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Living with Polyneuropathy CIDP, GBS, & CMT

Recovery

As a recently diagnosed and extremely frustrated CIDP patient, I was very dismayed when I could not get my desired response several weeks ago about what recovery felt like (I posted on various websites for folks like us). I greatly appreciated the responses and understood the common theme of "everyone is different" but it wasn't what I was looking for. Today, I want to share my experience so far in hopes that it is helpful to my other kindred spirits who are dealing with CIDP.

Brief synopsis: Tingling symptoms started March 2014 while pregnant. Numbness in feet got scary in mid-June, balance was very off. Hands and legs were horrible by birth of baby August 7. Could barely walk without major assistance. Visited neurologist in March but only have hyper reflexes. Turned down MRI since I was high risk and couldn't do anything until baby was born (they thought it was a disk). Two days after coming home with baby, went back to neurologist. Had MRI that showed a slight bulging disk but nothing that would cause my problems. Then, did lumbar, EMG and nerve conduction, and lots of blood work. Neurologist suspected CIDP (he had a GBS patient a year earlier) and confirmed it after lumbar puncture. Started IVIG 5 day loading dose, followed by .4g / KG every two weeks.

Recovery: I found myself very slowly improving when I first started my loading dose. I had extreme numbness in feet an hands and large portions of my legs, including my buttocks. The first thing I noticed was about 5 days after the doses, I realized I could feel temperature on my feet. I had not realized I couldn't feel hot and cold on the bottom of my feet. From there, I noticed that a few days before my next treatment, I was extremely sluggish, weak, and felt like I was going backwards. Once I had the infusion, I felt much better (not great but an improvement). I felt like I was on a chutes and ladders game board. My doctor mentioned I could add prednisone but that it could potentially be an issue with the insurance company and that IVIG was better. Plus, we could know which treatment was making the difference. Just a note, I tolerated IVIG well and had no side effects like headaches, flu like symptoms, etc.

Even with a little recovery, I was going way to slow for this formally independent, full-throttle person who now was barely hobbling around with assistance and could not take care of a newborn. The next appointment I went to, I broke down and asked for prednisone. I was miserable and willing to accept the nasty side effects if I could get better. The doctor obliged and I was started at 120 mg, every other day, and a strict tapering schedule. Meanwhile, I was not sitting around. He and I had already talked about going to get a second opinion. We got my records up to Johns Hopkins to see David Cornblath. Within a week, I was canceling work and finding a baby and dog sitter so we could go to Baltimore.

Dr. Cornblath saw me immediately and was very thorough. He did not rush me through an appointment. He asked great questions, examined me, and did another EMG. What he did was fully confirm my diagnosis. Although I was on the right treatment, I was not on the right amounts. He put me on 60 mg of prednisone every day and 1 g / KG every three weeks of IVIG. This was exactly a week before my sister's wedding.

Within a week, my hands showed a remarkable recovery. I started walking with a somewhat normal gait on my rollator. I noticed my legs didn't shake like leaves. The next week my weak legs got stronger. Much less numbness, very little anywhere. Tingling feet and numbness down there but MUCH better.

This past week, I started walking with a cane with confidence. I walked a mile pushing the stroller in 40 mins. I couldn't walk from couch to kitchen without feeling like a ran a marathon two weeks ago. Three days ago I walked up and down my outside stairs, holding the rail but with no assistance, slowly. Yesterday, I went back to the gym for the first time and did the recumbent bike for 30 mins and the ab machine for 10.

Today, I am sitting at the infusion center getting my first new big dose of IVIG. Our game plan is to start tapering me off prednisone next time I visit Dr. Cornblath but will stay on IVIG.

I have no idea if I can keep up with this level of progress but I am thrilled to have it. I am thankful. As a professional harpist, I hope to be back in shape playing soon. I want to drive again. Most importantly, I am ready to relieve my husband from diaper duty, which I have not been able to do since I can't walk and hold the baby. (You know it is bad when you know exactly how many diapers you have changed and you have a 10.5 week old).

I will continue to give updates. I am staying positive. I hope that my experience will help others like me find hope and encouragement.

I am happy to hear that you are seeing results from IVIG. Timing and dosage can be very important. However, I would like to say be very cautious. Some people do go into a long term and even permanent remission. I hope you are in that group. But, many relapse again. CIDP becomes a long chronic illness. Dr. Cornblath is of the opinion that once you have reached remission you should be able to go off treatment. ( I have read many articles from him on the CIDP-GBS INTERNATIONAL website and newsletter.) I would just caution you there are many of us CIDP patients who have tried to go off treatments only to relapse worse than the initial symptoms. I am one, but have talked to many many others with the same scenario. Be vigilant about symptoms. Trust your instincts. I don’t want to seem such a downer but I wish someone would have told me that relapses can happen. They can happen years after being fine. Best Wishes for a full recovery. Mary B.

PS- I went on to have a Stem Cell Transplant at Northwestern in Chicago (Dr. Burt) and am now

disease free. Dr. Cornblath would probably not mention this as an option either but if treatments do not completely put in remission, you can check it out yourself. It’s an NIH study and info is on Dr. Richard. K Burt Stem Cell FB page. Also, steroids will give you that instant great energy but they are hard on your body long term.

You are very lucky they caught it early~ recovery odds are greater!! QUESTION: in 2013 did you go on any antibiotics or have any infections?

Also: You may find this interesting (Related to auto immune and diabetes with food trends!)

https://www.youtube.com/watch?v=dBnniua6-oM

Best Wishes

Hi. I hope you recover 100%. It took me 10 yrs to recover plus minus 70%. I still can’t run and my feet pain. I have lost the reflexes in my knees and elbows permanently. It all started with a very worst case of CIDP. I was treated with Plasmaphoresis and after that with IVIG every 3 months for 5 days. It helped me recover to such extent that I am able to walk and work again. I still have pain and numbness but it is much less than 10 yrs ago. I’m on a diet - only fish and game meat and fresh fruit and vegetables. Sometimes I get a relapse but then my doctor just give me a course of IVIG and after one or two weeks I am much better. CIDP takes a long time to be cured in some people but it can also be cured very fast in some people. Don’t ever give up hope, you will be much better soon. Good luck.

Good luck on your recovery, Youth and early discovery, treatment and high quality medical professionals makes all the difference. Unfortunately, I had none of these things available to me, on an outer island (Maui), when my CIDP was diagnosed. IvIG (240 grams/month + Imuran) treatment provides me with only a 75-80% recovery of the majority of my muscles.

As a former professional classical guitarist, I needed 110% of the fine muscles in the fingers of both hands, as you, as a harpist needs. Trying to play professional gigs, failing to bring them off, soon filters back to agents. There is always another guitarist, ukulele virtuoso or crooning Hawaiian duo waiting in the wings to take the the few high-paying hotel gigs here

The night I decided to stop playing Kurt Mazur and his wife were in the audience (at a Ritz-Carlton restaurant) and I was playing a set of songs by Villa-Lobos. They sat right in front of me, the tension mounted and I flubbed song after song. He was not elated or pleased by my playing.

After a few months of success with IvIG I tried to play a few gigs, sit in at friend's gigs and I attempted recording, but the right hand, that I worked so hard to train... a thing of the past.

Good luck!

I would say with in broad terms my disease impacts and my recovery are similar to yours except I had no response from IVIG but have from solumedrol ( a prednisol type drug). Also, obviously, I had no complications of pregnancy. I was really knocked down and could barely walk from end of April until September. Now I get stronger week by week and have less (but some) impact on my hands and especially feet. I can manage a 1-2 mile hike now , but I still tend to sleep a lot , drop things and so on. My feet are working OK but I still feel like I am wearing caterpillars. If things keep getting better I will be very happy. I have been on solumedrol now for two months + and have no adverse impacts , at least in the things we have tested for, but we are thinking of going from one gram per week to one per two weeks.

I went to one of the nation's experts in Boston and he confirmed most of the analysis/treatment I was getting in Kalispel Montana .. he said I was getting excellent treatment. But most of this is still a shot in the dark, I feel, as the disease and its treatment remains empirical (like many of our ailments). Fortunately I seem to be responding to . the second drug.

So Your story sounds like mine -- hope it keeps going that way. But I have gone from being in rela bad shape to being able to do most of the essentials of life, and I am still getting better it seems. Yes there is hope...

Charlie

THIS IS A GREAT VIDEO! Unfortunately, few people will hang in there to watch unless they are well versed in biochemistry or molecular biology.

Also, the politics of the American diet is backed by the sinister powers of the Skull & Crossbones Society of Yale and the football lobby... kidding, but not really.

Loni Hart said:

You are very lucky they caught it early~ recovery odds are greater!! QUESTION: in 2013 did you go on any antibiotics or have any infections?

Also: You may find this interesting (Related to auto immune and diabetes with food trends!)

https://www.youtube.com/watch?v=dBnniua6-oM

Best Wishes


I can't imagine the frustration of compromised finger dexterity and trying to play the guitar. We have friends who live in Maui, they owned Stella Blues restaurant, and we are hoping to visit in Feb. I'm hoping the warm salt water will help the leg and back pain. If you see a wobbly walker on the beach it might be me! Peace
estaban said:

Good luck on your recovery, Youth and early discovery, treatment and high quality medical professionals makes all the difference. Unfortunately, I had none of these things available to me, on an outer island (Maui), when my CIDP was diagnosed. IvIG (240 grams/month + Imuran) treatment provides me with only a 75-80% recovery of the majority of my muscles.

As a former professional classical guitarist, I needed 110% of the fine muscles in the fingers of both hands, as you, as a harpist needs. Trying to play professional gigs, failing to bring them off, soon filters back to agents. There is always another guitarist, ukulele virtuoso or crooning Hawaiian duo waiting in the wings to take the the few high-paying hotel gigs here

The night I decided to stop playing Kurt Mazur and his wife were in the audience (at a Ritz-Carlton restaurant) and I was playing a set of songs by Villa-Lobos. They sat right in front of me, the tension mounted and I flubbed song after song. He was not elated or pleased by my playing.

After a few months of success with IvIG I tried to play a few gigs, sit in at friend's gigs and I attempted recording, but the right hand, that I worked so hard to train... a thing of the past.

Good luck!

Harpa2000 and Estaban, I wasn’t aware there were other musicians here to talk to. I kept my day job but keep active playing sax with a quartet these days and in large ensembles in the past.

For me, the numbness is my primary obstacle but unlike harp or guitar, my fingers can stay put once they have found playing position. So, it’s only now and then that my fingers get lost and I have to visually place them in the right place. At home, I use a mirror propped up on the music stand to reposition, which also allows me to find where my pinkies go for the multiple keys they play. On rock and roll gigs I used to play, though, I’d sometimes get lost in the middle of a solo and have to stop, point the key-side of the horn to my face and reposition before continuing. Embarrassing to say the least.

I start my very first IVIg this coming Monday and Tuesday, play my new saxophone quartet’s first gig on Thursday and then finish off the 4-day course for the month on the next 2 days. I’m playing soprano sax in this group and we’re playing Mozart “Marcia Turca” with all the fast notes assigned to me so I hope I don’t crash and burn!

My motor nerves are much less affected by the CIDP, but there’s definitely some loss and I’m hoping to reverse that or at least stop its progression.

Estaban, do you play anymore at all? Harpa, how are you getting along on the harp? How is your pedaling? I have trouble finding the sustain pedal on a piano, never mind all the pedals on a harp.

Just seeing your recovery story. How are doing now. I ve been in wheelchair for over 4 months. Late diagnosis but doing better now. On predisoline and some other drugs. Not good side effects but thats all we have here in Ghana for treatments. Can walk a but now . Dared to be driving too.