Regression after PE and transfer to rehab

    • Anonymous
      June 24, 2007 at 9:35 am

      We were transferred to a nice rehab institute in Minneapoils after our almost two weeks in the hospital at which point my wife was mostly paralyzed – didn’t need a vent, though.

      About 4 days after her last PE (7 total) / a day or two of being at rehabilitation, she started regressing. She can barely pivot with assistance and her hands / arms have started feeling heavier & number again. We saw this progression at the beginning of this month as she was on decline.

      Yesterday she got a first treatment of IVIG – she’ll be getting 5 treatments once per day.

      If anyone has had a similar experience, I’d love to hear how things went with you. Doctor mentioned the possibility of “CIDP” but boy – her onset was sudden… her low point came only a week after symptoms.

      I had stumbled upon an article that mentioned GBS-TRF (treament related fluctuations) and something called A-CIDP which both seem to be reasonable “explanations’ for my wife’s experience.

      Anyways, very thankful for any feedback you might have!


      wife / Sarah

    • Anonymous
      June 24, 2007 at 9:49 am

      Hi Chris, sorry to hear Sarah has been having more problems. A dx of cidp is possible after having relapses. CIDP is like the Chronic form of GBS. My dx was changed/made from GBS to CIDP after i had 5 relapses. If the IVIG has a similar effect as pe, and Sarah relapses the likely cause would be CIDP. At which point other treatments should be tried to get her into remission for as long as possible. Take care.

    • Anonymous
      June 24, 2007 at 6:41 pm

      Hi Chris, please say hello to your wife for us. The IVIG attempts to stop the attack on her nerves. She is getting the loading dose now it sounds like. Many of us required a combination of treatments before getting better. I would hope that she has reached her nadir and her rehab will start showing improvements for her. Nice to meet you.


    • Anonymous
      June 24, 2007 at 7:42 pm

      I dunno if it helps, after a week in ICU they thought I’d stabalized too and transferred me to a special care unit. I crashed badly that night or the next (can’t remember) and went straight back to ICU. They didn’t have IVIG back then but that’s when they started my plasma pheresis (sp? sorry). I just seemed to have had a hiccup in the progression. I did end up just a GBS diagnosis and “full” recovery.

      Keep us posted. Let her know we’re thinking of her (and you!)

    • Anonymous
      June 25, 2007 at 11:09 am

      I think it is way too early to mention CIDP as her dx. For one thing her initial onset was very quick, & it is possible to have setbacks along the way with GBS just by overdoing PT. I was dx with CIDP after 6 weeks of my initial one month decline, but never showed any improvement in between. I am glad she is getting the IVIG & at this point still think she has GBS.

    • Anonymous
      June 25, 2007 at 12:27 pm

      My daughter (33 yrs old with a 20 month old baby and a 39 yr old husband) is also in a rehab hospital in Minnealoplis area. She’s been hospitalized since May 11, 2007 with GBS (we think so far). She is vented, so is likely in a different hospital than your wife Sarah. Similar to your wife, however, my daughter also had regression which raised lots of questions in my mind. She also had plamsapheresis (10) but no IVIG. Regression occurred within days of her move to the rehab place.

      What are the neurologists’ names working with your wife? My daughter was at North Memorial initially in acute ICU and had Dr. Mack as her primary neurologist; Dr. Germino as pulmonologist; and Dr. Vollar as intensivist. I live 6 hrs. away so am unfamiliar with quality of any health care/provider in the Twin Cities area. I don’t even know who my daughter’s doctors are now at this long-term acute care rehab hospital. I hardly ever hear about them and since I live so far from her, I have even less of a chance of seeing them.

      Besides input on doctors, I’d like to read the GBS-TRF article you stumbled across.

      I’ll be in the Twin Cities visitng my daughter from June 28-July1.

      Chris, I’m sorry I don’t have any answers for you. Lots of sympathy, empathy, and support going out to you though.

    • Anonymous
      June 25, 2007 at 5:14 pm

      Thank you all for your continued support.

      She’s still in Sister Kenny and her grip strength test have stabilized. She’s mentioned a tingling has returned (which has prefaced improvement times). She’s a touch weaker from yesterday but I think the key is stabilization. I think the overall direction of state is almost more important to us than the actual state of her condition. If we get back to an improving direction, that’s super.

      Jane, I actually tried to send you a private e-mail because of the age of your daughter (my wife is turning 32 – so she’s quite close in age). We actually live less than a mile from North Memorial. There’s an inpatient rehabilitation facility there at North Memorial but we opted for Sister Kenny. I hear both are good – once your daughter improves.

      My wife also had plasma transfer (7) and started regressing within a few days of inpatient rehab. I am thankful she has not declined greatly and I offer my sincere empathies to you. She’s getting her third IVIG today. Neuro did say that CIDP is definitely not what she suspects.

      The article I found on GBS-TRF vs. A-CDIP is here: [url][/url] – I haven’t come across any article that mentioned the acronyms specifically as such, so I’m not sure how worthwhile it is.

      Jane, please feel free to contact me via e-mail directly – with the proximity, my wife and your daughter experiencing to some degree some ups and downs with GBS (admittedly your daughter has had it far tougher), and them being within a year of age – it could be a nice connection if both are interested. No worries if not. My e-mail is [email][/email]


      edit: our first neuro was Dr. Murphy and Dr. Francis – had them up at Mercy Hospital in Coon Rapids. We have different neuro’s here – I think we had our “permanent” one assigned today but I don’t recall her name.

    • Anonymous
      June 26, 2007 at 1:03 pm

      I’ll check my private email. And I’ll try yours. I will talk to my daughter (Corie) when I’m there this week and see about them connecting. This might be nice support for each of them.

      We heard good things about Sister Kenny but of course couldn’t go there because they don’t take vent patients. We would have liked for her to stay at North Memorial because of its reputation for rehab, but of course, they don’t take vent patients either. Hopefully we’ll have more options once she is off the vent.

      With the vent, we had only two options: Regency and Bethesda. For reasons I won’t go into online, we opted for Bethesda. And they’ve been great so far.