new to forums

    • Anonymous
      February 7, 2008 at 5:32 pm

      hi all,
      this is my first post and i was informed of the site by a physiologist at the christchurch hospital in new zealand.
      my story begins while i was in the antarctica for a short time and was hit by a case of the flu type a.
      a few days after i had recovered from the flu ,my legs were beginning to weaken,but being 58 years old and the type of terain i had been working on i thought that was the result of my fatigue,but it got worse quite rapidly with numbness in the legs and feet.
      the base doc gave me an exam,testing my lower limb reflexes and became very concered,so much he he me flown to the christchurch hospital where i spent a week being observered and seen by several doctors and two neuro specialist.
      their diagnosis was gbs and i was never treated with any meds.
      they told me that my condition was not serious and after they felt it had become stable,allowed me to fly home to the states.
      i just got home yesterday and the numbness seems a little more advanced than before and the tired wornout feeling is relentless.i seen my home town doc today and he is sending me to another neurologist for evaluation

    • February 7, 2008 at 6:13 pm

      Over how long of a period have your symptoms progressed? IVIG would be in immediate order. The best chance of a good recovery is to minimize the progression of the attack. Where do you reside now? Is it possible to see a doc asap for a confirmed dx? If you are getting weaker, the autoantibodies are still attacking. What tests have been done to confirm the dx?
      Dawn Kevies mom

    • Anonymous
      February 7, 2008 at 7:07 pm

      Please see Neurologist ASAP. Do not let symptoms increase. The sooner you are started on medication the better it will be for you.
      Welcome to the group. The people here are very informative and wonderful:)

    • Anonymous
      February 8, 2008 at 12:26 am

      Haggis

      My favorite article to copy and past is below. It explains the differences between the 3 ‘family’ members. Your case does seem to fit the profile perfectly, and often [I][B]if it is clear cut[/B][/I], doctors do not have to run a whole battery of tests to confirm, but a spinal tap can be very helpful. Very good on going for other evaluations, and if it is GBS or SIDP, the sooner you have them done the better so that IVIg or Plasmapharesis can be administered. One thing however is that, contrary to some thinking, if IVIg is administered to GBS or SIDP, it does not necessarily stop the progression, but can hasten the recovery time and help greatly with the recovery itself. No other meds are generally given except for pain if and when needed. One other thing to note is that regardless of how “mild” your case was/is, it cannot be pushed to the back as your residuals and problems can be long term and timely treatment, rehab etc certainly can play a big role in helping you achieve a more positive recovery.

      Quote:

      [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]
      [B]
      Article from the Summer 2006 GBS Newsletter[/B][/SIZE]

    • Anonymous
      February 8, 2008 at 9:49 am

      Alison,

      Thanks for this article. I really appreciated it as it gave me more insight in to some of the things I have been reading here.

      Janet

    • Anonymous
      February 8, 2008 at 10:33 am

      How soon will you be able to see this neurologist? If it’s not within the next day or so, I would call your family doctor back and ask to be admitted to the hospital immediately. Then ask your doctor to call the neurologist he referred you to to request an in-hospital consult once you’ve been admitted. And if he won’t do that for any reason, then go to the ER, tell them you have been diagnosed with GBS in New Zealand, that your weakness is still progressing, and you have not received any treatment. I guarantee that you will be admitted, and a neurologist will be called in for consultation. This is something you don’t want to wait about, especially if your condition continues to worsen. Every minute you wait to receive treatment, the harder it will be to recover. I hope you get the help you need soon; please keep us posted, and my prayers will be with you.