. This made a huge improvement in my outlook about living with CIDP.
The Cedars-LA program has since partnered with UCLA Medical Center and created the California Rehabilitation Institute here:
December 2, 2020 at 4:35 pm #117803
Hi Jim. (John up here in Acton):
I have been seeing Dr. Lewis at Cedar.
As evident in all the various posts, is none of us are alike symptom wise. This is one tricky disease.
I had PE during my 2nd stay @ Henry-Mayo and it allowed me to get well enough to walk again and head on home. Then the most serious of relapses at Scripps for almost a month. One of the Oncology doctors there set me up with a regiment of Retuxin treatments and that really had me felling better and on my way home in a matter of a week. My current physician at Scripps, while I asked for it, has been extremely reluctant to use Retuxin. I am walking well and fairly stable except for the occasional drunken stagger. I believe Retuxin is for the severe, hence my not receiving another dose.
I should probably start a new thread with the whole story. There are a few oddities beginning around 2011. I will try to post this evening.
Thank you Jim for your in-depth knowledge and information you give on this forum. It is indispensable for the inflicted.
December 2, 2020 at 5:02 pm #117804
December 14, 2020 at 4:31 pm #117821DavidHParticipant
In response to the original question, I have essentially all sensory symptoms with little loss of motor functions. It includes numbness? tingling? in my mouth, lips and tongue. Not severe, but noticeable.
I just went thru about a 12 month period where I had no appetite-food lost its taste and appeal after the first bite or two-lost 40 lbs. Thought it might be related to the mouth issues. Then within the last month I still have the tingling, but appetite and taste have returned and I gained 6 lbs.
I want to find a balance where I can enjoy the food without putting the weight back on.
December 22, 2020 at 9:14 pm #117829
I have facial numbness. I can’t feel the razor blade when shaving as much as I used to. Also, not sure if it is my fingers or my face, but it feels like I am wearing a globe when I touch my face.
I also can’t feel needle sticks or when they start an IV on me as much as I used to.
January 7, 2021 at 12:12 am #117849
I am basically similar to DavidH with the major sensory symptoms. Lots of the good old tingling, burning, numbness, is it hot/cold(?) occasional electrical shocks. At least I can taste about 20% of the things I eat. Salt, sweet & bitter is what I can taste.
Mike & others the facial numbness isn’t good, is it. The eyes being numb is especially annoying to me.
I work hard to keep myself busy as it helps keep my mind off of all the annoyances. Constant nerve harassment 24-7. Sometimes I can’t tell if my feet are burning or freezing. But they keep walking so I’m so very grateful for that.
Wishing everyone the best.
January 9, 2021 at 6:04 pm #117872BryanFParticipant
When I first got CIDP, I lost my sense of taste and my face felt numb or tingled for months.If I get a bad flair up, my taste will go and I’ll get the facial tingling.
January 20, 2021 at 5:00 pm #117880fairly_odd_motherParticipant
My soft palate has been numb since I had gbs almost 15yrs ago. I have no gag reflex either. The right side of my face also has decreased sensation. Never diagnosed with mf variant.
February 13, 2021 at 5:16 am #117889Paul BuehlerParticipant
Hi, yes. I have had numbness and tingling around my eyes like a mask for years in addition to my feet, fingers and on and off inner thighs. The facial numbness sometimes is around my lips as well but predominantly around my eyes. It is a little better since 7 months of IVIG but still there and gets worse the more tired I am.
February 15, 2021 at 6:46 pm #117890
Thanks for chiming in. I am amazed at how many folks have the facial numbness since according to my neuro is “not how CIDP presents itself.”
Perhaps it should be considered to be added to the list.
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