January 29, 2020 at 4:28 pm #117431
I was recently diagnosed in October 2019 and I am wondering if I truly have CIDP or if there is also something else causing my symptoms.
My symptoms started in June with fleeting pain on the right side of my head that lasted 5 -10 seconds. It was unlike any pain I ever had. Went away so I didn’t think much of it. Symptoms the following day then included increased sensitivity to the right side of my face and tingling in hands and feet. Symptoms progressed over the week and my balance was off, was stuttering over my words and legs started to give out. You could see fasiciculations in my legs and by the time I was in the ER could barely walk, but had brisk reflexes. Was admitted for a night and did have protein in my csf. The rest of the labs and scans workup were normal. They sent me home with outpatient neuro follow up after they saw me and an outpatient emg of one arm and leg were normal.
Over the course of the next week my symptoms continued to progress. Burning started moving up my trunk, bowels slowed down, and I started to have paranoid delusions. Back to the hospital 2nd spinal tip in a week, and admitted for 5 days with IV steroids. Things did slowly improve over the 5 days and when I was sent home I still could barely walk or even shower. Slow improvements from about June to September. Was back running and playing with my children. Things got worse in Sept after a common cold, so I called neurology. They tried oral dexamthasone, and home iv solumedrol without improvements as my legs kept getting weaker and the day I ended up back in the hospital I had wet my bed. This time I was treated with IVIG and iv solumedrol for 4 days with some improvments. No more bed wetting but legs still weak and tired.
I feel the neurologist has been very thorough with his testing, scans, labs paraneoplastic antibodies. All have been negative. He has as referred me to both oncology and ent for a salivary gland biopsy for possible sjogrens. He also has me receiving ivig every 2 weeks along with weekly solumedrol and oral prednsione.
Since being out of the hospital I continue to have waves of tingling in my legs, trunk, right side of face. Short term memory has been poor and at times I am confused. Vision continues to be blurred and double at times with floaters. It looks like I am wearing red gloves that my neurologist feels is related and is small fiber neuropathy.
From what I have read it seems that cidp is peripheral, but I also seem to have cns and autonomic involvement. I really feel my neurologist is doing a good job, is always accessible the same day by email, and is never rushed with me as he spent almost an hour an a half with me at last ov. Plus he has treated upwards of 100 cidp patients. I really feel that I have fallen in the hands of a great, and experienced neurologist.
Not sure if anyone has had any of the cns symptoms, and I don’t know if I should get a second opinion at one of the excellence centers or maybe I am just chasing rainbows or a magic bullet at this time?
January 29, 2020 at 8:05 pm #117432AusvoltzParticipant
Hi Mike sorry to hear your not going so well. I was diagnosed with CIDP 2 years ago everyone seems to be different but what you are describing seems to be quick onset which is not normally associated with CIDP more like GBs but my sister had similar symptoms with MS. There are so many different autoimmune hope they get on top of it quickly.
January 29, 2020 at 9:46 pm #117433Jim-LAModerator
Hi Mike and welcome to the forums.
My symptoms started similar to your description and I had GBS/MFS (Miller Fisher Syndrome). MFS is a rare, acquired nerve disease that is considered to be a variant of GBS. It is characterized by abnormal muscle coordination, paralysis of the eye muscles, and absence or impairment of certain head and/or facial abilities, such as speech. It can affect breathing as well.
Here is some info about MFS:
Has your Neurologist suggested Plasma Exchange (PE)? This is a way of removing the attacking antibodies from your blood. PE was the main treatment that worked for me. IVIg never did much of anything in my case. There are numerous forum threads discussing PE, simply do a forum search for them.
Here is a doc that might help you and your Dr better understand what is going on in your case:
Wishing you the best of luck with your recovery.
January 30, 2020 at 9:03 pm #117436
I had similar symptoms though not that extreme, and it didn’t come on that quickly but still quickly enough. The worst was the itching/burning sensations in my legs and rapid weight loss. After being diagnosed and starting Prednisone, I was feeling much better within a couple days. At least enough that I could sleep and take care of daily things around the house. I’ve since also been put on IVIG, but after 2 rounds of treatment, can’t say I’ve seen any significant improvement however enough to be noticeable.
January 31, 2020 at 8:18 am #117438
Thanks for the input, and the articles. I initially responded to iv steroids when I was first hospitalized. The third hospitalization steroids didn’t help as much so next came the ivig. Not really sure how the ivig is supposed to work, but on the days I get it I feel awful, and then the same for the next few days. I describe to family and friends as that you could wipe the floor with me. 2-3 days after the ivig I feel a little better, walking a little better, and usually 2-3 days before the next infusion gait is not that great.
Not sure how others respond to the ivig but I guess everyone is different?
Weight loss has been an issue for me as well. Lost 14 pounds first hospitalization, regained it back. When was re-hopitalized in October lost 10 pounds and have had a hard time regaining it back. Having a hard time maintaining my weight considering my ravenous appetite from the steroids. Usually by now with the holidays last month I would have put on 10 pounds but actually lost an extra few pounds. I guess if there is any silver lining with this at least the cidp helped keep the holiday weight off.
January 31, 2020 at 6:14 pm #117440DavidParticipant
I think one thing most patients don’t take into consideration is that by the time they get symptoms and find out they have CIDP, their nerves are already damaged at this point.
Then when we get treatment from whatever source we have some level of relief but the deal here you really won’t feel back to normal until your nerves have time to actually repair themselves and heal. This takes every bit of 6 months. When I started treatment, it took me 8 months before I was able to start using my legs athletically again (running with distance), even though I functioned mostly normal quickly after treatment, just not able to really do a legit run for a workout until healing took place.
In order to have healing, you need to knock down your immune system so it stops attacking your nerves. I did this with 6 months of Prednisone and Cellcept which I still take twice a day and have no side effects. Of course, this may work differently in other people but luckily this was a great course of action for me. During those first 6 months, I had ups and downs but stuck with it and was lucky in the end that healing was occurring and ended up recovering well.
I don’t have experience with IVIG, but I suppose it knocks down the immune system but needs replenishing about every 4 weeks. I like taking a pill every day vs getting hooked up to a machine. Plus I don’t have any effects of before and after the monthly IVIG session, I read here about.
January 31, 2020 at 8:11 pm #117441
I lost a lot of weight too. From December ’18 up until around June when I started the Prednisone, I went from a healthy 180 to 145. I’ve only just gotten back close (178 this morning) to where I was but have to say it’s mostly flab whereas before I was in fairly good shape. Protein shakes do help some to get calories without loading up on carbs. The best, cheapest, ones I’ve found are the Equate ones they sell at Wally World.
January 31, 2020 at 8:18 pm #117442
I brought up Cellcept to my neurologist and she wasn’t fond of the idea. She claims to have patients on it but for some reason prefers to push IVIG. Currently I’m on 30g x 3 of Privigen every 4 weeks, plus 30mg of Prednisone daily. Due to the shortage, I’ve only just began IVIG in December so only 2 rounds so far. As I mentioned already, I’ve only noticed minimal improvement.
It did take months before the doctors could figure out what my problem was and get a diagnosis. I’m sure a lot of damage has been done though I’ve never reached the point where I couldn’t walk or drive when I have to. At worst, I’ve only experience a bit of wobble in my legs during the early morning before taking my steroids.
At this point, I’m not looking forward to the huge inconvenience of 3 days of IVIG every month. I’m hoping to find a trial somewhere for stem cell therapy.
January 31, 2020 at 9:23 pm #117443
January 31, 2020 at 10:29 pm #117444DavidParticipant
Looks like your case isn’t overly horrible. I mean it is all horrible but could be worse. I was probably similar to you or maybe only very slightly better. You just have to give it time and I think you will get better. I’d push for the Cellcept, it makes sense and works, especially if you are done having kids. They say after about 60-90 days after starting Cellcept you can get off of the Prednisone. It doesn’t make sense to do IVIG and Prednisone indefinitely. As for Stem Cell, I felt like you initially during the process. I even called them up and they told me they wouldn’t even talk to me until after I had 6 months of traditional treatment. Glad I waited because chemotherapy is a bigger deal than we think it is in my opinion.
February 1, 2020 at 12:11 pm #117445
I agree the ivig is an inconvenience, as I get it over 2 days every 2 weeks. I have only had 4 or 5 outpatient infusions and I am still unsure if it is really working but the neurologist says it will take time and to be patient. He has stated that the hope is the disease burns itself out while getting the IVIG and steroids and that the body repairs itself slowly over time. I have been approved for 6 months but he wants to give it a year providing things don’t go in the wrong direction. Not sure if the area you live in offers in home infusion? I have a home health nurse who comes to my house and retreat to the basement for about 4hours but at least it is at home.
My neurologist has not mentioned Cellcept but has already brought up rituxan. I think he is thinking further out which I really appreciate if the IVIG and prednisone don’t work. Both cellcept and rituxan scare me as I have two young children at home ages 4 and 1 who are always sick with some illness.
As if this illness isn’t enough to deal with my insurance has denied my oncologists request and peer to peer review for the ct scans of my chest, abdomen and pelvis looking for cancer.They deem it not medically necessary. I can’t imagine they would cover the rituxan or the cellcept if I have to go that route.
February 2, 2020 at 4:51 am #117446
I am getting my infusions at home, which is much more convenient. Is set up the pump next to my recliner and watch prolefeed while the IV is running. It only takes about 2 hours but the nurse has yet to show up at the scheduled time due to various reasons given so it does make it nearly impossible to count on being able to plan any types of activies for those days. Also the last time, they neglected to send out the Privigen on time so had to put it off a day, then another day when UPS delivered it to the wrong house.
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