Family member in desperate situation

    • Anonymous
      February 20, 2007 at 12:52 pm

      Hi all,
      My 65 year old stepmother was diagnosed in November with GBS. It started with some falling, and progressed once she was in the hospital to paralysis from her trunk down and what looked like Bell’s Palsy in her face, and severe pain in her back around her shoulders. She was given the IVIG treatment as soon as the diagnosis was made. Her face is back to normal and some of the paralysis has been resolved, but she is still in severe pain. They live around Tyler, Tx and her neurologist has never treated anyone with GBS. I’m not sure if he is consulting or what. She is still in severe pain 24/7. Is this common in GBS patients? Does anyone know of a doctor in their area who is familar in treating GBS? I live 5 hours away from them and my 70 year old father is trying to care for her. They are both diabetic, and due to the pain, they are not getting much sleep and are in a desperate situation. I spoke my father on Friday and he said they cancelled her therapy because she is not able to participate due to the pain. Her neuro wants to do another round of IVIG, but now the insurance company is balking. Any help would be greatly appreciated.

    • Anonymous
      February 20, 2007 at 1:43 pm


      Yes, pain is a very common symptom of GBS.

      There are many ways to treat it. Many here find that anti-seisure drugs such as Neurontin in combination with anti-depressant drugs, and sometimes with narcotics are the key. Each individual is different, so sometimes trial and error is involved.

      I had GBS 3 yrs ago and it began with the most excruciating pain I have ever experienced. The pain was in my back and shoulders, as you described with your step mother. My doctor was able to relieve the pain during the 3-4 weeks of the worst part by giving me an initial shot of Dilaudid, and thereafter 5mg of Dilaudid every 2 hours, night and day. It was a life saver for for me, although some of the medical iterature says that opioids are not very effective for neurological pain. I really feel so bad for your step mother because I know first hand how awful GBS pain can get.

      She needs to be given more IVig quickly, and as often as needed until the disease has run it’s course. The purpose of this is to [U]halt the damage[U[/U]][/U] being done to her nerves by the disease. Without treatment, she may still recover, but her recovery could be much less complete if the disease is allowed to run rampant through her body until the disease runs its course. It sounds as if your father has his hands full with his own medical condition, plus trying to care for your father. You many need to act as advocate for your stepmother. Be insistent. The only reason insurance companyies balk at treatment is because IVig is very expensive. That should not be a reason to compromise her future health. Time is of the essence.

      Others hear may know a neurologist in your area who can help.

      Best wishes,


    • Anonymous
      February 20, 2007 at 11:03 pm

      Regarding the question about pain, most of GBS patients suffer from terrible pain, which lasts often years after ‘recovery’. It, along with fatigue, is one of the most common residuals.

      Regarding the IVIg. Why does her doctor want to give her a course of IVIg? In GBS, the myelin sheath and/or nevers are attacked anywhere up to 4 weeks, then the attack stops. It is important to have the IVig during this period to try and stop further attack and damage to the nerves. However, unless she has the relapsing/remitting type of GBS, meaning, that she in a sense gets GBS again and again and again (new attacks all the time), which is very rare (and I know of someone on the forum that does have that type), then the IVIg will not help because the nerves are not being attacked. I seemed to have started the same way as your step mother with the diagnosis of Bells Palsy, and sever back and neck pain. As you said, her paralysis seems to have been resolved and it only seems to be the pain that is the issue now, in that case, it SEEMS as if she isnt having another attack, so from papers that have been published in the Communicator etc. IVIg will not be helpful.

      [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.[B] 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][B]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).[/B]

      [/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).[B][SIZE=3] 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]


      I hope this helps in some way. [/SIZE][/FONT][/B]

    • Anonymous
      February 20, 2007 at 11:06 pm

      Sorry, I meant to mention I highlighted the more ‘relevant’ parts, and near the bottom of the article I highlighted and increased the font in the hopethat it would be easier for you to see the relevant sentances.

    • Anonymous
      February 21, 2007 at 1:37 pm

      Thanks so much for all of your information. Everytime I’m able to speak to him I learn a little more. He informed me today that Medicare is refusing to cover saying that IVIG is not covered. Her neuro has diagnosed her with CIDP.

    • Anonymous
      February 21, 2007 at 9:48 pm


      she needs neurontin. how comw the docs have not started her on it? many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it.

      TX Mike Yuan, MD. Neurology & Pain Management Bellaire Clinic, 9110 Bellaire
      Boulevard, Suite H, Houston, TX 77036, Phone: 713-490-1493
      4703 Brookview Drive, Sugar Land, TX 77479-3073

      Dallas: one of the world’s most renounded GBS Immunologists, Richard Wasserman, M.D. Fax: 972-566-8837

      Dr. Pinky Tiwari. her office is in St Luke’s Medical Towers. She has privileges at the hospital.

      John D. Rossi 920 Medical Plaza Dr. Suite 470 The Woodlands [north houston, near bush int’l airport], TX 77380

      Houston’s Medical Center named Dr. Steven B. Inbody. He is a board certified neurologist who specializes in CIDP.
      his website at: [url][/url]

      Abilene – Dr. Paul Harris. He is the only one I found that has any knowledge/experince with GBS in Abilene.

      suburban hospital (West Houston Hospital, Dr. Gaer NOT recommended) by someone here.

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