Introducing myself :)
AnonymousJanuary 28, 2008 at 8:14 pm
I have been reading your posts and thought I”d introduce myself as a new member. My name is Cat Mayhew. I’m 21 years old and live in Milwaukee. Long story short, I have been suffering some kind of bad for the last two years, hitting a peak 8 months after being diagnosed with Advanced Lyme Disease. (Short timeline, Bit in June/july… moved to Europe in late August, diagnosed with lyme in late September… Admitted to hospital in March). After spending way too long in the hospital, I decided to pre-take my exams and graduated from school early in May. Every day it was, one more week. I couldn’t walk straight, I was in so much pain, I couldn’t even talk straight at one point. Decided to move home to seek mass help. My dad (Pick’s Disease) has been working with a neurologist who requested that I see him when I got home. After now three MRIs, seven spinal taps (4 in Europe), and enough blood to choke a vampire, Still not a whole lot of answers. What we do know is I have reflexes, its impossible for me to run a fever, I have complete neuroppothy in my right side, and I’m “still recovering from Lyme”. I run a very low body temperature (96.8 is normal) and have to layer constantly to keep my hands and feet warm. I was explaining to Kit (LadyKitUSA) about the randomness of a EMG/Nerve study they did. I laughed when they did it not realizing the full extent of the reprecussions:
They have done multiple LPs (up to 8 I think now), a nerve conduction… both the cattle prodd and needle thing. The doctor had to turn the machine on and off to make sure it wasn’t malfunctioning. Not only was it not registering the shocks on the highest setting, it wasn’t even making me twitch. he then did the needles on my spine and i felt it go up into my brain, but there was no register on the machine. to make sure the things were scewed, he did the same thing on a different machine. Same results. little to no conduction. It is worse in the lower part of my back.
On the side he told me they are researching additional things at no charge, but they do not have alot of answers.
So I know I”ve gone on for too long, but my mother actually approached me about GBS just yesterday. I have to say, I started to cry at the bittersweetness that it was, but I’m beginning to accept it. I do have an appointment coming up and have already mentioned the possibility of GBS. Last time they wanted to diagnose MIddle stage MS, but they knew that was impossible as, well, I’m 21. Beyond that, I really don’t know how else to approach this except to go in and say, “I can’t see straight, i can’t feel half my body and sometimes all of it, I am in so much pain i can’t function, I sleep for days on end and can’t move, I can’t talk straight, and you have no idea what’s wrong with me. For now, gimme some pain killers and do all the tests you want.”
I’m just so frustrated. I am keeping my head up, and have been paid some of the highest complement the past few days of my ability to go above and beyond, that I am one of the kindest people they’ve met, and I’ve gotten SO good at hiding my pain that my sister is the only one who knew in one of my classes. People treat me differently if they know what’s really going on… I’m calling my internalist this week to see if he has anyone in mind. He’s the one who diagnosed my mother (MS… yeah, talk about issues) and knows that THIS is not MS. Really, I don’t know what to do. Crazy stupid stuff we deal with.
AnonymousJanuary 28, 2008 at 9:53 pm
hi cat & welcome,
when the Dx is near impossible as yours is, the docs need to try a shotgun approach to an Rx. you need to try neurontin. 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. you must get your pain under control. a pain clinic is also a good thought. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 29, 2008 at 10:52 am
Hello and welcome Cat,
I’m sorry if you have read this particular article before, I seem to post it a great deal on the forum, however, it is very imformative.
[B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences
Between GBS, CIDP and Related Disorders[/SIZE][/FONT][/B]
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]
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