CIDP and facial/mouth numbness

I’ll start off with a “no”. I did not have any symptoms at all from the neck up.

Good luck to you!

Yes you can have these issues I have mild numbness but it’s increasing.
https://onlinelibrary.wiley.com/doi/10.1111/ene.14497

Hi John
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.
Kind Regards
Walter

JD.
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 🍀👍

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.

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.

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:
https://bio.cedars-sinai.org/lewisra/index.html

More info about MFS can be found in these forums and here:
https://www.gbs-cidp.org/variants/miller-fisher-syndrome

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:
https://www.cedars-sinai.org/programs/physical-medicine-rehabilitation/california-institute.html

JD,
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.

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.

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.

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.

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.

My case of CIDP involved recurrent relapses of the left 6th nerve causing double vision and weakness of muscles around the left eye and involvement of the trigeminal nerve, on the left side, which gave me a numb jaw, and left side facial muscles, a numb tongue, and some slurred speech.  I just considered this another CIDP attack on a nerve, in addition to the other limb weakness.  I felt like the facial numbness occurred during more extreme relapses.  Thankfully in remission for several years with Hizentra.