Newly diagnosed.

    • Anonymous
      May 12, 2010 at 12:23 pm

      After reading many posts on this forum, I feel so lucky that we caught my GBS early and I only had a mild case of it.

      My toes started tingling when I woke up on a Friday morning, and they never got better, so I went to an urgent care doctor on Saturday who told me I had plantar fascitis (which has no symptoms of tingling/numb toes). By Monday the roof of my mouth and tongue were also numb, as well as my buttocks and parts along my back. My doctor was worried that my tongue and mouth were numb so he sent me to a neurologist who asked if I had been sick recently-I had had a stomach virus 2 weeks ago, and he told me I had GBS and needed to go to the ER.

      The doctors at the ER we’re skeptical, not because I seemed like I didn’t have it, but because they had just admitted someone with it an hour earlier.

      My spinal tap was normal, as well as my MRI, and I got 5 doses of IVIG and was sent home. Since that Friday I woke up with tingling toes, now my hands, right forearm, mouth, back, buttocks, back of my legs, and feet are tingly/numb. I never lost the ability to walk, but I do walk slowly and from being so sedentary my muscles feel INCREDIBLY strange when I move around. I was a gymnast/cheerleader so I was pretty strong, and now I get winded just going up the stairs.

      I’ve always had a bit of acid reflux, but since I’ve been diagnosed, I’ve had TERRIBLE acid reflux/heartburn, has anyone else experienced this?

      Also, as far as fatigue, how long has it taken others with mild cases to become more energized? I feel the need to take a nap by lunchtime, I feel like a child. I want to go back to work, but work at a preschool so I know that is impossible at this point. I’m wondering how long it’ll take before I can go back 🙁

      I’m glad I found this forum, you all seem incredibly nice and supportive, and it puts things into perspective how badly I could have been effected by this. I’m sorry a lot of you have had it so much worse, it’s bad enough with a mild case, I can’t imagine it being any more severe.

    • Anonymous
      May 12, 2010 at 1:26 pm

      I to had what was considered a mild case of GBs dx in January after 4 weeks of getting number and number. Had 5 days of IVIG in the hospital and left the hospital with a walker. Switched to a cane after 4 weeks and started driving again for short distances. At six weeks I went back to work for 2 hr per day and at 10 weeks went to 5 hours per day. Still come home everyday tired and sleep for 3 hours or so in the afternoon. After my nap I can do chores for about 1.5 hours with little breaks now and then. At work I do mostly desk work but maybe 2 of the five hours on my feet. I still use a cane when I am out of the house. That’s my story and I’m sticking to it.
      Good luck to you, we are all different and I certainly hope your recovery is quick and complete
      Remember baby step are great bounds

    • Anonymous
      May 12, 2010 at 2:00 pm

      I am surprised that you received IVIG with a normal MRI and spinal tap. Was your emg/ncv abnormal? I had a “mild” case of GBS, supposedly, but could not get IVIG to save my life. You can read my story under the Vaccine forum (H1N1 vaccine). I had severe gastro problems (lost 25 lbs in 2 months), severe nausea. I am not surprised that you have bad heartburn/acid reflux.

      I am 6 months post. My nausea is better, but not completely gone. As for fatigue, it does get better. I was so fatigued in the beginning that I could only get up for an hour or so at a time and then had to lie down again. I wanted to lie down in the doctor’s office. Fatigue and energy do improve, but it is a struggle and I try to take naps whenever I can. I work a sedentary job, and work at home one day a week. I sleep on the train to and from work, and take naps on the weekend. There are drugs to help with the fatigue if you need them.

      As for muscle pains,aches, feeling weird, I think it is different for everybody. I still have muscle pains, aches etc. but I try to stay active which doesn’t help. I certainly cannot work out, by any means, but I do walk a lot and play with my kids in the backyard. In the beginning, I could not even hang the xmas ornaments on my tree. I had to hang a few, lie down, hang a few more. I went to the mall and my legs were heavy and tingling and I could hardly make it an hour. Now I can probably go 2 hours ok, but my husband always says that I look peaked when I get home. So things do get better slowly. You need a LOT of patience and make sure you keep following up with a neuro.

    • Anonymous
      May 12, 2010 at 3:16 pm

      Thanks, Harryb, for sharing. I have a feeling I won’t be doing much even part-time work next week. Depending on how I feel, maybe I’ll try to go in every other afternoon for a few hours, and ask to work with the older kids that I don’t have to lift to change.

      [QUOTE=jessicah]I am surprised that you received IVIG with a normal MRI and spinal tap. Was your emg/ncv abnormal?

      You need a LOT of patience and make sure you keep following up with a neuro.[/QUOTE]

      My NCV was concerning so the neuro did an EMG and said it definitely looked like GBS, and from the point I saw him to the follow-up appointment I had yesterday I have lost all reflexes in my ankles and knees. He didn’t say anything about my arm reflexes so I’m not sure how those are. I was actually concerned that I didn’t have GBS when the doctor said my spinal tap was normal, but he said we probably caught it early enough that it wouldn’t have shown up.

      The patience is the part that gets me. I HAVE to stay busy, i’m just one of those people-I was working full time, attending graduate school full time and taking two online undergraduate classes, all which had just finished when I got sick, luckily. I’m not a fan of sitting around, I’m always on the go and this is incredibly hard to adjust to 🙁 I miss my job, I miss running after my kids all day.

    • Anonymous
      May 13, 2010 at 11:30 am

      I understand you perfectly about how you have to stay busy. I am the same way. I work full-time, and have 2 kids 2 and 4. Luckily my job is sedentary, but I hit the ground running when I get home and don’t stop until about 9 or 10 p.m. I always push myself when I am sick (tried not to miss school when I had pneumonia) and this was no exception. I tried to rest when I could, but I would get so depressed about how I needed to lay in bed and I like to be active.

      It will get better. Just try to have a positive attitude that things will improve, and just appreciate this time you have to slow down. I am a type A personality and this definitely made me take stock of what the really important things in life are and prioritize what really needs to get done, which is a good thing to come out of this. I really appreciate my family a lot more, and they helped me to get through this. Hang in there and lean on your support system and don’t be too hard on yourself!

    • Anonymous
      May 13, 2010 at 12:59 pm

      Kakestah, welcome and hello. I’m so sorry you had to go through
      what you did but rest assured, you are in the right place. Keep reading and do research about what you have. I too like Jessica have to stay busy. When I lay down, I sleep-otherwise I talk myself
      into a self pity mode or get angry because I feel the way I do. When I’m busy I keep my mind off things. But that’s me. I try my best to stay as positive as I can. Nice to meet you.

Newly Diagnosed

    • Anonymous
      February 20, 2007 at 10:18 pm

      This is my first posting to the board. I was diagnosed tenatively Friday with CIDP based on symptoms I have been experiencing since October 06 and the results of my EMG. My symptoms appear to be fairly mild..tingling and weakness in my arms and cramps in my hands and legs. I also have been experiencing fatigue. My Dr. is ordering a spinal tap and then wants to treat with high dose steroids. Does this sound appropriate? How long is thy typical course of steroids? What questions should I be asking? I guess I just don’t know where to start.

      I am very confused because I also have several other symptoms that started at the same time and don’t appear to be related to CIDP. These include chest pain, light headedness, shakiness, and hair loss, and swollen lymph nodes. Does anyone have experience with these symptoms? I have had extensive testing and blood work and they only thing they have found is the CIDP, but I can’t help but think the CIDP and other symptoms are related since they began at the same time. I would appreciate any input. Thanks!!

    • Anonymous
      February 20, 2007 at 11:18 pm

      You might want to talk to the doctor about IVIg. Check out some of the other postings on this site about CIDP treatment.

      As far as the other symptoms go. I also have some chest pain and light headed, but that due to an irregular heart beat, . not CIDP

      Jim C

    • Anonymous
      February 21, 2007 at 2:42 am

      welcome to the Forums, you are in the right place to find answers to nearly all your questions related to CIDP, you’ve got a question? just post it, there are so many ppl here willingly to help. There are so many interesting threads open in the past ,I am sure you’ll find yourself in some of them. I know how frustrating is not to realy know what is going on with your body, don’t despair, there is a light at the end of the tunnel, you just need to focus on it .
      Welcome again and good luck in the battle!!!

    • Anonymous
      February 21, 2007 at 6:18 am

      Mom23, I am concerned about your lymph node swelling. There is a condition called B cell lymphoma which is occasionally complicated by a CIDP type of neuropathy. You may need a lymph node biopsy. DocDavid

    • Anonymous
      February 21, 2007 at 4:55 pm

      Welcome! I, too, experienced hair loss and when it began coming back in was shock white! The tingling, cramps, weakness, and fatigue also were part of my early symptoms. I was fortunate enough to get a crackerjack neuro who recognized CIDP and immediately admitted me to the hospital for a 5 day IVIG treatment in October, 2006. Since then, I have had another 5 day outpatient session approximately 60 days later, and because I respond so well to IVIG, had another 3 day IVIG session after 31 days. We have now set up a 2 day IVIG session in early March which will be 34 days. We are experimenting to see how long I can go between IVIG sessions and how few I can have before getting really symptomatic. IVIG is definitely the optimum treatment. Steroids did nothing for me, and the side effects were awful. Perhaps you can speak with your neuro about the IVIG – most people on this forum agree this is really the most effective treatment. Keep us posted. Good luck and good health.

    • Anonymous
      February 22, 2007 at 11:24 am

      The spinal tap is what confirmed my diagnosis of CIDP in July of 2005. I take IVIG every 60 days. Don’t know what I would do without it. My neuro added steroids to the IVIG for 18 months. I started at 20 mgs. every other day and worked my way up to 60 mgs. every other. I stayed at that rate for a year and then very slowly tapered off. There are a lot of side effects related to steroids and I think I had most of them but not all! We are now about to try Cellcept. It has much fewer side effects but costs a lot more. I’m sorry you’ve been diagnosed but you can still have a good life.:D Every day counts! Keep us informed on your diagnosis.

    • Anonymous
      February 27, 2007 at 8:28 pm

      For about six to nine months before i was diagnosed i experienced severe dizzyness and lightheadedness <--is that even a word;) anyway, i don't know if they were part of the symptoms of the emerging CIDP because i never sought medical advice about them...but just wanted to let you know that it did happen. Ohh yeah, and shakiness is Definitly a CIDP thang.

    • Anonymous
      February 27, 2007 at 9:06 pm

      [QUOTE=mom23boys] then wants to treat with high dose steroids. Does this sound appropriate? How long is thy typical course of steroids? What questions should I be asking? [/QUOTE]

      Hi, make sure you discuss the possible side effects of steroids with your doctor and perhaps do your own research.

      There is a number of us taking steroids. I for one tried high dose Prednisone a year ago and had to quit because I was losing control over my legs and needed to get a walker because of it. I also got terrible shooting pains all the way to my neck. Different people react differently and mine probably was not typical.

      I am on IVIG which does help some.

    • Anonymous
      February 28, 2007 at 4:47 am

      Please tell me more about the IVIG. I need to help my mom who has been diag. 3 weeks ago. She is deteriorating daily. Neoro has given her the only option of IVIG now but we know to little to make an decision . She is 69 and we are worried about trombosis, at her age.

      Please we need information and to speak to people that is in the same boat as we are.

    • Anonymous
      February 28, 2007 at 11:25 am

      I know I keep posting this article, well, ever since it came out, but I feel Tania should read this


      [B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences
      Between GBS, CIDP and Related Disorders[/SIZE][/FONT][/B]
      [SIZE=2][I]__________________________________________________ ______________________

      David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]

      [FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.

      [/SIZE][/FONT][FONT=arial][SIZE=2]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.

      [/SIZE][/FONT][FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).

      [/SIZE][/FONT][FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.

      [/SIZE][/FONT][FONT=arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).

      [/SIZE][/FONT][FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).

      [/SIZE][/FONT][FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT][SIZE=2]
      Article from the Summer 2006 GBS Newsletter[/B][/SIZE]

    • February 28, 2007 at 11:26 am

      Hi mom w/2 boys! I am still so new at this forum stuff. It says you posted yesterday but there is another date that says 2/20. So this info might be late in getting to you.Anyway I have been investigating the correlation of AIDP/CIDP causing Hashimotto, therefore maybe explaining why some peoples blood work for the tsh test comes back normal. Your symptoms fit the criteria as do my sons? Maybe this can help you

    • Anonymous
      February 28, 2007 at 6:54 pm

      Tania – I am no expert on IVIG, lots of folks on this forum are more informed that I am, but I can tell you my experiences. It has worked very well for me, and I would follow your mom’s neuro’s recommendation for IVIG treatment, especially if she is symptomatic (weakness, numbness, tingling, etc.). The idea is to get relief and then assess how it worked and if other options would be as good. As far as thrombosis (is this what you mean?), ask her neuro about this. Let us know what happens. Tell your mom we are all sending good wishes and thoughts to her. Good luck and good health.

newly diagnosed

    • Anonymous
      May 22, 2006 at 9:54 pm

      Hi everyone, I am really glad to a have found this site and forum. I was diagnosed with GBS on 4/21/06. I am 29 years old. It is difficult to talk to people that have not experienced it or know some who has. I was in the hospital for 2 weeks. ICU for 3 days. The plasma exchange worked wonders for me and I didn’t ever have complete paralysis. Only legs and arms. My symtoms came on very fast. Everyday I got worse till they doctors finally figured out what I had. I am now out of the hospital doing outpatient physical therapy. I use a walker currently. I have found myself getting depressed about this and I don’t have anyone that really understands. My family is very suportive but they don’t really understand. This forum has been a great help. I don’t feel alone now. I do have a question. The right side of my face is paralized. It started getting better but then got a little worse and now it just stays this way. Has anyone had this particular symtom and how long did it take for the face muscles to come back. I hate smiling because it looks so weird. Thanks for reading my post and for this forum.

    • Anonymous
      May 22, 2006 at 10:06 pm

      Welcome to the family.

      Glad you found us. I know how you feel not having anyone understand what you are/have been going through. I also have a very supportive group of family and friends, but GBS is such a weird disease and has such strange manifestations that is is difficult for those of us who are patients to handle, much less to expect others to understand. I hope you find this site to be as much of a source of comfort and information as I have.

      Anyway, it sound like you are doing really well, allthough you may not feel like it right now. The main thing now is to be patient with yourself and allow yourself plenty of rest.

      Best wishes for good health.

    • Anonymous
      May 22, 2006 at 10:23 pm

      Thank you for the welcome. I am getting better. Started getting better after the first plasma exchange. Now I am at a stand still, I want to resume my normal life and it gets me down. I try to stay positive but it doesn’t work all the time. Reading others posts, it sounds like I am lucky to be getting better so fast even though it doesn’t seem fast to me. Another question, does anyone know of any support groups in the Florida area. Thank you

    • Anonymous
      May 23, 2006 at 1:41 am


      The paralysis in your face is not uncommon. I had facial paralysis that lasted a couple of months. Everyones recovery is different and you are still only in the very early stages of recovery. I know how it feels not to have people understand what you are going through. Keep your chin up and make as many posts on here as you like. It is a good place to express yourself as we all understand what GBS is like. I don’t know of any support groups in your area as I am in Austalia but i am sure someone will be along soon to tell you more.

      Hope to see your posts on here soon.

      Best Wishes