Majorly Frustrated

    • Anonymous
      August 23, 2006 at 9:11 pm

      Hi!
      We are kind of frustrated!!! My husband was diagnosed with CIDP in Feb 02, we fought for almost 4 years to get a doctor to listen to him that his hands and feet were tingling, then going numb, but was getting shooting pains thru them. We heard the same stories, carpal tunnel, he worked in Maintenence in a factory and so the Drs. told him the numbness and pain was from being on cement all day. He also, is a volunteer fireman and EMT for our small town. When he had to go for his physical for the Dept. The departments Dr. was examining him and he gave him a clean bill of health…my husband then told him, but Doc, I didn’t feel you just then touching my feet. The doc said you are kidding me right? And he said NO! He then had him stand on his tip toes, which of course he couldn’t do, then had him jump, which of course he couldn’t do, then he told him you need to see a Neurologist and if you think I am trying to scare you then I am. So finally after having to go thru his family Doc first and 2 months later, we get in to see the neurologist. He was put in the Hospital after much fighting with Ins. Co. and in March 2002 had a spinal tap and first IViG treatment, 50 grams-2 days. He was also put on prednisone for a short time. In April of 2002 had his first EMG test. I don’t know how often they do these test, but our Neuro, tells us he’s going to do another one, and then puts it off, He has stopped his IViG because he says its hard on the kidneys, but we see a big difference when he is off of them. We don’t have it as bad as some, but we read these articles of people that are really improving. And he just doesn’t seem to be, his muscle are starting to atrophy. He has nothing left of his calves, his arms are starting too! And the Dr. tells him to exercise…but when he gets home from work after 9hrs, he is exhausted and the last thing he feels like doing is exercising. Any suggestions??? I am trying to convince him to find another Neuro, but he thinks that they will say the same thing…and we can’t really afford any more hospital bills!!! Thanks for your help!!!!!

    • Anonymous
      August 23, 2006 at 9:34 pm

      Dawn,

      You are in a terrible situation. There are so many of us who have the same problem with regards to doctors. If you could let us know what area you live in, maybe one of our forum members will have some knowledge of a good doc he can see, even if it is some way to drive. So, to answer your question, yes I really do believe he needs to see another doc, but I do understand where he is coming from because it is actually exhausting and soul destroying going to a new doctor, having to try and explain, and seeing the same attitude as the last one.

      Does your hubby have problems with his kidneys at the moment, or maybe in the past, is that why he doesnt want to continue with the IVIG. If not, I really cant understand why he wants to stop IVIG, as it did seem to help him a great deal. You know, I find it so amusing (ok, maybe not THAT amusing :rolleyes: ) when doctors say …. just excercise, excercise and it will help – oh and believe me I do know it helps. But …. do they have any idea what real fatigue is, I really dont believe they do.

    • Anonymous
      August 23, 2006 at 11:12 pm

      Hello,
      As Ali said, if you would tell us where you live, we’ll try to find a forum member who will help you. DO NOT BE AFRAID TO FIND ANOTHER DOCTOR, try to convince your husband to do so, tell him his new family said to do so. I have CIDP, neurologist #6, was the one who understood, the other’s before him, told me nothing could be done. I AM RECOVERING NOW, very slowly improving and gaining strength and I believe it is because I was on IVIG’s for three years. The IVIG’s, when they work, can control CIDP from progressing and when CIDP is controlled, we can heal and from there get better. Many of us do need to be on a maintenence of IVIG’s, it could be for a few years, and maybe for some a lifetime (this I don’t know), SO IF YOUR HUSBAND DID BETTER WHEN HE HAD THE IVIG’S, HE NEEDS THEM.

      NEVER NEVER NEVER NEVER
      GIVE UP
      WE DO HAVE HOPE.

    • Anonymous
      August 24, 2006 at 1:15 pm

      If you live in MN I have an awsome Neuro I can refer you to. I think he is absolutely the best and diagnosed my GBS very quickly and is very very very thorough. If in MN then PM me and I will give you his info.

    • Anonymous
      August 24, 2006 at 3:08 pm

      doby,

      either on this thread or privately to me, would you pls send me name & contact info on your good nuro. i keep i list for future gbsers. thx. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 24, 2006 at 6:31 pm

      Dawn,

      I agree with previous posts. Your husband needs a new neuro. Getting are referral for a good doc in your area would be a great first step. The cost is certainly an issue, but your husband’s health is an even more important one.

      I’m so sorry to hear that your insurance company is acting as an impediment to getting the help your husband the help he needs. It’s time to be insist.
      Don’t take no for an answer. Just keep pushing for the tests and treatment that is required to help you husband.

      Time is also an issue. The longer the attack is allowed to go unchecked, the more damage is done to the nervous system.

      Best wishes for a good outcome. Please keep in touch with us at this forum to let us know if we can be of help.

      GENE,

      Thank you for taking the initiative to keep a list of good docs. This is something that should ideally be done by GBSFI, but I also understand why legal and other relationship issues prevent this from being done.

      Suzanne

    • Anonymous
      August 24, 2006 at 6:44 pm

      First of all to answer the question of where we live, we live in Illinois about 37 miles from Rockford or 90 miles from Chicago. This is the second time the Dr. has taken my husband off of IViG, and no he hasn’t had any kidney problems or other problems like that, the Doc just told him that IVig is very hard on the kidneys so they give the patients a break from it and then 3 or 4 months later will start it back up again. I told my husband what was suggested by you all and he was very surprised so hopefully he is thinking about going to a different Neuro now!! I am so thankful for a site like this to go to where people know exactly what you are talking about. Thanks again and our prayers are with you all.

    • Anonymous
      August 24, 2006 at 10:37 pm

      dawn,

      on the contrary the below is a quik search for ivig being hard on the kidneys. take care. be well.

      [url]http://www.google.com/search?hs=HI7&hl=en&lr=&client=firefox-a&rls=org.mozilla%3Aen-US%3Aofficial_s&q=ivig+kidney&btnG=Search[/url]

      Overall, the results suggest that pretreatment with IVIG can increase high-risk patients’ kidney transplant success rate from 5% to 35%

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 24, 2006 at 10:42 pm

      dawn,

      forgot to say in last post that cdc has sent letters to usa docs telling them not to Rx ivig for neurological probs – politics!

      IL Barry Arnason, MD Univ of Chicago Chicago, Il 773-702-6386

      treated at Alexian Brothers in Elk Grove Village during his recent stay in the CCU with GBS. His neurologist is Dr. Andrew Gordon with Northwest Neurology. They have offices in Hoffman Estates, Barrington and Arlington Heights. The number is 847-882-6604 Ben’s other neurologist is Dr. Kuhlman. He and Dr. Gordon are partners, and he’s the most wonderful doctor I’ve ever met. He can be reached at the same number as Dr. Gordon.

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 25, 2006 at 11:23 am

      Dawn —

      If you’re looking for new doctors, look to Milwaukee. I used to live in Rockford but now live in Milwaukee, and if you have to have GBS, this is the place to have it.

      The neuro care at Froedert Hospital is outstanding. It’s an excellent facility in its own right, but it is also the main teaching hospital for the adjacent Medical College of Wisconsin, which itself has an outstanding neuro program. For the most part the neuros on staff at the hospital are also professors at the medical school. The know GBS. They’ve reaearched it. They recognize it when they see it and they treat it aggressively from the outset. And your treatment isn’t simply from a doctor. It’s from a whole team. Great herds of white coated specialists descend on you throughout the day. Neurologists, neuro-opthalmologists, neuro-oncologists, neuro-immunologists, etc. And because its a teaching hospital, these guys are followed around by an army of neuro residents.

      The complex is on the west side of Milwaukee, near the Milwaukee Zoo if you’re familiar with the area. It’s about an hour and a half from where you’ve said you are.

      Mike

    • Anonymous
      August 25, 2006 at 11:39 am

      [FONT=Georgia][SIZE=3][COLOR=darkorchid]Hey, Dawn…[/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=#9932cc]Just did a MapQuest from Ashton to Dubuque. It is approx. 134 miles. 😮 Drat; thought it was closer.[/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=#9932cc]However…my neuro. is excellent, too, and has dealt with many GBS & CIDP cases. I have the utmost respect for him, as he is kind, patient-oriented & brilliant in his profession. If you like, I will p.m. you his name, address & phone number, just p.m. me & let me know.[/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=#9932cc]Thoughts & prayers coming your way…[/COLOR][/SIZE][/FONT]

    • Anonymous
      August 25, 2006 at 11:45 am

      [FONT=Georgia][SIZE=3][COLOR=darkorchid]GENE!!! 😮 😮 [/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=darkorchid][/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=darkorchid]Not sure if you have the name, address & phone # of my neuro. Somehow, over the years, I think I may have given it to you. Just in case, tho, I will be p.m.-ing it to you again. Have fun at the Symposium!!![/COLOR][/SIZE][/FONT]

    • Anonymous
      August 25, 2006 at 11:48 am

      If you are going to drive that far, might as well just go to the Mayo Clinic 😀 I spent a good part of my hospitalization there and was told that they have about a half dozen patients with GBS a month so they are very familiar with whats going on and the best in the country too.

    • Anonymous
      August 25, 2006 at 12:02 pm

      [quote=doby48]If you are going to drive that far, might as well just go to the Mayo Clinic 😀 I spent a good part of my hospitalization there and was told that they have about a half dozen patients with GBS a month so they are very familiar with whats going on and the best in the country too.[/quote]

      [COLOR=darkorchid]Yeah, yeah, yeah, Doby…lol!!! That’s another 4-hr. drive from Dubuque, IA. My neuro is excellent, too. [/COLOR]

      [COLOR=darkorchid]It’s THE BATTLE OF THE NEUROS!!! (Not to be confused with THE BATTLE OF THE BANDS!!!)[/COLOR]
      [COLOR=#9932cc]
      [COLOR=#9932cc]Crap. There are no smilies in the Quick Replys. :-)[/COLOR]
      [/COLOR]

    • Anonymous
      August 25, 2006 at 12:09 pm

      [QUOTE=Debi]
      [COLOR=darkorchid]Yeah, yeah, yeah, Doby…lol!!! That’s another 4-hr. drive from Dubuque, IA. My neuro is excellent, too. [/COLOR]
      [COLOR=#9932cc][/COLOR]
      [COLOR=darkorchid]It’s THE BATTLE OF THE NEUROS!!! (Not to be confused with THE BATTLE OF THE BANDS!!!)[/COLOR]
      [COLOR=#9932cc]Crap. There are no smilies in the Quick Replys.[/COLOR][/QUOTE]

      😀 Actually no battle of the Neuros here… my Neuro isnt even in Rochester (where the Mayo Clinic is) mine is about 3 hours north of there where I live. Mayo is just teams of doctors that rotate every couple of weeks so I ended up with 3 different teams while I was there… all very good.

      But if you want the best Neuro then then that would be my current one by my house… 😀

    • Anonymous
      August 25, 2006 at 1:05 pm

      [quote=doby48]But if you want the best Neuro then then that would be my current one by my house… :D[/quote]

      [FONT=Georgia][SIZE=3][COLOR=darkorchid]OK…will come by your house & sit…:D;):D [/COLOR][/SIZE][/FONT]

    • Anonymous
      August 25, 2006 at 7:58 pm

      Gene,

      What is this news about the CDC telling docs not to prescribe IviG for patients with neurological problems? Does that mean GBS/CIPD patients too?

      Suzanne

    • Anonymous
      August 25, 2006 at 8:52 pm

      suzanne,

      all neurological probs, so that would include gbs & cidp. they cite it is not a proven treatment [political speak]. the docs do not have to follow what cdc says, so don’t know how effective it will be. gbsfi says they will fight for you if you need ivig & are being denied it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 25, 2006 at 9:40 pm

      Dawn,

      Please keep us posted on your hubby’s recovery! I have a feeling everything will be uphill from here. Please let me know if you end up in Chicago!

      Best wishes,

      Shannon

    • Anonymous
      August 26, 2006 at 2:20 am

      Gene,

      Do you have a source for the CDC letter? I would love to see the letter, so that I know exactly what it says when I tell my neurologist to bloody well ignore it.

      I realize that the FDA has only approved IVIg for a very limited number of diseases/conditions. For whatever reason, those diseases warranted the full-up clinical trials necessary to gain approval. For GBS/CIDP, there probably isn’t enough incentive to do the full clinical trials. So, in all likelihood, IVIg won’t be approved for neurological uses anytime soon.

      Still, there is enough evidence that it is useful, if not necessarily safe and effective per FDA definitions, that the CDC should not try to prevent its use for these conditions.

      MarkEns

    • Anonymous
      August 26, 2006 at 8:37 am

      mark,

      Do you have a source for the CDC letter? – no in the sense that i have no copy of it. found out abt it at a gbsfi meeting. to a large degree trials have been run but the under current seems to be that the info is too old – go figure. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 26, 2006 at 8:51 am

      At the regional meeting I attended in Cleveland, they were saying that IVIG use was being declined primarily due to cost. You might want to contact your insurance company and have them preapprove its usage. They can then fax an authorized letter to your doctor if they approve.

      If you go to the main GBSFI page, on the right hand side there’s a link you can click on to let the GBSFI know about your issues with IVIG. This is from that page:

      You CAN Make a Difference
      In the Foundation’s continuing effort to make your voices heard in Washington DC, in statehouses across the United States and within the international community, we need your help.

      If you have been denied the IVIG treatment your physician prescribed, if your insurance company won’t reimburse a good part of your expenses for IVIG treatments or if you have had other problems obtaining the treatment you need, we want to hear your story.

      Hope this helps!

      Shannon

    • Anonymous
      August 26, 2006 at 8:05 pm

      Gene,

      That is rather alarming. Although I don’t expect to get GBS again (at least I hope not!), I know it’s always possible.

      I worry more about the CIPD patients and other new GBS patients. I wonder how much pull GBSFI has with this.

      Take care and best wishes.

      Suzanne

    • Anonymous
      August 26, 2006 at 10:31 pm

      Hey Guys!
      Our Infusion nurse told us that the pharmacy guy at the hospital told her there is a shortage on IVig and that at the hospital we go to, there are 3 patients needing it and they are only getting enough for 2 patients. Thanks for all the info and just to let you know my husband is seriously considering changing Dr.’s. So thanks for the support, we will keep in touch.

    • Anonymous
      August 28, 2006 at 6:51 pm

      shannon,

      you might want to ask the folks @ the cleveland meeting, if ivig is too costly, what the alternative is? pp is just as costly & is the only other known procedure for gbs. take care. be well.

      gene gbs 8-99
      in numbers there is strength