Help please?

    • Anonymous
      November 1, 2011 at 11:47 am

      Im looking for a little bit of help/advice on what to do next. Last saturday my hands and feet began to go numb while I was working out I didn’t think it was a big deal then my mouth nose and eyes also went numb. My hands and feet have continually been numb since saturday and I have noticed my legs getting tired just walking around the house. I also had a very bad stomach infection of some kind a couple of weeks ago while traveling through El Salvador. My feet are also cold all the time, and my abs feel like they have gotten weaker. I am living in Nicaragua but I feel like if this is something serious I need to get back to Colorado for some kind of treatment. I guess my question is would there be enough time to get back there if a I got a flight for tomorow/Wednesday morning. I am a little bit scared to atempt a day of travel a if more serious onset of syptoms is approaching. Any Advice? Thanks you, Jerret

    • Anonymous
      November 1, 2011 at 12:54 pm


      Can you see a neurologist in Nicaragua? There was another member on here recently, Nick, who had similar symptoms after a bacterial infection. He is now treating with a neuro and getting additional diagnostics and IVIG. If you have the beginning of GBS, then you will need to get to an ER if your symptoms worsen. You need to see a physician so that they can do the appropriate bloodwork and tests and so you can get treated as soon as possible. I can’t really answer your question about traveling to CO for medical treatment. However, if you have onset of GBS, that would not be a good idea to be on a plane.


    • Anonymous
      November 1, 2011 at 1:09 pm

      [QUOTE=JerretNicaragua]Im looking for a little bit of help/advice on what to do next. Last saturday my hands and feet began to go numb while I was working out I didn’t think it was a big deal then my mouth nose and eyes also went numb. My hands and feet have continually been numb since saturday and I have noticed my legs getting tired just walking around the house. I also had a very bad stomach infection of some kind a couple of weeks ago while traveling through El Salvador. My feet are also cold all the time, and my abs feel like they have gotten weaker. I am living in Nicaragua but I feel like if this is something serious I need to get back to Colorado for some kind of treatment. I guess my question is would there be enough time to get back there if a I got a flight for tomorow/Wednesday morning. I am a little bit scared to atempt a day of travel a if more serious onset of syptoms is approaching. Any Advice? Thanks you, Jerret[/QUOTE]

      That sounds very much like my GBS onset back in 1995. I had an awful stomach virus/infection for over 2 weeks prior to the GBS onset…couldn’t eat, and lost a ton of weight. My feet were cold, my ribs hurt, and I felt very tired and achy. I went into the hospital for my stomach bug, but a few days later my legs gave out suddenly and I found out it was GBS.

      I would try to seek medical attention ASAP. I was “lucky” in that the total paralysis only went up to my waist, but some people’s lungs and breathing can be very bady affected. For this reason I’m not sure if I’d chance a plane flight.

      I’m not trying to scare you with the above info, but I’m hoping you will be cautious. One advantage you have is that you obviously know what GBS is, so you can ask to be tested for it…..I had never heard of it when I got sick, and unfortunately neither had any of the doctors at the hospital~!

      I don’t know what medical care in Nicaragua is like…..if you feel that you can find a good doctor there that is knowledgable and can help, I would try that before trying to get on an airplane. Plus, if you ARE having an onset of GBS, the fact that you’d be sitting down in a plane for hours without moving, in a pressurized cabin, may not be the best thing for you, and may even excacerbate the problem.

      Best of luck, and please keep us updated~!!


    • Anonymous
      November 1, 2011 at 9:03 pm

      Thank you very much for the responses, I am going to try and catch a flight out of Manauga tomorrow morning at 7 get to denver by 2pm. Dependent though on how Im feeling when I get up. Does GBS cause any problems with brain fuction? I had a really hard time trying to pack today and booking flights. That may have been due to the anxiety of not knowing what is happening? But my mind just seems like if moving at about half speed.

    • Anonymous
      November 1, 2011 at 9:21 pm

      Usually not any brain problems. The problem is usually your brain is going along and your feet and hands can’t keep up, then you get confused because you think you should have had all of that packed but again hands and legs are moving at half time, then anxiety sets in, etc… Stay as calm as you can on the flight, GOOD LUCK, have someone meet you at airport like already suggested and then go straight to a hospital……….

      Best of luck,

    • Anonymous
      November 1, 2011 at 9:22 pm

      Usually not any brain problems. The problem is usually your brain is going along and your feet and hands can’t keep up, then you get confused because you think you should have had all of that packed but again hands and legs are moving at half time, then anxiety sets in, etc… Stay as calm as you can on the flight, GOOD LUCK, have someone meet you at airport like already suggested and then go straight to a hospital……….

      Best of luck, Angela

Help Please!

    • Anonymous
      November 16, 2008 at 11:37 pm

      I get tingling sensations everyday and have for over a year now everyday-I have them in my gums, tounge, lips, feet, face,-however they are not permanate. They come and go everyday. My right foot though is always tingly-just not as bad some days. I used to get tingling sensations every now and then when I was younger, just not like this. I also get the tingling in my thorat-again not all time, not even every day. I also started noticing last year that some days my thorat feels tired-not all the time just sometimes. This never used to happen, I used to talk and talk(lol) when I was younger and even just a few years ago and never would get tired. I still don’t shut up, it is just some days I notice my thorat feels tired and also some days when I go to swallow my food I feel like i cant and chew a few more bits and then do(i do not have any sort of fear of choking)swallow. This started bothering me a few months ago. I have had ocassional consitapation for maybe 3 years now-take some laxatives and am fine for a month or longer and did not really think of it that much. Now in the last 2 months I have needed these every week just so i can go…really difficult for me to push. I also have always been hot my whole life and started to sweat a lot since teens, anyways just this summer and now fall I notice that i seem to sweat a lot in my head and neck more in the summer than fall.

      I went to a new neuro-did not mention the sweat thing or consitpation. Just about everything else. He said he did not think I was getting worse and that the tingling in my face and thorat were anxiety(since i always worry about everything)the feet he said are cidp. Since I never used to get tinglying in my feet when i was younger-i question this. However once he told me this my heart is not racing all the time when i get the tingling and my mind is not going all the time.

      I have no idea anymore. I have been of off steriods since May 2002 and IVIG since Nov 1997.

      I am going to make an appt tomorrow with a different neuro and see what he says.

      I used to only use a scooter out in public for my weakness and fatigue. However within the last two years i have been riding it around the house,because my feet have gotten more crooked and it is to difficult to walk on hard surfaces by myself, so when I am in the kitchen i use my scooter all the time and park it in the family room when i am in there and walk around. So I can still walk.

      I also have been thinking that i really wanna give ivig a try again-It was a huge noticeable difference back when i was four,i was running and doing everything my parents say..I feel like my nerves are not dead cause i have never been paralyzed and so possibly maybe this would help me again and this i could be more aggressive with the treatment since they have better brands nowadays and maybe i would not get the aspetic meningitis reaction i used to get 2 days post infussion.

      I would appriciate any of your opinions:)

    • November 16, 2008 at 11:43 pm

      Jessica Louise,
      Please go back to the doc the constipation is autonomic, Kevin had that. Ask for a spinal if he needs proof. It sounds like a relapse, with active demylienation. Will write more tommorrow, Kevie has to get to sleep, rough night.
      Dawn Kevies mom

    • Anonymous
      November 17, 2008 at 12:14 am

      Thanks for replying… I will check back here later.
      Hope Kevie is feeling better!

    • Anonymous
      November 17, 2008 at 12:57 am

      I agree with Dawn that you need more action from the doctor. I can’t remember where in michigan you are but I was really impressed with that Dr. Lewis at the Symposium, I don’t know how you felt. It think you probably are anxious, but who wouldn’t be, and I hate it when doctors just brush it off as anxiety. They need to treat the whole person!

      I’ll keep thinking happy thoughts for you, but you need to trust you gut and fight for what you need!

      Take Care,


    • Anonymous
      November 17, 2008 at 3:36 am

      Hi, Jessica.

      The tingling in the face, etc., can well be a part of CIDP — I tingle everywhere, including my tongue, ear canals, and lips, and what isn’t tingling is numb. Early on it tended to come and go, but now it’s constant.

      I also have trouble swallowing and have to chew food very thoroughly and have a drink close at hand when I eat. I’ve come to the point of rarely eating anything that isn’t soft to begin with — lots of casseroles, avoiding chunks of meat like steak.

      Regarding sweating, a lot may depend on your age — I’m at the stage of hot flashes.

      Regarding the constipation, definitely talk to your doctor. It may be CIDP or anxiety, but it could be something else. It’s certainly not something to shrug off; have it checked (you may need to see your GP about it, since sometimes neuros only want to deal with neurological problems).

      Best wishes in the battle,


    • November 17, 2008 at 9:43 am

      Hi Jessica,
      I hope you are doing better this morning. Dr. Lewis is the one you asked the question of. He was the one that was talking about cmt to you and at the end came over and spoke with you. As Marjie did, I too liked him. A friend of mine has just returned from mayo w/her daughter, some of the same issues, constipation as well as urinary. Tests were done and they determined it is more likeley than not the cidp causing it. Will the doc give you ivig, or if I remember, you were frustrated with ivig in the past, would you consider prednisone or something else? I also was thinking about some of the other people that were at the symposium and had cidp as children. It seemed like for the most part, they seemed to go into a remmission for some time after or around puberty, for some years, some were even 10 years, one four. Anyway, they relapsed later and got back on ivig. If I remember, you stopped treatment a while ago and I was wondering if you progressed after or remained pretty stable till now. Regarding the relapse or so we assume, it would seem like now after a few years you are flaring up again, this seems to be a typical pattern for those who had childhood cidp. Good luck and be aggressive. My best wishes to you and your mom trying to figure this out.
      Dawn Kevies mom

    • Anonymous
      November 17, 2008 at 12:46 pm

      Before Emily was dx’d she had tingling in her face, on her head (it hurt for me to wash it – I thought she was just didn’t like her hair washed) & she had trouble swallowing. To this day (at 7) she will only take very small bites when eating.

      What neuro did you just see? I’m curious since I live in MI as well. It sounds to me like he didn’t know much about CIDP to completely dismiss ANY symptom you are having without running any tests.

      I think you need to find another neuro. The people who went to the symposium seemed to be impressed with Dr. Lewis but if you can’t see him then I would suggest getting into U of M.

      Any new neuro should want to do another round of complete testing – MRI’s, spinal tap, EMG, etc.

      Good luck.

    • Anonymous
      November 17, 2008 at 3:25 pm

      sometimes the constipation can be from other meds that you take…

      I hope you’re doing well.


    • Anonymous
      November 17, 2008 at 9:43 pm

      Thanks everyone for the helpful info and good thoughts..

      Had a really bad morning earlier, was getting all tingly my whole body, then i felt like i was going to pee my pants, then i felt like i was going to pass out, my heart was either to slow or to fast-can’t really explain it, i got like this again in sept and was on the toliet and screamed for my mom and she got there in time then i passed out. Anyways this morning when I felt like this i felt like i had to sit up then i screamed for my mom-she came to see me and she calmed me down, it scared me. I never did pass out which was good.

      I talked w/my mom and she said when i was younger like before I was four my mom would always end up going into work late because i would take a really long time to go. then until prob. four years ago i had the exact opposite problem when i would eat sour cream, ice cream, anything with a creamy sauce, and pop. Now I am back to being consitpated all the time and the only thing that works is a few laxatives, which takes about two days to kick in and i only take them 2 once a week for a few months now.

      Since I started getting like this about 4 years ago every now and then i would take laxatives and be fine for a while. Anyways four years ago i was on no medication for anything, so I do not think I can blame it on that. Now I am on a bunch of meds. Also within the last few months i notice and so does everyone around me as the day progresses like when i did a short film in the summer i only worked 5 or 6 hours but by the time it was over i was so tired and by the time i got home i was sluring my words and i sounded like i was drunk…This happens all the time lately…My shrink put me on adderall to give me energy to combat the drowsiness from the paxil i am on and also did not like that i was drinking 2 energy drinks somedays 3 just to get through the day and said adderall was safer. Adderall has helped me but then it wears off by the evening and i feel run over-however i was like this or i started noticing this the beginning of summer and did not start adderall til mid july. I am now starting to put all these things together which is why i am afraid i may be worsening..I remember summer of 07 my sister was showing how she can make her tounge look like a couch, and then i did my tounge like a lizard, something i had been doing for years, anyways i noticed that when i did this my thorat got really tired which i thought was weird but blew it off. I also remember four years ago on the way home from florida driving i was siting in the back seat w/my sister and i got this werid sensation in my leg which i had never had before and i yelled at my sister because she was drinking pop and i asumed she had splashed some on me, only now within the last year in a half or two when i first started getting these sensations more regualary i realized that my sis never did dump pop on me.

      I went to a neuro at the same place i used to go to before my doc retired. The doc was nice but all he did was have me squeze his hand and not let him push my arms down and then did the same with my legs and feet. He said that if i was in a relapse i would not have been able to push him. He seemed to think i was fine which made me happy for like a few days. It just does not make any sense to me since i get these sensations all the time now just different parts more often than others, but these do happen every day but not 24hrs a day at least i dont think so. Also my mom seemed to think i could be getting worse because i was and am dropping things more often and some days i do feel weaker. I kind just made myself feel like maybe i am crazy since doc did not seem that concerned, said the tingling in my feet was cidp but the tingling in my thorot eyes face was probably because of anxiety. I was the last person he had to see so i let all my concerns go. I just feel like my feet never used to be like this but i never said anything.

      I did feel like Dr. Lewis seemed to know what he was talking about at the sympossium and did not seem like an sob. Had my mom call today to make an appt. and there was 10mins left before five and the lady on the phone was rude and told my mom they were closed. So she is going to call tommorrow morning-i am hoping i can get in soon and not have to wait, cause i really am worried i could be getting worse and if i am i want to be able to stop it with ivig and waiting months could be bad…

      Sorry this is so long..

    • November 17, 2008 at 11:15 pm

      Tell your mom to tell the lady you spoke with Dr. Lewis at the symposium and he would be happy to see you. Tell her you need to talk to him asap as your are declining and your throat is tingly. Tell her if she does not get you in you will have to page him after hours. If it comes to that leave the message w/ service that you are the girl he spoke with at the symposium. I know he will not let you down if you can just get through the secretary. Don’t give up or get discouraged by her behavior, she could have been having a bad day too. We never know what others are going through. Once you get to him I know things will be ok. Stay strong, you and your mom.
      DAwn Kevies mom

    • Anonymous
      November 18, 2008 at 8:06 am

      Energy drinks can affect the heart rate. It is best you stay off of them. Hope you get in to see Dr. soon.
      take care

    • Anonymous
      November 18, 2008 at 3:16 pm


      Sorry to hear that you are not doing so good, when I was in the hospital, the first couple of days I was constipated too and the doc. said it was related to the GBS.

      You should never think that you are crazy, going trough that is very rough, we all have our good and bad days, I suggest you tell your doc. to do a spinal, just to make sure you know?

      One of the treatments that worked really good for me, was electric shocks troughout my body to wake up my nerves.

      Hope you are having a better day.

    • Anonymous
      November 19, 2008 at 9:41 am

      Jessica –

      I took Emily to the same dr’s office that you used to visit. I found that the dr’s were not as up to date on CIDP or their treatments as I would have liked.

      I really hope you can get in to see Dr. Lewis ASAP. If you feel you are getting worse & you can’t see him any time soon then I would suggest going into U of M ER. I say U of M because they do have a good neurology department.

      Good luck.


    • Anonymous
      November 19, 2008 at 7:06 pm

      I had my mom call yesterday and I am seeing Dr. Lewis Dec.1. I am hoping he will let me start ivigg again, since i do not think even after all these years of no treatment that my nerves are dead, just badly damanged.

      Thanks everyone for all the support:)

    • November 19, 2008 at 8:13 pm

      Great news!
      Dawn Kevies mom

    • Anonymous
      November 20, 2008 at 1:10 am

      Glad to hear it! I’m so happy for you!


    • Anonymous
      November 20, 2008 at 10:21 am

      Glad to see you got the appt. That is pretty fast too. I sent you a private message, did you get it?

    • Anonymous
      November 20, 2008 at 12:03 pm

      Oh yeah I know…My mom called and they originally said that I could not get in till the end of Jan. and then my mom told them about meeting him at the symposium and they said they had a cancelation Dec 1 so I could go then. So hopefully the appt will go well.

      Jan-Yes I did get your message. Thanks:) I will send you a message.

Help Please!!!!!

    • Anonymous
      July 21, 2008 at 12:30 am

      I haven’t been on for about a couple of months because I thought I had a referral to Dr. Parry BUT it turns out he now only see’s MS patients! Nobody called to tell me this and now I am supposed to choose another neuro without any help from the one who referred me or the one who referred me to that one! I will not go to Mayo because both my son and I had really bad care there a couple of years back so I need to find a good one between Mandan ND and Minneapolis MN. I was given 3 names that may be possible which are Dr.’s Walk, Shahkhan, and Muley all at U of M. Any info would be great!
      Oh and the neuro that I had back in Nov who threw a tantrum and walked out on me, I found out just last Thurs. July 17th he was convicted of felony terrorizing by jury, 3 weeks after he walkedout of my room he attacked his live in girlfriends 13 yr old son with a knife to his throat and he a;so was going back into court for another charge of simple assault from an incident in april also! He fought with a child in dec and again in apr. He tried to sa I was crazy??????!!!!!!!! HE IS NUTS!!!!!!!!!!
      Anyway sorry this is so long but I just don’t know what to do because I am slowly getting worse. My husband has been wonderful about everything and he is even remodeling our kitchen so I can cook again (although maybe it’s because he cannot stand his own anymore,lol) The one good thing is I finally got my disability and it is coming regularily thank goodness for that!
      Take care and thanks for any and all advice!

    • Anonymous
      July 21, 2008 at 2:08 am

      I don’t have any dr recommendations for you. I’m not familiar with any of the names you were given. You should call the GBS-CIDP Foundation to see if they can help. Have your primary physician call the neuro’s office & ask that they get you in quickly. Most times when your dr calls they will fit you in. You could also ask Dr. Parry’s staff to call the new neuro & explain the situation…if they will.

      That’s crazy about that last dr. I remember you saying he walked out on you. What a nut case! Now I’m happy that he walked out. Could you imagine the care you could’ve received from him?!?! It just goes to show having an MD doesn’t make a dr any better than the average Joe.


    • July 21, 2008 at 10:43 am

      Hi Jodylynn,
      Sorry things are so messed up. Has Dr. Parry abandonned gbs/cidp? Have you tried begging his office and explaining your predicament and deterioration? Maybe if you write him a letter and fax it to him he would make an acception, or try calling the foundation and see if you could get them to pull some strings. What about lying and saying maybe you have ms? Has it been r/o? Hope you get some help soon, i am praying for you. BTW, if worse comes to worse, you may have to go to MAyo. I am sure the docs are different, and maybe you could bet in contact w/ the hospital administrator and have a heart to heart explaining your urgent health situation and your past experience with the institution. If he knows of your past and present plight, maybe he could make sure things run smooth. Just a thought, maybe I am holding too much faith in the human race.
      Dawn Kevies mom

    • Anonymous
      July 21, 2008 at 11:20 am

      Hi Jody-Don’t let one crazy MD spoil it for the rest-in hindsight maybe it was a good thing he walked out on you-it might have been you he harmed in some way! One question, when you went to Mayo before, was it to see a neurologist? I too, when first dx with cidp —-had to go back to U of Michigan for a second opinion, and I had previously had a horrible experience with them and my husband. This time I saw a neurologist for me and I had an excellent experience. Mayo sounds closer to you, but let your gp make the referral, he can get you in faster. Sorry about Dr Parry, but it would be unfair to him to make an exception to treat you for MS when you know you have cidp; he would have to refer you on anyway. Do it honestly. Between the foundation and your gp, you’ll get the help you need. Good luck to you. Emma

    • Anonymous
      July 22, 2008 at 2:55 am

      thanks everyone, Dr Parry’s office gave the numbers to the neuro I have here and her nurse told me they would send on my records from Parry because he already has them which unfortunately include the pshycho doc that walked out on me and I cannot seem to get his summary removed from my records!My reg doc will call whoever I like but he does not know which to recommend. I was surprised to find out 2 months after the referral that Parry no longer see’s CIDP patients. When I called his offiice all I got was we’re sorry but that is the way it is.
      I actually am closer to U of M than Mayo and the time I had the issue with them was when I had the first go around with gbs in 2001 and saw a couple of neuro’s along with others and was there for 6 weeks and they did not help me. With my son it was after that and we were there a week and i told them the problem but they had to go through all these tests before seeing a ped surgeon, who when he came in the room i told him if he wasnt there to sched. surgery to leave and call dr. leonard at U of M, he did and leonard called me at the hotel that night at 10pm and we were in to see him between surgeries the next day and the day after he didd the surgery my son needed in the first place, exactly what i told mayo.The next thing leonard did was call the doc’s at mayo and chewed then out royally. Once is bad but twice never again.
      I told my husband that i am only giving the next neuro one chance and if he doesn’t help me get the ivig or pp then i am done i will figure it out myself or literally die trying. He wont argue because he is tired of the docs passing the buck too! Sorry I am rambling but it is late and i cannot sleep even though i am exhausted and the 10mg of xanax are not helping me sleep at all. my primary is great about working with the pain aspect and we are getting a little closer o maybe a 4 on pain but probably have to up the neurotin again since i am only on 1800 mg a day with 100mcg fentynal and lorecet 10/650 every 4 hours, i was a zombie at first but now i am getting around a little more alert except nights like this. maybe i will give the foundation a call tomorrow to see wht they have to say. I need t find out soon so i can sched as soon as they sched my sons surgery next month so we only have to nake one trip to minneapolis to U of M. Thank you all and I will keep you all in my prayers as usual. Thanks!

    • Anonymous
      July 22, 2008 at 3:01 am

      oh yeah i forgot the crazy doc was convicted of the simple assault from april now too! My biggest problem is his summary he says i am the one that is crazy which he wrote not until about the same time as he assulted the 13yr old with the knife which was 3 weeks after he walked out on me, go figure! and my lost records of diagnosis don’t help either! Thanks again everyone!

    • Anonymous
      July 22, 2008 at 3:20 am

      Hi Jody-having a hard time getting to sleep myself. Thought I’d say hi-those three neuro’s at U of M-are you able to call each and ask if they are experienced with gbs.cidp pts. and go with whomever has the most experience? Truly hope you get the help you need. Or maybe Dr. Parry’s office, you said, is supplying some numbers to your neuro there_are those for the U of M neuro’s? Good luck Jody.

    • Anonymous
      July 22, 2008 at 6:38 am

      hi Emma yeah they are the ones Parry’s office gave because when I callled Parry’s office to question why he couldn’t see me I asked and they all are there at U of M. The list was alot longer so I asked about specialties in Neuropathy and those were the 3 then I asked about CIDP or even GBS and I got oh I am not sure but probably. I guess I will throw a dart and see which name i hit kinda like pin the tail on the donkey lol fitting name in a wy for my former crazy neuro! Thanks Emma!

    • Anonymous
      July 22, 2008 at 10:24 am


      I would either check with Dr. Parry’s office, or see if the GBS-CIDP Foundation would help in recommending a neuro that has experience in GBS-CIDP….

      Hang in there.

    • Anonymous
      July 22, 2008 at 2:17 pm

      Jody, Brett is right, the foundation should know. Al least get in to see one and ask if that is his specialty, and if not, he can refer you on-frustrating, I know, but you will get to the right one and then go from there to get your much needed help.

      And, as far as what that convicted criminal neuro put in your chart-forget about it-his record will show the truth about what he said and did and it was NOT you……


Help, please

    • Anonymous
      January 16, 2008 at 12:42 pm

      Hi, this is my first post and I hope someone can help. My mom was diagnosed in April 07 with GBS. She was in the hospital and rehab for 1 month and did recieve IVIG. She was never on a vent. She did really well and was walking with cane and sometimes without it until Nov 07. She began falling and had less control of her extremeties. We went back to the neurologist and he said she was having a relapse and recommended 5 days of IVIG. Which she did and got very sick and was in the hospital after the 2nd dose with severe headache and vomiting. She just doesn’t seem to be bouncing back. They didn’t repeat her EMG or spinal tap. And her spinal tap in the beginning was normal. Of course now she is real discouraged and we are trying to keep her spirits up. She has been a nurse for 30 years. My sister and I have been talking about taking her for a second opinion. Any suggestions or advice would be greatly appreciated. Thanks

    • Anonymous
      January 16, 2008 at 12:53 pm

      Yoy do not say where you are from. That may make a difference on how far you want to travel. I am going to do the same thing for my husband. Although I want him to go to The best which I feel is John Hopkins in Maryland , he wants to go to Alabama as our neurologist studied under a doc there. Ask your present neur. about plasma exchange

    • Anonymous
      January 16, 2008 at 1:06 pm

      We are from Indiana. Its really hard to find any information regarding which drs, if any, actually specialize in GBS. The Dr wanted her to try loading dose 5 day IVIG followed by monthly doses for 3 months and imuran 2 x a day and then re-evaluate after the 3 months. I just don’t think that it is making any difference. I know they say it is a long process but it is just frustrating watching her. She is 52 and an ER nurse so it is real hard for her to be patience.

    • Anonymous
      January 16, 2008 at 2:10 pm

      I know how frustrated you must be. I have tried not showing my emotions but it is hard. Again I would ask him for a referral. That does not mean you will not go back to him but if you hear it from another doc it may confirm. First I would call the Foundation and ask who in Indiana or another state they would suggest.

      I do not have that number right off hand but go to google to find gbs/cidp foundation. They can tell you which hospital to go to close by
      Unfortunately they did not know anyone in Knoxville where we live. I am finding people who go to John Hopkins, Vanderbelt, May clinic, or Cleveland clinic.
      Probably the best sources.

      I feel your pain but do not give up

    • Anonymous
      January 16, 2008 at 3:10 pm

      Welcome to your new family where we feel what you feel. Try to get in touch with one of our members called JETHRO. He is from southern Indiana and would be an excellent person to turn to for help. He does not come to the forum too often, so probably won’t see your post. Just click on where it says “Members List”, that’s in the blue/grayish bar just above where it says “post reply”; and go to the J’s for Jethro.

      If he is allowing it, an email is probably better then a PM. We are ALL family here, so if he doesn’t respond, follow up with a 2nd or 3rd email or PM. Some people just don’t read their emails often.

    • Anonymous
      January 16, 2008 at 3:26 pm

      Hello again,
      This might also help if you live near enough, try Dr. Theodore Nukes at Heartland Neurology Assoc. in Indianapolis or Carmel. I don’t know how much he knows about GBS, but he is experienced in neuropathy’s.

      Usually a teaching hospital is the best place to find well informed doctors.

    • Anonymous
      January 16, 2008 at 5:02 pm

      Thanks a lot for all the advice. I think we have finally convinced her to go for a second opinion. She is real scared about more testing esp the spinal tap. I think if we all hear that GBS is what it is and what we are doing is right that it would be a lot easier to deal with. It is hard being a nurse not being able to give her something that will fix her right away. Thanks again.

    • January 16, 2008 at 5:22 pm

      Try checking a post by With hope recently, a member named Gene gave a name of a doc to her. Also, my eleven year old had the same reaction the first time we had ivig. It is all in the flo rate and pre meds. He finally was only able to max out at a 39 flo rate with pre meds around the clock all 5 days. We currently get ivig once a month, loading doses. There are blood tests you can take to check IGg and Iga levels to see which brands of ivig you are more compatable with . We personally are using Gammaguard liquid. We first used GammaguardS/D and that was the aseptic meningitis reaction. Apparently Gammaguard liquid gives the least amount of reactions.

      If you suspect gbs, I am not sure that imuron would be beneficial, if it is gbs, her symptoms could be due to her overdoing it. Rest is the only thing that helps. Many on this site will respond that know more about gbs. That was our first dx and cidp followed. If cidp is suspected and that is why they are pushing the imuron, maybe you could try the ivig again before the imuron. It is a tough decision and just when you think you have it, another curve ball comes your way! Good luck to you and your family and be your mother’s rock, she will need your stregnth and support, physicallyAND emotionally!
      Dawn Kevies mom

    • Anonymous
      January 16, 2008 at 6:41 pm

      I saw the best GBS doctor in Indiana (In my opinion) when I had GBS. Her name is Nancy Frappier. I saw her in Kokomo, but I think she also has an office in Indianapolis. Check her out. I am two years, 8 months from my onset and doing wonderfully. I consider her the best!

      Tonya Correll

    • Anonymous
      January 16, 2008 at 10:06 pm

      hi hdgrimes & welcome,

      i agree w those before me in that a particular brand of ivig might have sickened her and i am not sure she got the imuron w it or not, a another possible prob. also was she premeditated w 2 tylenol & 2 benedryl? what was the infusion rate? too fast & one might get sick. now to her Dx. you mentioned a clean lp [spinal tap looking for a protein count over 55], but not a ncv. of the 2 the ncv is more conclusive. it will tell when compared w an older one if she under a real attack or must rest more lying down. also a ‘relapse’ meaning recurring gbs is not treated w imuron. imuron is for cidp [chronic gbs] which i don’t think has been proven here. below is what i have for indiana. notice i already have incorporated tonya’s recommendation. take care. be well.

      IN Indianapolis Methodist Hospital 1701 N Senate Ave Indianapolis, IN 46202 (317) 962-2000
      I have visited GBS patients there in the past. I know they have experienced GBS/CIDP neuro’s.

      I saw the best GBS doctor in Indiana (In my opinion) when I had GBS. Her name is Nancy Frappier. I saw her in Kokomo, but I think she also has an office in Indianapolis.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 16, 2008 at 11:24 pm

      Hello and Welcome. I am glad to see you are being such an advocate for your mom. We love our caregivers on this forum. It really has not been that long since the onset of your mom’s GBS and it takes time for the sheath of the nerves to heal and get the correct signals back into the muscles. I am sure you have read GBS stands for Getting Better Slowly. The muscles need to be worked with OT and PT and just a month in the hospital is not enough. She should have been receiving PT at home. If balance is a problem they should be working on getting her muscles stronger and maybe working in the swimming pool would help her with balance while the muscles are still weaker. It does not take as much energy to work out in the water as it does to work out with gravity. It is also kinder to the joints. And you do not have as much of a fear of falling like you do out of the water. How is she doing with fatigue? Is she back to her regular routine and was she trying to do more than her body could handle? REST is very important. Remind her to listen to her body. Over doing it can make you slide backwards. Take care and keep things possitive…..her attitude is a big part of her recovery!

    • Anonymous
      January 17, 2008 at 2:58 am

      Hello and welcome.

      I think that the neurologist that I see is excellent and he has a very good “bedside” manner and cares about his patients. He is Dr. John Kincaid at IU Hospital in Indianapolis. He has won awards repeatedly as one of America’s Top Docs in Neurology.

      I think he is a tiny bit conservative compared to what people on the forum advocate about treatment, but it may just be me. He is very approachable and thoughtful.

      If you come down to Indiana University Hospital for a second opinion with your mom, send a regular reply or send me a PM when and maybe I can come say hi, if you would like, since I work at the medical center there. It would be nice to meet another adult with Guillain Barre syndrome. I was diagnosed 10 months ago and am still having fights with my body about it, but try to remain positive.

      Best of luck to you both in this journey.
      With Hope for cure of these diseases.

Help please!

    • Anonymous
      May 11, 2007 at 1:10 am

      Hello all!
      I’m Catrina; 17 years old from Mauritius. I’m new here and was reading the posts over here before registering and thought that maybe you people can help me out. Actually my father consumes a lot of alcohol and since the past few months he is losing his weight at a very considerable rate. I mean he was fat but now he is so thin that many people even fail to recognise him. I could have posted his photographs to show you how he’s changed but i don’t know how to add photos. Do you think that he is suffering from a serious desease. I don’t want to lose him too.

    • Anonymous
      May 11, 2007 at 1:23 am

      Hello Catrina!
      Welcome! Don’t worry nothing will happen to your dad but why don’t you stop him from drinking so much. I mean it seems that he drinks a lot. It’s true that it is difficult to quit but he canjoin a rehabilitation centre where he will get medical help to quit drinking. As for his weight, i guess he needs to consult a doctor as soon as possible.
      As for posting images, this is very simple. You just need to upload the image on an image hosting site where you will get the url of the image that you should copy and paste in the textbox thatyou get upon clicking the image icon. that’s all. Simple, isn’t it? If you still have difficulties doing it then feel free to ask for help.

    • Anonymous
      May 11, 2007 at 6:13 am

      Welcome, Catrina, it sounds as though dad is seriously ill, unfortunately alcholics are at more risk of liver and pancreas cancer. No one else can stop him drinking, only himself. Also alcoholics do their best to stay away from doctors, so avoid the alcohol issue and try to persuade him to see a doctor because of the weight loss DocDavid

    • Anonymous
      May 11, 2007 at 9:53 am

      Hello Catrina,
      Your father probably doesn’t have what the people here have, but I think some of us will try to help you as much as we can. It is not your fault that your father drinks alot, DON’T EVER BLAME YOURSELF. Drinking alot is a sickness, just like the sickness that I have.

      Your father must see a doctor and he probably won’t want to go, but that is what he has to do. Try to talk to him about seeing a doctor. If you know in your heart that he loves you, then ask him to go to a doctor because you love him and need him. Can someone else help you to talk to him? Do you have other family members? Do you go to a church that will help you to convince him to go to a doctor?

      After he see’s a doctor, then the second step will be for him to start helping himself.

      From My Heart,

    • Anonymous
      May 11, 2007 at 11:24 am

      Hello Catrina.

      Welcome to the forums.

      One thing you have not mentioned, does your dad have Guillain-Barre Syndrome?

      As for your father’s drinking, as the others have said, he does need to see a doctor, but you cannot force someone to see a doctor or to stop drinking.
      He has to want to do this for himself. Alcoholism is a disease and does need to be treated but only he can do this for himself.

      I am sorry you are having to go through this, it is always so hard for people to see their loved ones going through any illness.

    • Anonymous
      May 11, 2007 at 12:32 pm

      Ask him to call an AA hotline because his body is rejecting everything. I have been sober 2 years this past saturday and have seen people with Alcohol problems lose 80/100 lbs in a year or less and survive if they quit. BUT HE WILL HAVE TO BE THE ONE TO QUIT! It is a self diagnosed disease but very treatable. Usually a dollar a session or less. He is in need of help really soon!
      May God be with you.

    • Anonymous
      May 14, 2007 at 8:39 pm


      I’m so sorry to hear that you are only 17 and have such an adult size problem to worry about. My heart goes out to you.

      Your father might be losing weight because alcoholics often lose their appetites due to drinking. They usually also don’t eat nutritious meals, and their bodies sometimes can’t properly absorb the vitamins and minerals due to the effects of alcohol on the body.

      DocDavid had a good suggestion. See if you can get your father to go to a doctor about his weight loss, without confronting him about his drinking right now.

      You are not responsible for starting, or for stopping your father’s drinking. It’s a very difficult problem to overcome, but a problem that only he can deal with. Don’t make it your life’s mission to try to make him do it. You can offer help, but it’s not a battle you can fight for your father.

      And Catrina, please don’t feel like your father doesn’t care about you, if he doesn’t stop drinking. He just may not be strong enough to stop. I’ve know many smart, strong, loving, and special people, who have tried hard to stop drinking, and were unable to do so. I hope he will be able to do it, for your sake and for his. You will both be in my prayers.


    • Anonymous
      May 15, 2007 at 8:23 am

      Good morning Catrina.
      I am a recovering alcholic (22yrs). I have many that wanted to help and the more they tried the worse I got. They made excuses for me and I kept drinking. I was drinking to kill the pain in my mind. Also it is heritary. mine came from my mom. It can skip several generations then strick again. What had to be done for me was called TOUGH LOVE. No one would buy alchol for me and would not be around me when I was drinking. One day I lost it and fell apart and wanted to go into treatment. He has to want it and I will tell you like it was told to me. Either I got help or I was going to go insane or die. You can get in touch with AA and maybe someone talking to him will open his eyes. He has to do it. You can only be there if he wants help/ Pray for him and above all keep the church out of it. They do not know how to deal with a drunk. Maybe after recover they can.Get books on Dr Bob and Bill W the 2 that started AA. You need to get yourself into ALANON. this is for loveones of alacholics. I have you in my prayers and will do all I can to help you.