need help

    • Anonymous
      December 20, 2007 at 5:40 pm

      hi everyone my name is josh i have not been officially diagnosed with gbs yet but i go back on monday and i think thats what they are gonna tell me. a couple docs have tossed it around but said nothing yet. i have gone for the ncv/emg and had mri’s and lots of bloodwork

      my symptoms actually include pain in my ankles and wrist and from what i read weakness is the big problem although i dont feel weakness in my legs just numbness and tingling however i have noticed the grip in my fingers and hands has just vanished. i have some grip i would say i have 25% of my grip a few people i talked with say yeah that sounds like gbs others say no what does every one here think?? i would appreciate any answers people have told me since its more pain than weakness that its not gbs

      thanks in advance,
      josh

    • Anonymous
      December 20, 2007 at 6:13 pm

      Hi Josh
      Keep up with your Doctors and the tests. They will find out what is wrong and what is the right course of treatment. God bless
      Karenlouise

    • December 20, 2007 at 6:24 pm

      Josh,
      How long have these symptoms been going on? My son presented much like you and was re dx to cidp. Either way, waste no time! IVIG is the initial protocol for either. Good luck to you and keep us posted! If you have any questions you can pm me.
      Dawn Kevies mom

    • Anonymous
      December 20, 2007 at 8:49 pm

      the first time i noticed anything was dec. 8th and i have been getting weaker and hurting more and more each day its weird because i def. dont feel sick i was sick about two weeks before this happened though heck i feel awesome aside from the pain if you understand what i mean o well monday should tell the tale

    • Anonymous
      December 20, 2007 at 8:51 pm

      Josh,

      There are so many illnesses that mimic GBS. Generally, if you you present with weakness and loss of reflexes, specially after some infection eg. upper respiratory tract infection or diarrhea, if GBS is suspected a spinal tap should be done and can be accompanied by ncv/emg tests. Spinal fluid will show high protien levels (however sometimes it can show a false negative) if it is GBS, then obviously the ncv/emg tests can confirm that.

      Very important to remember that, if at any time before you see your doctors again, you have difficulty with breathing, or the weakness suddenly worsens, you need to go to the ER immediately. If you do have GBS, it is extremely important to start IVIg as soon as possible – no holding out to see “what may happen”.

      Please keep us informed ๐Ÿ™‚

    • Anonymous
      December 20, 2007 at 9:32 pm

      sorry to keep asking questions but what is the ivig i mean i have seen three docs now and each one mentions gbs but i have not got a for sure dx yet

    • Anonymous
      December 20, 2007 at 10:19 pm

      Josh ivig is not a cure but it is given usually in 5 treatments and it stops the immune system from attacking the sheath on the nerves any more and causing more damage. Then the healing process can begin by reversing itsself in reverse. The first signs you had will be the last residuals to go away after rehab.

      The two approaches have often been found helpful. High dose intravenous immune globulins (IVIG), protective blood proteins obtained from healthy volunteers, can be readily given through an arm vein. (Which the Doctors thought did not work for me) So I also had another treatment, called plasma exchange (PE), or plasmapheresis, some of the patient’s blood is removed and the blood cells returned without the liquid plasma portion of the patient’s blood. It may work by removing harmful antibodies contained in the plasma.

      Have you been seen by a Neurologist? Are you experiencing Fatigue? REST is going to be your best friend once you are admitted to the hospital.

      Good Luck to you on getting a quick dx. Here you will hear that GBS also stands for [B]G[/B] etting [B]B[/B] etter [B]S[/B] lowly. The Foundation also has very good Free Information that you can call and have sent to you and/or your doctors.

    • December 20, 2007 at 10:53 pm

      Josh,
      Not always, but typically, gbs comes on more quickly than the time frame you describe. We were in the 3-4 week category w/ the gbs dx and then changed to cidp. Anyway, the sooner you start ivig the better what ever your dx.

      There is speculation to the exact function of ivig. Some research says that it stops the production of auto antibodies (bad) that your body now produces and allows the production of antibodies again (normal) It is also believed that it acts as a shield if you will, on top of your myelin (the protective coating on top of your nerves), kind of like the orange around an electric cord that protects the wires (nerves). While your myelin is no longer under attack because of the ivig, you get a chance to regrow the myelin, therefore reducing the inflamation, therefore allowing the nerves to get proper transmission once again. I think it is a combination of all of those things!

      Once you get a dx of at least gbs from the docs, you can start ivig and then worry if you have a variant later. It is of the utmost importance you start ivig as soon as possible. With Christmas approaching, it may be adviseable to get an answer before so that you can be admitted, insurance aproval, etc. As Ali mentioned, if breathing becomes the slightest bit stressed, go to the er. This is what wound us up in the hosp and in intensive care for 10 days. Do not wait if breathing becomes an issue. I do not mean to alarm you, but the situation can change drastically in hours, as it did with us.

      If you do wait till Monday, insist on a l/p or a ncv/emg before you leave. These will be sure fire diagnostic tools!!

      Best Wishes,
      Dawn Kevies mom

    • Anonymous
      December 21, 2007 at 8:41 am

      Josh,

      Just because your symptoms don’t read like they do in the medical journals, doesn’t mean you don’t have GBS. The doctors are scrambling to figure something out and you have to be careful here, because most doctors hate to say they don’t know something, so they will just guess at what you have instead of asking for another opinion. I had a doctor tell me I didn’t have GBS since my symtpms started in my head and neck, and not in my feet like the book said. I was happy to be the one to tell him he wasted all his parents money in medical school, because I have GBS. My symptoms started in my head and neck and worked its way down to my toes. GBS usually starts in your feet and works its way up to your head. I lost use of my hands also. Most people develop muscle loss or weakness, I had pain and lots of it. My muscles would cramp when ever I would move, breath, cough, laugh, you name the muscle and it would cramp. I could still move, although it was painful to move, but I could do it if I had to. I also had breathing and swallowing problems. I hate to be the one to tell you,:eek: but the usual way to determine if it is GBS is a spinal tap. Sorry big guy, its not fun, but if you have it done, lets hope you don’t get the first year resident that I got.[url]http://www.gbs-cidp.org/forums/images/smilies/eek.gif[/url]
      ๐Ÿ˜ฎ

      Good luck

      Sean

    • Anonymous
      December 22, 2007 at 6:23 pm

      gbs came on to me very quick. It started in my left foot and worked its way up. As someone else said they did a spinal tap on me as well as a number of other things to dx me but did so very quick. I lost my legs first then my hands and arms, eventually everything. I agree with the poster that said ivig asap. Hang in there and I hope that you do not have gbs or cdip. I tend to think cdip is worse from what I have read on the forum. I still have problems that I do not think will ever get better, but I can walk on my on with a cane most of the time but can do without it sometimes. My endurence is what is the bad thing about me and cannot do the things I use too.

      Joseph

    • Anonymous
      December 23, 2007 at 9:55 am

      Since my LP didn’t show elev. protein my neuro in hospital waffled on treatment. I could walk with assistance and breathe on my own so no tx was done. I see a new neuro on the 26th for emg / ncv. I guess my question is: is it ever too late for ivig? Here I sit thru the holidays wondering if I need ivig (needed ivig a week ago in the hospital?). Is damage being done by not having the ivig asap? As of yesterday I started have muscle cramps in the right leg…not fun! ๐Ÿ™ I’ve had no pain (just the opposite: numbness) until yesterday. Today pain in left foot. Normal? Weird?

      Thanks for any and all help….you guys are sooo helpful!

      Carla

    • December 23, 2007 at 8:22 pm

      Carla,
      The l/p does not always show up if it is too early, sometimes the same is true with the ncv/emg. More than likeley though, there would be evidence in the ncv/emg.

      Yes, more damage is done if you wait with no treatment! Is it possible to go to an er? The ivig does not stop the progression, it stops the production of additional autoantibodies and allows antibodies to produce. Once this starts, remylination occurs (over time and depending on your dx) I do not know how much you know and do not want to insult you with explanations if you are already aware, so if you have any questions, just ask on this thread or pm me. How long have you had the symptoms? Over what time frame have they progressed? Have they peaked yet?

      I just re read your post, ncv/emg the 26th are a great start. If in any way you can convince the doc to admit you on the 26th after ncv/emg and start ivig (if results warrant it) that would be ideal. As long as you feel worsenning, no it is not too late for ivig!!! If you feel worsenning, bad autoantibodies are still producing and more damage is being done, so yes ivig can still help. Some studies indicate that the sooner you get ivig, the better the prognosis for residual affects. Be sure to retrace the first signs of weakness, cramping etc. and make a time line. Time frames are important when dx variants. Good luck to you and be firm when you go the 26th. With New Years approaching, it would be awful to be put off till after the first, that would be another whole week!!! Be strong and if any difficulty with breathing occurs or walking unassisted becomes an issue, don’t wait till the 26th, go to the er!
      Dawn Kevies mom

      REMEMBER IF YOU GET IVIG TO INSIST ON A SLOW FLO RATE and the liquid form if it is gammaguard, not S/D the powder form of gammaguard. These two things should help with reactions in addition to fluid intake and premeds (the hospital will know about the pre meds.)

      Dawn

    • Anonymous
      December 24, 2007 at 10:49 am

      A spinal tap will not always properly assess GBS. I am diagnosed with axonal GBS, meaning the axon (nerve) was compromised instead of or along with the mylon sheath, and will not increase proteins that show up in the spinal tap in most GBS patinets. FYI..

    • Anonymous
      December 25, 2007 at 9:18 am

      While in the hosp. on 12-12 thru 15th, no one ever mentioned that the normal csf protein results might be a false negative or that it could be too soon to show an elevation. I didn’t know enough about it to [U]insist[/U] on treatment at the time. When I see the new MD tomorrow, I will be better informed ([B]thanks to you guys[/B]!) and will be more assertive about treatment. I’ve got a timeline down and will take with me to doc, hope that helps. Orig. neuro called me yesterday morning to check on me, said the emg and ncv would not have been useful tests at hosp., would have been too early but that tomorrow is good timing. Dawn, I can’t thank you enough for the advice on the rate of ivig! I want to be as knowledgeable as possible when I get to the treatment stage. Feel free to send me more as you think of it.

      Carla

    • Anonymous
      December 25, 2007 at 9:22 am

      Question for dave-not-taz….if I may ask, on what criteria were you diagnosed of axonal gbs?

      Carla

    • Anonymous
      December 25, 2007 at 10:03 am

      I didn’t have the ncv/emg test till weeks later, don’t in my situation wouldn’t matter as they knew by protein, loss of reflex, paralysis, etc…good luck and hang in there, deanop

    • Anonymous
      December 25, 2007 at 10:33 am

      Carla,
      I had just mildly elevated (59) protein in my spinal fluid and mildly abornomal ncv so my doc did not think it was GBS. Therefore, I did not get treatment during my time in the hospital (Aug ’06). They never gave me a firm diagnosis so my neuro referred me to Mayo where they decided (2 mos later) that it must be a mild case of GBS. I am interested in how this all turns out for you. Over labor day weekend, I started having muscle cramps/twitching and muscle weakness again and it has continued since that time. Have had new MRIs — no evidence of MS and now neuro is thinking about ordering new NCV/EMG. Am I having residuals because I did not get treatment? Or, is this maybe CIDP? I am grateful that I can function, but I feel like a slug some days and wonder what is going on with me. I am praying you get some answers. Please keep us informed!!!!

    • Anonymous
      December 26, 2007 at 8:26 pm

      I saw the new neurologist this a.m.. He did the emg / ncv test which was within normal range. He thinks I have one of two things…transverse mylelitis of the spinal cord or atypical gbs….atypical due to the fact that my reflexes are pretty good and the normal emg and ncv. Onset was classic gbs, nearly all signs and symptoms are typical gbs. The normal csf protein coupled with today’s findings confuse the md’s . Now i’m to have an mri of the spinal cord, especially looking at the cervical spine (base of skull) for inflammation. He ordered ot / pt (since i can’t button clothes, tie shoes, etc….i’m doing well to hold a pen in my fingers to write and i’m weak as a cat. He says with either dx it’s going to take time to recover. If i’m not better with ot / pt in 2 weeks he wants me to see a neuromuscular specialist. Any thoughts?

    • Anonymous
      December 26, 2007 at 9:13 pm

      Hi there,

      I have read through some of your posts and we have a lot in common, including both being home health nurses! I was also atypical and QUITE frustrated. It is now 9 months later and I finally asked for a second opinion and went to see a neuromuscular neurologist who specializes in GBS/CIDP. What a world of difference. I had elevated protein, quadraparesis, numbness, tingling, altered gait, etc. the whole thing, but my reflexes were intact. I did so much research and the people on this site were invaluable (and still are). Atypical in reading many posts here, makes for a challenging diagnosis. I would ask for IVIG if I were you. First, it won’t hurt anything if you don’t need it, and you have enough symptoms to see if it will help. And it doesn’t help immediately with GBS, but stops the damage. That will be my eternal regret because I am only now getting IVIG treatments with success, but for 9 months have had my myelin damaged for not getting treatment earlier. He kept saying it was mild, it would go away, it takes a long time, etc. In hindsight I would have demanded IVIG to see if it would help. But not knowing how slow is slow, and how quick should one recover, I didn’t ask more forcefully. Actually my neuro told me after the elevated protein in the LP that it was too late to get IVIG and it would fry my nervous system. Well that’s not true, but I didn’t know that at the time. Good luck and keep us posted. Gabrielle

    • Anonymous
      December 27, 2007 at 6:55 am

      carla,

      ditto gab. ask for ivig.

      gene

    • December 27, 2007 at 9:52 am

      Other possibilities to explore might be cmt, charcot marie tooth syndrome, or myastanis gravis. If a particular nerve was not tested, they would not know if it was myastanis gravis. I do not know enough about it to comment about it, but we were tested for it when we had the ncv/emg. Boy it is funny, I always say we, I guess it just feels like I have the cidp with Kevie! CMT was another dx we had. Since your results were close to normal though, I would suspect not. Apparently the ncv/emg results for gbs and cmt mimmick each other, that is why they thought we initialy had cmt.

      What is your time frame? How long have the symptoms been going on? Time of onset to peak is also a consideration in a gbs vs cidp dx. Is ms a consideration? Are they going to do an mri of the brain? Maybe you could ask for one at the same time as your spine mri. Do not be alarmed, there is another condition that gets discovered when some people have mri’s. I personally think more people than we know have had it, it just appears more NOW because more people get mri’s.
      i can’t think of the name, but it has to do (I think) with something being to long in the spinal chord where it connects to the brain. If you have time, read connors mom’s posts. She has it.

      Good luck to you with your testing and I hope you get answers soon. Remember, if they suspect gbs or cdip, BEG for ivig while you are trying to figure out if it is something else. If they are wrong and it is something else, its not like the ivig will hurt. Besides, they use ivig for so many other things now, it might even benefit any other dx they come up with. Something else I was thinking about, if they mention steroids, they have to be sure it is not gbs, as steroids are counterproductive to gbs. So maybe if they suggest steroids, hold off till they positively r/o gbs.
      good luck to you and prayers are sent your way!
      DAwn Kevies mom

    • Anonymous
      December 27, 2007 at 11:44 pm

      Got your posts and appreciate one and all. Gabrielle, we do have alot of similarities and you wrote down alot of the concerns going around in my head. The mri of the base of the skull and spinal cord has been sched. for Jan 2. Mri’s are to be read by a neuroradiologist. MD says if I’m not better by Jan 11 with getting ot / pt, he wants me to see a neuromuscular specialist. I don’t think I’ll wait that long…feeling that I may as well go on and scope one out. Guess I don’t understand why docs are so hesitant to order the ivig. The consensus seems to be “what’s the harm”? My thought is, even if it’s transervse myelitis of the spinal cord, wouldn’t ivig be a good tx? Dawn, tests already done for myasthenia gravis…all negative. I asked about ms but md’s prefer dx of gbs (although atypical) due to onset sx’s and present sx’s. Thanks for the vote on ivig treatment, Gene. You guys are so knowledgeable and supportive…can’t thank you enough! I think my family is getting pretty frustrated and I’m trying very hard to be positive for all of us.

      Carla

    • December 28, 2007 at 12:13 am

      Carla,
      I feel your angst! We are awaiting a call from the doc telling us what he thinks of my proposal of maint. ivig instead of cell cept. the waiting is killing me! I am hoping he calls by tommorrow as I will have to scramble to find another neuro if he declines, the next treatment is 1/7. This feeling of submission to the docs. is unbelievably taxing!

      I hope you get some answers soon!
      Dawn Kevies mom

    • Anonymous
      December 28, 2007 at 10:14 am

      Hi Carla, yes I went around with the MS thing too. When I had my first IVIG I didn’t really care which diagnosis they used, since that can be used for MS as well, I just wanted to improve! Like I said, hindsight is often better and had I known, I would have kept on searching for a doctor that would prescribe the IVIG. It can’t hurt and can possibly help sparing you months of waiting, etc. Good luck! Gabrielle

    • Anonymous
      December 29, 2007 at 12:15 am

      Hi Dawn, I was wondering if your son’s doc called about the maintenance ivig? You are so right about the doctor / patient / family relationship being taxing. I’ve about decided not to have the mri’s (just to rule out something he isn’t going to treat anyway?) but I’ll have to call and justify my decisions to him… wondering if I shouldn’t go on to the neuromuscular sub-specialist. Plus I still want to talk with one of these docs about the ivig…it’s all really draining at times. Anyway, I was hoping you got the call you wanted today about Kevin’s treatment…you are in my prayers.

      Carla

    • Anonymous
      December 30, 2007 at 3:25 pm

      Can you guys stand another question from a newbe? When is it appropriate to start ot and pt?
      I’m in week 3 and have had no treatment as of yet. Dr. ordered ot and pt to start now but after reading some of these posts, I see that pt should be done carefully with rest periods in between sessions. I have the waddling gait and intermittent pain in legs…muscle cramping / charley horse-type pain.

      Thanking you ahead of time for answers.

      Carla

    • Anonymous
      December 30, 2007 at 4:23 pm

      carla,

      pt or pt, at home or professionally, can be started whenever you can handle what you do in a manner that you recover in 12 to 18 hours from it.

      gene

    • December 30, 2007 at 5:54 pm

      Carla,
      Three weeks is not that long (from an atrophy point of view) Besides, you are still walking and moving around. Kevin was 6 weeks from the first symptoms to the first ivig. His muscle weakness after treatment was minimal, granted he was 10 years old. Also, if you do have cidp or gbs, and no treatment yet, that means continual demylienation is going on. This is just in my mind, as small as it is, but blow it past the doc. IF, your are in a current demylienation, more nerves are being affected, so how can pt or ot be effective? You may get frusterated or worse yet injure yourself. I agree pt and ot would be appropriate, but maybe after treatment. Kevin gained stregnth immediateley with treatment, and we only did 3 sessions of pt to take baseline measurements of where we were in the beginning (grip test, and other gauges they use) and to learn what we could do at home. You are dealing with even a shorter time frame, so your weakness is probaly even less.

      Dawn Kevies mom

    • Anonymous
      December 30, 2007 at 9:11 pm

      Thanks, Gene and Dawn! I have decided not to do the 4 mri’s the new neuro md ordered, saying he’s checking for transverse myelitis (which he doesn’t intend to treat if present). After researching transverse myelitis, it’s plain that my symptoms don’t fit. Neither does the description of MS. I had an mri of the brain when initially hospitalized (12-12) and it was normal. I received my info packet from the GBS headquarters yesterday…page 12, “Early findings of GBS” fits me to a T.

      The neuro told me on the 26th that he leans more toward a dx of atypical gbs (atypical because of normal emg / ncv and knee reflexes). One of my questions is this: doesn’t atypical gbs get treated in a traditional manner if sx’s are present? Plus, since I’m in week 3, how do we know that damage isn’t ongoing? And,in that case, isn’t ot and pt premature?

      I hope the md is as patient with me and my questions are you all are! ๐Ÿ™‚

    • December 31, 2007 at 8:54 am

      Hi Carla,

      Since the doc is leaning towards gbs, make sure he does not prescribe steroids. Would you say your symptoms have peaked, are you any worse? If they have peaked and you are not worse, it probably is gbs. If you can somehow convince the doc to give you a 5 day loading dose of ivig, it would be awesome. It might give you some added stregnth, positively insure the stopping of auto antibody production AND give you a sort of baseline to go from regarding the observance of a progression down the road. (In the event it could be cidp)

      Regarding your statement of too early for pt, I ALWAYS read from others on this site and KEvin always said that he was tired after pt. Maybe take it easy for now and just go in for some baseline measuring of your grip stregnth, and other diagnostic measurements. The pt can tell you what is in the normal range and give you some excersizes to stregthen these areas at your own pace at home. Kevin was given this large rubberband and some excersizes to work on his ankles and wrists. They were done in bed and very low key. they did work and did not weaken him or tire him as much as say the treadmill, bike or steps.

      We also found the baseline measurements helpful down the road (5 months) when his symptoms returned) At the completion of pt (about 1 month) they measured again. By that time his numbers were in the normal range. When the symptoms returned 5 months later, I asked the doc for another evaluation prescription for the pt and the numbers told the story, he was back to low numbers.

      You may be surprised, insurance could be an issue, they only allow for a small amount of pt per month and for the year, so if you do go, make sure to at least get the full evaluation and things you can work on at home. Have a nice day and I hope the NEW YEAR starts off smooth and positive for us all.

      Dawn Kevies mom

    • Anonymous
      December 31, 2007 at 1:25 pm

      Hi, all! Today I called the general neuro to decline the mri’s and was met with a resistant attitude. My point being I don’t fit trans. myelitis signs and symptoms, he wouldn’t treat me even if it was and it would cost my ins. deductible (about $1200) just to rule this dx out….when he said himself he really thinks I have atypical gbs. SO, I called the neuromuscular md that the orig. neuro recommended to me, confirmed that he takes my insurance and his ofc. faxed me a patient questionnaire (to see if it’s in our mutual benefit to be seen by him). I called the general neuro back to have my emg / ncv results sent to the neuromuscular doc (THAT was pleasant…not!). The neuromuscular md ofc. will call me Wed. to tell me if I need that type of doc or stay with gen. neurologist.

      The nurse at the gen. neuro is a lovely lady, post gbs herself, so I assumed (yeah, I know…never assume) she more than anyone would understand my point of view about ongoing diag. testing as well as seeking appropriate teatment. Not so. This is all so frustrating and taxing….I seem to spend all my energy on making sure I’m getting the right help.

      Dawn, you’re so helpful with the PT info. I am stronger than I was one week ago…in spurts. Gait is still off, sort of a waddle / shuffle. So, I’m guessing I’m entering the recovery phase. We’ll see what the next doc says! :rolleyes:
      God Bless you and Kevin’s treatment!
      Carla

    • Anonymous
      January 1, 2008 at 9:38 am

      HAPPY NEW YEAR CARLA.
      This time last year I had GBS and didn’t know it. my legs were tingley and my walking was slowley stopping.
      I have been reading your replys and it makes me so thankful for being guided to my Neuroligist. From the moment I was wheeled into her office she said she knew I had GBS. 4 hours later I was checking into a hospital and that night at 10 PM I was getting IVIG. and I got it for the next 5 days. 3 days after discharge I was seeing a PT 3 times a week. We both learned how to treat me as I was his 1st. He had read about it in school.In 4 weeks I was walking without support.
      All my Neuroligist did was a nerve test. I felt a change in my feet 2 hrs after they started the 1st IVIG. My feet got warm. (lol) Carla I as many others were blessed with a light case of GBS.Mine was from a flu shot.As you are finding we know more about what we have than most doctors. In July I had a triple bi pass and that went great. Now I pray 08 will be a beautiful year for everyone. I have you in my prayers and thoughts. and make some noise. Tell the doctors you WANT ANSWERS not more tests. ask them if they had a family member in your place would they still be guessing. You know what you have. and you want treatment. Spirtual love (Steve)

    • Anonymous
      January 1, 2008 at 8:11 pm

      This forum has helped me in so many ways. I’ve learned more from my fellow gbs’ers than from [B]any [/B]doctor I’ve seen so far! Not to mention the support and encouragement y’all have provided, I’ve really needed it. Since this disorder is not well known, few people (including healthcare workers) know how to perceive our symptoms. Even my loving family doesn’t get this…they think I’ll get up tomorrow morning and be well, full of energy and rearing to go.

      Steve, I appreciate you sharing your story and for your prayers. I hope your cardiac recuperation goes well. That’s some major surgery less than a year post-dx with gbs! You’ve been through the wringer in one year’s time! 2008 has to be better, right?! :p

      As crazy as it sounds, I [U]almost[/U] wish I’d had a severe case of gbs. Then the guessing would be over as to how or when (or the biggie)…IF, I need treatment! Seems with a mild case, it’s test for this & that, lots of shoulder-shrugging and “well, let’s wait and see if you get better in the next 3 weeks”. My PCP dx’d me over the phone on 12-12 when I described my symptoms. He’s an internist! 2 neuros later, I’m still not treated and don’t know if I need to be…docs can’t decide. If the neuromuscular doc says I don’t need tx, I’ll do OT and PT, rest and wait. That’s my game plan for ’08.

      God’s Blessings upon my new friends here. You are a wonderful group of brave people!

      Carla

    • Anonymous
      January 1, 2008 at 8:46 pm

      Carla, I know what you mean! I had a mild case (I think — my neuro is still guessing one year later), no treatment and I have LOTS of residuals. My PCP called it immediately — sent me on and I have been through all the tests. I did not completely lose my reflexes and my spinal fluid protein was only slightly elevated which really bothered them. It bothers me too because I think I may have missed the opportunity to get treatment that could have made a difference in my recovery.

    • Anonymous
      January 4, 2008 at 8:46 pm

      Hi, Iowagirl! Are you sick of the caucuses by now? ๐Ÿ˜€

      I didn’t hear from the neuromuscular md’s ofc today, I’ll call them Mon. a.m..

      I wonder if the residuals are worse when there’s no treatment? What do you veteran gbs’ers think?

      Thanks!

      Carla

    • Anonymous
      January 4, 2008 at 11:26 pm

      Politics made it interesting around here for awhile, but I, for one, am ready to see them all move on to New Hampshire!! ๐Ÿ˜€ The phone stopped ringing today!!!

      Carla — I recovered pretty well without treatment (other than some predisone from my PCP during the first few days) over the first year, but for some reason it all started again in September, although not nearly as intense as in 2006. The tingling, numb, cold feelings in my legs are not as intense but I have much more muscle twitching now.

    • Anonymous
      January 5, 2008 at 9:23 am

      carla,

      w/o ivig or pp you are worse off both in the short & long term of things. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 5, 2008 at 2:40 pm

      I am just beginning to see why GBS stands for Gets Better Slowly. I have the “one step forward, two steps back” situation. I have energy in very shorts spurts (I can heat up my dinner in the microwave) but if I try to load the dishwasher when I’m done, forget about it! I’m as weak as a cat. The overwhelming weakness is the most frustrating part, I think. My brain is fine but I’m a mess from the neck down! I say my brain is fine…BUT…I worked from home for about an hour (paperwork) Wed. afternoon and had to go lay down a couple hours afterward. I felt worn out. Craziness.

      If the neuromuscular md tells me on Monday that I don’t need treatment I’ll seek OT and PT. I’m in week 3.5 right now so I’m not going to over-do therapy of any kind. Frankly, I don’t think I could if I wanted to.

      Another question, please. Has anyone ordered the dvd from GBS International geared to inform family members what we facing with GBS and our recuperation? I’m looking for helpful tools to explain to my family what I’m dealing with and looking forward to long-term. If you have any suggestions, I’m listening!

      Carla

    • January 5, 2008 at 5:48 pm

      I am confused, well, not that thats a-typical HA HA. But seriously, more and more people w/gbs seem to be getting steroids as a course of treatment, I thought that was a no no .

      Is there new info you could pass around so I do not give anyone wrong info? Thanks!
      Dawn Kevies mom

    • Anonymous
      January 5, 2008 at 9:46 pm

      how do we know that the prednisone given iowagal was helpful? how do we know that the prednisone given iowagal was not detrimental? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 6, 2008 at 9:31 pm

      Hi all! Very good question about the steroids. If the neuromuscular md suggests prednisone for tx, I will question that….I was under the impression that steroids were contraindicated for GBS. If anyone has good info, please let us know.

    • Anonymous
      January 6, 2008 at 10:29 pm

      Dawn, why not steroids?

      Peggy

    • January 6, 2008 at 11:04 pm

      I have read many abstracts that say no steroids for gbs. However lateley, it appears some are getting steroids for treatment. Additionally, I read that early on when gbs was just being studied and treated, steroids were used. I have to surmise that it is a cost factor. Obviously steroids are pennies compared to ivig or pp.

      Prednisone also is known to cause weakness, one of the side affects, so why would one administer a drug that causes weakness to an already weakened person. Perhaps some docs figure that steroids typically reduce inflamation, and cidp/gbs is an inflamatory process. What do I know?

      It seems to me that if you are SURE you have gbs, you just have to wait to heal and take pain meds if needed. If you have cidp, ivig should be first, if you are unsure if it is gbs or cidp as we were, do ivig, it can not hurt and if there is no improvement but yet no worsenning after lets say a couple of loading doses, I would say it is gbs. I would try anything before the steroids. If you need them then you do, but be sure!
      Good luck,
      Dawn Kevies mom

    • January 6, 2008 at 11:15 pm

      I should be clearer, for those who have been dx w/gbs, YOU NEED TO START IVIG to stop the additional production of autoantibodies. The longer you go with nothing, the more autoantibody production, the more damage. Carla, 3.5 weeks is not that long, ivig would still be beneficial, just go in to the office Monday and demand it, tell them you have nothing to loose, but without ivig, you have lots to continue to loose. Ask for a concrete answer as to why they refuse you ivig. Regarding the “mild” statement, KEvin too was dx “mild” I would like to see some of these docs live one day in your mild life, or watch their son or daughter of 11 y/o not be able to walk. Put that out there and ask how they can deny you a couple of loading dose ivig’s to at least make an effort!

      Good luck!
      Dawn

    • Anonymous
      January 7, 2008 at 3:13 pm

      Dawn,

      With regards to sterroids. Studies were done ….. patients who recieved no treatement improved as opposed to those who recieved sterroids. In fact, it was shown that sterroids actually seemed to worsen the symptoms of GBS. No neurologist who “knows” GBS will suggest sterroids because of what those studies showed and because of the possible effect it may have on the patient. (I wish I could find my book where the studies were shown, will do if I find it.)

    • Anonymous
      January 7, 2008 at 3:48 pm

      as i have suggested before, i am fairly sure that the steroids that were given to my dad to help with the what they said was sepsis is what actually started his downward spiral and ultimate untimely death. the more i think about it, the more it makes me so mad that the doctor treating him did it with total disregard of his underlying diagnosis of GBS. we begged and begged to have a neurologist on his “team” but the doctors kept saying that the gbs is not what was causing all his problems- i called bunk and when they finally agreed to get a neuro, it was too late- he passed away. i know that it is fruitless to be angry at those who made the mistake – i just hope that this never happens again.

    • Anonymous
      January 7, 2008 at 11:00 pm

      First, let me say, Jammamma, how sorry I am to hear about your dad. As with anything else, there are good doctors and then there are boneheads. It’s beyond frustrating when you get in a situation such as your dad’s and no one will [U]listen[/U] to the family. I quickly found that the people on this forum know more about GBS and CIDP than any doctor I’ve spoken with.

      Dawn, [B]IF[/B] I can ever get the neuromuscular doc on the phone, I will tell him just what you have said about the ivig. You stated my point exactly…I may indeed have a mild case of gbs but I’d like to tell the docs to trade a day with me…shuffling their feet because they can’t pick them up, have numb legs, be overwhelming weak 99% of the time. They would break down the door to get treatment.

      How’s Kevin doing? Get everything he wanted for Christmas?

      I’ll keep you posted. Thanks for the info and encouragement!

      Carla

    • Anonymous
      January 7, 2008 at 11:17 pm

      I feel I should clarify my treatment with prednisone. This was given to me when my doctor thought I had some other autoimmune illness going on (not GBS). When I ended up in ER six days later barely able to walk, the prednisone was stopped. The weekend neuro (who did the NCV) said it was GB and ordered IVIG to start on Monday, The Monday neuro wanted more tests before treatment. They didn’t find anything else (slightly abnormal NCV and slightly elevated protein in my spinal fluid and IGG MGUS). Now I’m having all this muscle weakness and wondering if IVIG would have made a difference? Did the predinsone stop the progression or did it cause some kind of permanent weakness? I will never know. It is what it is.

    • Anonymous
      January 8, 2008 at 1:15 am

      jammamma,

      i am sorry abt your dad’s death prolly caused by incompetent docs. this happens more often than folks realize. let it serve as a lesson to us all to speak up & use this as an example so his death will not go in vain. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 8, 2008 at 9:58 pm

      Iowagal, the neurologist I got at initial hospitalization said the prednisone I was on for the upper respiratory infection probably kept my GBS to a “mild” case. As if to say the steroids stopped the progression. However, the steroids also probably masked the CSF protein result (normal). In any case, he said steroids were not helpful once dx’d with GBS. And I didn’t receive ivig either.

      Upon hearing good results of ivig and solumedrol, I will ask the neuromuscular md. His office finally called today to say he had reviewed my case and does want to see me. Maybe I’ll get the ivig treatment at last. First available appt. is the 17th.

      When I got up this morning my legs were as weak as they were a month ago at onset! Very frustrating but not unusual, I’m guessing. I’m beginning to think GBS has a mind of it’s own!

      Carla