Looking for help for my Mom

Hello everyone. I’ll try to keep this simple as I can. Last April my Mom was healthy and active accept for the start of rhmautoid arthritis. She developed the flu and became very ill. At the hospital we quickly learned she developed sepsis from a blocked gallbladder. She had influenza A. One oh her main heart arteries was clogged n various other things. Within days of walking into the hospital, she started going numb and could no longer walk or hardly feed herself. She had to be carried to the bathroom. She became completely disabled within days.
The hospital never tested for GBS. They told us she had critical illness neuropathy and it would get better. After a month in the hospital she finally left in a wheelchair. Her nerves are very damaged. But after a year she can finally walk( though not without effort) , her hands have limited use and she tires very easily.
I finally found her new doctors and he diagnosed her with CIDP. We have begun IVIG, but haven’t seen a difference yet after a few treatments. She may ask to try steroids this month.
Can anyone give us insight into what happened to her? She had rhmatoid arthritis bad and it disappeared, where is it? Lol. She seems to be continuing to get more numb even with treatment. She was diagnosed through a spinal , emg, and observations. Her emg shows nerve regrowth. We are frightened about the future. And trying to keep her out of a depression is difficult. She is 67, btw. Thanks!

My story is maybe close to your moms. Here we go. In 2013 my feet and started going numb and then I could hardly walk. I was diagnosed with CIDP with the same spinal tap etc. I had the IVIG but until I took the steroids nothing had ever happened. I told the neurologist the IVIG did nothing, so on and off them we went. I talked him out of the IVIG and then in 2018 I got a second opinion. Now I have something called POEMS Syndrome., Which the same things don’t work. I found out through a CT scan that I had a tumor on my spine, so I had it removed and rods in my back to strengthen it. I had radiation to kill the cancer, and later I started to get stronger, without the IVIG and the steroids I have been dropping 1mil every 3 weeks till I get down to zero. I am at 4mil now. by the way I am 60 years old. And yes it is very hard. Four years of this and the cancer could come back at any time! Hey just enjoy

Thank you so much for your reply. Sometimes we do wonder about her diagnosis. Unfortunately because of many experiences my family has had with hospitals and doctors we are a bit skeptical. I pray for you that you are rid of the cancer for good. We are hoping that adding steroids may help. She has had to wait till her operations were all over before they will allow steroids. It’s been so difficult to see “ our rock” suddenly disabled and no real clear picture of the future. I hope you are doing much better since they discovered the cause.

I always think it is good to get a second opinion. I have had CIDP for ten years and have slowly been losing function. I think you should make sure she actually has this but once you have two opinions (one of which should be from an expert in CIDP), then try some steroid with IVIG. I recently added Cellcept which so far I am tolerating well. I agree hospitals and doctors are frustrating. The fact that already has one autoimmune disease makes it more likely the CIDP is a possible diagnosis. However, look for an expert, taking all the test results and see if you can get a confirmation.

Hi thank you for the advice. Since CIDP is rare, what type of doctor would be considered an expert? The neurologist she is seeing is familiar with CIDP and seems informed and up to date on the latest treatments. Who else would one seek for a second opinion. Thanks:)

I’m a 63 year old that experienced the same basic thing. GBS then CIPD with numbness taking over my body. At my worst, I had trouble going to relieve myself and taking a shower.
I wish I could tell u it was a quick recovery but it was years of slowly becoming better. My five year anniversary will be in July. I was just at my Dr. and all my reflexes have come back. My dizziness is almost gone.
I do have to take a lot of medication to get this result. Medication is different for everyone, u have to find what work for u. Good luck.

Numbs, so sorry to hear about your experiences. Who knows what happened, but I hope you do seek a second opinion and keep pushing for the next treatment until something works for your mom. If you are near a teaching university hospital, find a neurologist affiliated with the hospital. They tend to be on the cutting edge of treatments. My husband has had steroids (IV and oral), IViG, and now is taking Rituximab because nothing has helped. Keep pushing and consider an antidepressant for your mother.

The CIDP international association has different centers of excellence that can be looked up from their website by simple google search.
Many times cidp patients don’t respond immediately to IVIG. Possibly increase dosage or frequency of infusion or both until a positive result. If none is forthcoming, try the new drug just approve. I had bad roid rage from steroids and would not personally recommend. But I did go into remission while on them for a year.

Thank you. It’s such a confusing disease that seems to lack rhyme or reason. Mom is trying a new IVig med in a week, so maybe we will see some change. She did well on steroids when she had rhmatoid arthritis, which oddly disappeared when CIDP came on the scene, so we are hoping they may help. She needs to wait a few more weeks to start them since she just had surgery. Thanks again for the reply!

How long has your husband been receiving treatment ? Have they considered the plasma exchange treatment , the name escapes me. The one where they clean your blood of antibodies? Keep in touch let me know if you guys get any relief. Praying for you both.

Oh and yes, my mom has been on depresson meds for years. I’m sure she needs a new one, this one has run its course and lost its effectiveness. However she sees the hell ive gone through for 3 years trying to find a new med that works well for me and she doesn’t feel she could handle the possible mental roller coaster right now.

The neurologist has isolated the particular antibody that causes my husband’s neuropathy. Plasma exchange would essentially dilute the concentration of the antibody, and the hope is that Rituximab will cause is body to completely stop producing it, which is why that was the choice over PLEX. He also had terrible skin rashes from IViG - sores that popped up 5-7 days after the treatment and caused lots of scarring. His doctor felt the rash was bad enough that he shouldn’t repeat IViG for a while anyway. I totally understand how you and your mother feel - wouldn’t want to go through a new depression medication trial either. I know my husband is depressed, but I also don’t think a medication will help him in his current state of mind - right now he wants to die because he doesn’t see any hope of improvement and living this way gets more intolerable by the day. Depression medication won’t change reality. My heart hurts for your mom, and you as well.

also, he has been receiving treatment for almost a year - the first 6 months the doctors thought it was a mild case of GBS and didn’t treat.

OMG, I feel for you both so much too! What my mom and your husband are going through is sooooo hard on people mentally and physically. And it seems like so much is unknown and guess work. Sometimes people say the CIDP will just go away after awhile and that feels like such a pipe dream , but somehow it happens for some. We’d be happy with just some improvement for now. We have faith, but even with faith it’s still hard not to ask why the hell did this happen?