Guillain-Barre Syndrome

[kristen]

First of all, I'll preface this by saying that my heart goes out to everyone on this board. When I compare my story to others, mine seems like a cakewalk. But I'm really confused as to what's going on. I'm 32 & a newly diagnosed diabetic (July 2007), but am in good shape, am slim, & work out daily. I'm on Metformin. I work part-time and we have two toddlers.

My symptoms started August 23. My toes/feet had been a little numb for years, which I now realize was likely a result of insulin resistance, but no burning/pain. On 8/23, the numbness spread to my legs; on 8/24 up my trunk & to my shoulders, then by 8/25 went down my arms & up my neck. Numbness was just on the outer layer of skin, but definitely present. Definite weakness in legs, up to knee. Went to my doctor, who ran several blood tests (kidney function, thyroid, vitamin B, etc.) and all were normal. Went to another doctor & a neurologist, who immediately suspected Guillain Barre' and ordered an MRI of the brain and cervical spine. Both normal. Nerve conduction studies revealed "early sensory neuropathy" in toes but everything else normal.

Followed up with yet another neurologist & he performed another nerve conduction study, at my request, in December '07. Sensory neuropathy had worsened considerably in feet, legs & hands, so did a lumbar puncture. It was normal, no protein. Now I'm scheduled for IVIG in a week.

My worst fear is that this could be caused by diabetes but all 6 doctors I've been to have said that is very uncommon, especially for well-controlled diabetes The numbness definitely does seem to go through periods of worsening, about once/month now. And when it worsens, I feel increased weakness in legs.But other than my symptoms, there are no physiological signs that point towards CIPD or Guillain Barre'. Both of these things seem much more extreme than what I have, but some of my symptoms seem to mimic them. Again, I feel really fortunate that I can still walk around & am not bed-bound, but this has been going on for 6 months now & has really taken its toll emotionally/mentally. I'm just confused... I will try the IVIG, but it seems to come with its own set of risks.

I'm really sorry this is so long! But if anyone has any ideas or thoughts to share, I'd love to hear them. I just wish I had a concrete diagnosis instead of a guess, which I know is all my neurologist can give me right now.

[frank bullitt]

Kristen,
It is hard to say if you have diabetes to add to the equation. I can tell you this. On Novemer16, 07 I went to the ER. My symptoms were weakness in my arms and legs, my facial muscle were almost completely paralyzed. At first everyone said it was bell's palsy, then they suspected a stroke. I was poked and proded for everything.The neurologist checked me out in the ER and diagnosed GBS. They started me on the IVIG that night. I am now working on getting back to where I was before November. I have talked to several people with GBS and it does affect everyone differently. I will tell you this. They told they caught it early. I honestly believe if I hadn't of had the IVIG, I wouldn't be here now. I had the conductivity tests as well. I could even tell you, things weren't working like they shoud. Keep your spirits up. Once you hit your weakest point, you will need to start working on getting stronger again. I recommend starting out very easy.

I wish you a speedy recovery. Hang in there.

Frank B.

[horselover]

Kristen
Hang in there! Yes, the IVIg has some risk associated with it but if GBS is causing your symptoms the stuff is miraculous. My progression was quick. I went from walking normally to paralysis in 3 weeks time. I couldn't walk or even sit up. I went to the hospital for an EMG and was admitted to the hospital as soon as the Dr. saw the results. He said based on the results he was willing to say that he was 95%-98% sure I had GBS. I was in the hospital for another day having a million other tests, including a 2 hr.MRI at 1am--not fun. Then my favorite part, the spinal tap-ouch! Mine did have the increased protein and they started the IVIg that night. The next morning I could move my legs some. The day after that I could sit up and I continued to improve at that rate. By the end of my 5th dose I was up walking a short distance with a walker. I guess everyone has slightly different symptoms. One of my most annoying was that I lost my sense of taste. Everything tasted like salty cardboard. What made it worse was my sense of smell was perfect! Within 2 days of my treatment I could taste again--yeah! My syndrome started 3 months ago and the end of my nose still tingles-annoying but livable. I'm back to work part-time working my way back up to full-time. Thank God for the IVIg, it got me started on the road to recovery.