Questions about diagnosis & meds

    • Anonymous
      April 1, 2007 at 4:25 pm

      I recently got out of the hospital, and I need some input from you veterans. Eight weeks before my hospitalization I had sudden foot drop and numbness below the knee in my right leg. Tests were negative for a blood clot, an MRI and an EMG were performed and it was treated as a mildy herniated S1/L5 disk in my back (Physical Therapy and Steroid shots in the back). Five weeks later, the same happened to my left leg and foot (all this included intense leg pain from about week two). At this time a second MRI was performed and the orthopeadic surgeon told me this this was not a back problem and sent me on to a neurologist. After perfoming an intense EMG, the neurologist admitted me into the hospital for a spinal tap and five IGG treatments for five days. His diagnosis was CIDP/GB. It turns out that the results of the spinal fluid test were negative, and I’m hoping that the diagnosis is wrong.

      Question 1: Has anyone else been diagnosed with CIDP/GB even though there were no elevated proteins in you spinal fluid?

      Question 2: What Rx do you take for this intense nerve pain, and do you have to take anything for muscle pain too?
      The pain is so intense that I can’t sleep, and the generic Neurontin doesn’t help much.

    • Anonymous
      April 1, 2007 at 5:18 pm


      Welcome, and I hope we can help with some of your questions.

      When you say CIDP/GB, does that mean he diagnosed you with CIDP and Guillain Barre’? I just wanted to clarify because the GB possily stands for something else.

      Many on the forum are either on Neurontin (or the generic like you), or on Lyrica. Sometimes, depending on the person, one of them dont work, or they have adverse reactions to one, and then try the the other with much greater success. I am not on either one of the above, but I know that the doses do go quite high, and if you are on a low dose, it should be able to go much higher – but I’m sure your doc would be able to help you out there.

    • Anonymous
      April 1, 2007 at 5:22 pm


      As I said in my previous post, I may have misunderstood you regarding the diagnosis of CIDP/GB. I guess regardless of that, here is a good article explaining the differences between the different 3 diagnosis’ of GBS, SIDP and CIDP. If you havent read this yet, i hope it will help explain some things.

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

      [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]


      If you register with the GBS Foundation, they will send you a whole lot of literature which may be of help as well.

    • Anonymous
      April 1, 2007 at 8:03 pm

      I think you will find several posts that where the initial spinal tap was negative.
      The pain is another issue. There are some meds besides Neurontin that some people appear to do better on. Neurontin is for nerve pain it doesn’t work well for mussel pain. As far as getting to sleep, I found that 2 mg of klonopin helps for about 4-5 hours, but like any drug it has a dark side that shows up when you try to stop taking it. Talk to your doctor and tell him/her what’s going on. They can’t see the pain. You have to tell them exactly what you feel

    • Anonymous
      April 1, 2007 at 10:45 pm

      The diagnosis is probable CIDP. I’m going to another neurologist next week for a second opinion.
      I’m calling tomorrow to ask for Lyrica instead of Gabapentin as several people have told me that Lyrica worked for them when nothing else would.

      How long does it take to recover from one of these episodes?

    • Anonymous
      April 2, 2007 at 9:45 am


      Let us know how it went with your other Neurologist. I’m not qualified answering your question about how long the episodes last for though, but Im sure you will have answers from other CIDP’ers

    • Anonymous
      April 2, 2007 at 10:59 am

      Welcome Michael… Jim C is right… According to an article at the site for the Swedish National Board for Health and Welfare [QUOTE]Apart from the myelin sheath, the inflammation also affects the barrier between the blood and central nervous system. Barrier damage may cause blood protein leakage into the cerebral spinal fluid, and in some cases elevated blood protein levels in this fluid is one indicator of the disease.[/QUOTE] the entire article can be found at [HTML][/HTML]
      It kind of seems like having the protein can definately show that you have it, but not having the protein will not rule it out because some people do not have the above leakage…

      Hoping you all the best…

    • Anonymous
      April 2, 2007 at 5:59 pm

      Hi Michael –

      1) My daughter was dx’d with CIDP with spinal protein levels of 93 & 96 (or around those numbers – I tend to forget what they were exactly). She’s been treated over the last year with IVIG and had a repeat spinal in November which showed a normal protein level of 45. Her disease is still active though – the MRI showed inflammation along her spine from the lower lumbar down. So yes, it is possible to have CIDP but normal protein in your spinal fluid.

      2) Emily is lucky in that the pain hasn’t been too bad. She usually can just take some Motrin & she’s fine. You should talk with your neuro about other drugs if the neurontin isn’t working.

      Good luck.

    • Anonymous
      April 2, 2007 at 6:55 pm

      Thank you. I go for my second opinion next Tuesday. I’ll let you know if the Lyrica works for me.

    • Anonymous
      April 4, 2007 at 7:01 pm

      I found that, for me, Lyrica works much better than Neurotin. I also discovered that it’s not all nerve pain, so I’ve also got a pain reliever.

    • Anonymous
      April 4, 2007 at 7:52 pm


      I sincerely apologise for calling you ‘Michelle’! 😮 I cant blame it on brain fog as your name was starring me in the face, maybe I can get away with blaming it on old age 😀 .

    • Anonymous
      April 5, 2007 at 7:56 pm

      No problem. I believe it’s pronounced like Michelle in French.