Reply To: CIDP and facial/mouth numbness

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