my father is paralysed neck down.

Unfortunately, the prognosis probably poor, but his neurologist must give the authoritative medical opinion. Generally, earlier treatment leads to better recovery. Even with early treatment, there is a great deal of variation in these neuropathies. Maximum recovery is usually reachd in from one to three years. But one must always hope if there is any possibility. Have there been any signs of improvement since starting plasma exchange?

I was paralyzed below the neck for a few weeks, and a paraplegic for a few months. I was given plasma exchange after the initial IvIg treatments seemed not to help. I started to respond after a few PE treatments and was then switched to drugs. I was nearly fully recovered after a couple of years.

I was almost that bad; started Nov 2013… I was hospitalized Dec 27 after two ER visits and 2 dr visits, the last three visits in wheelchair. I was an avid work out person; almost every day… no red meat, health nut. I did have a bad flu shot in 1995 that made me sick in bed for two weeks; other than that for the last 30 years I had been very healthy. Don’t even get colds. I was sent home from hospital Jan 3 with walker, and went downhill slowly. My husband called the drs office/hosp everyday for three weeks, they seen me again, and by then I could only move my head and neck and finger s little. I was sent home from rehab Feb 3rd; bed ridden, no hosp bed at home. My husband took good care of me. We finally got IVIGs approved in March and April my thigh came back – I was able to sit up and use my arms better. No more strength has come back noticeably, buy probably slowly. It’s been almost a year since any significant improvement. I can’t stand up; feet are extremely painful to touch; still in bunny boots. Had spinal tap and two EMGs; positive results for CIDP. I am trying to be happy from my bed, and use wheel chair … well not really, just to go to PT, three times a week. I am accepting and not depressed, so that is a plus. I’m trying my best. But Wow.

hiba24, So sorry to read this news about your father. I noticed you said “here in the uk cidp is quite rare.” There is a support group in the UK, maybe you know of it.

http://www.gaincharity.org.uk/

do not let the ‘gain’ discourage you. It seems to stand for Guillain-Barré Associated Inflammatory Neuropathies

It is certainly discouraging to be in the minority and get the disease, even worse to respond so poorly or not at all. Some studies suggest that some patients still have severe disability (unable to walk) or treatment dependent relapses no matter which treatment regimen they are given.

I hope you find a treatment program that works for your father.

my partner was the same way, and ended up coding and being placed on a ventilator. Didn’t respond to ivig or Plasma Exchange.

The neurologist tried Rituxan, 375mg once a week * 4 weeks. Today, is moving, walking, talking… alive.

It is worth a try.

My partner was completely bed ridden and paralyzed up to the neck, including vocal chords. On a trach vent, lungs also were paralyzed partially and she went into respiratory arrest one night. After 50 minutes of CPR and 3 resuscitations, they brought her back. At that point I asked the neurologist for anything else, because she failed IVIG, PE and steroids.

She got the Rituxan, and because of her conditions, he was careful and adminisetred 375mg once a week for four weeks. She started to show some movement within a day of receiving the Rituxan, however one does not benefit fully from the infusion for 4 – 6 weeks.

She is not on a 6 months maintenance schedule and is walking, cooking, cleaning … and alive.

I’m so sorry to hear about your Father but I am right there with you. My Mother is the very same. Only given the diagnosis three months ago, but shown symptoms for years. Now in the hospital for second time, paralyzed neck down, she is 77 years old. My Sister and I are struggling. This is rare and we do not want to give up hope but are hearing there may be damage to the nerves due to time prior to diagnosis. What do we do? How do we take care of her properly and work and take care of our own families? She and Dad want to live at home, Dad is so fragile himself. Doc Tried: Steroids: She reacted poorly, IVIG, she had bad side effects. I do hear you can pre-medicate? now doing a “round” 5 days maybe more of Plasma Pharesis. They “say” some improvement? “a pump of her foot”. Am I to get excited about that? If yes, please tell me. Also, does anyone know if CIDP affects the speech? Mom’s speech has been affected, can only string together three words on a good day. I believe it is the diaphragm affected. I am with you. I feel like we are kindred spirits. UK/USA, we are in the same situation, and I hear CIDP is rare no matter, especially to the extent our parents have it. When someone asks, I say we are hopeful. Hang in there my new friend, lets stay hopeful! Can someone with more knowledge keep us hopeful please?

The paralyzation from CIDP can most certainly affect speech. The vocal chords can also be paralyzed, along with the respiratory system.

I don’t want to be the bearer of bad news, but this is a very critical time foe the neurologist to find something to help.

As I advised above, when the standard treatments are not effective, it is time to look at chemo. Rituxan would be first. That targets the B cells. If those are the “sick” cells, the Rituxan eliminates that part of the cell.

If that does not work, them you need to look at targeting the T cells, and that chemo drug starts with a C… I forgot off the top of my head how to spell it, so I am not going to try.

Eventual respiratory failure is responsible for many of the CIDP patients our neurologist has treated (over the past 25 years).

Now is the time to fight for her life; you don’t have much time.

I was a whining garden slug with CIDP, walking was out of the question, arms could use the TV remote with effort. When I increased the IvIgG to 240 grams each month, I reverted back to my old wonderful self. I did have to leg-wrestle my neuro to get the IgG increase.