I found a new neurologist who I saw today. He treated me like a person with a problem not a chart. I've been logging my symptoms for a month and brought all that in along with all my test results. He decided to do some additional blood-work and I requested to be checked for any vitamin defficiencies or heavy metal poisoning (I was not checked for either in the hospital). He seems to think that I do have Guilliam-Barre. He said that he didn't want to do an EMG because it would be just unnecessary pain for me since it was very obvious just by my symptoms that it is neuropathy and more than likely affecting the small fibers since my symptoms were not severe. He is going to go over my MRI's that I had done previously and I will come back after 5 weeks. He prescribed Neurontin.

He did more in one day then my other Neurologist did in a month and I didn't have to play phone tag or talk to a machine.

Hi Bailey:

Thank god you found this person. I hope the neurontin works for you.

Take care, Melody

Is GOOD? Just a bit of patience is needed, no REQUIRED thru the whole process. I say this from experience. YES! We all want tests done at once?! Yes we all want ANSWERS at once?! It just does not happen that way.
By calling often, not essentially daily, you are polite, concerned and scared... convey that and ask IF there is a possible cancellation, but that you'd need 48 hours notice...as you mite have to cancel other appointments to 'make it'. This isn't unreasonable and should/could be accomodated.
As for doc scheduling? I've one doc who I can schedule twoplus years ahead? Another that I can do 18 months ahead and others? Only 4-6 months if lucky. Depends on the docs, their schedules, their 'agendas' [such as retirement or other evils?] and their computer capabilities.... Kind of kinky if you really think on it? Who's the most 'tech savvy'? And, then, does it matter? Or more...should it matter? Sigh. Too complex for this time of day!
IF you've GBS? It should show up in the conduction studies and the blood and spinal work. Once it's gone on a while? Then you go to the 'chronic' aspects which can become C[hronic] I[nflamatory] D[meyelinating] P[olyneuropathy] And don't let any doc put you off on this? CIDP can be devasting w/o good treatments.
This web site [which other great searchers had found?] is a solid, respectible and good research site.... http://neuromuscular.wustl.edu/alfindex.htm
Go thru the index? And then focus on what symptoms are rite for you...then Appreciate the 'whole menu'. It is vast and we can't blame docs for not instantly recognizing some medical issues. Other times? Well, don't get me started.
DONT give UP! Got that? Go get diagnosed if you can, and then get some treatments, but KNOW what they mite entail [good and bad?] as well.
Hugs 's and hope and soon! - j

Hi I am sorry that you are facing this but am glad you found a good neuro. That is a ray of hope when I do. I am on neurontin too and it can time to build up to the right dose for pain. As for long waits when I have them I call every day and one place I did it 2 times a day. I have gotten in months in advance.

The new doctor that I see told me that he would see me in 5 weeks, but if I had any problems whatsoever to call and they would get me in right away. Everyone in the office (which is small) was super nice and made me feel welcome. He even took me around and showed me everything there. What I liked the most was him saying that he would treat me the same way he would treat his family. I got more out one initial visit than i have with the other neuro office where I see a PA. There I can't get through to talk to a live person and when I do they are rude and i get the feeling pretty tired of my phone calls.

Should I be thinking about discontinuing Nortriptyline since I am on Neurontin, plus my psychiatrist put me on Celexa?

So, it's been 2 years since my dx. Since then, I had another episode last year. I got weak in the knees and spent 2 days in the hospital not being able to walk. All of my tests came back normal. It has been a year, and I had stopped going to the neurologist because after my second episode he basically told me this was nothing but stress-related and he could do nothing else for me. He sent me to a therapist and I went to counseling for several months. I recently started experiencing some numbness and tingling. At this point I am at complete loss with that exactly has been happening. After all of the testing, pain and other things, I ended up being told that this was psychosomatic. Really? For this long?

Sorry he said it was stress. I would just find another doctor. With my CFS and Dysautonomia, I have been to many doctors. Integrative MD's are the only doctors that have ever helped me. They can help with supplements for many things to actually help the body heal. I am so sorry you felt badly again.