Oh, Bailey!

I'd do what dalek suggested and call your neurologist every day with your list of things piling up. I've been blogging my experiences everyday so I have a log of what's been going on.

I was in your same position about getting into the neuro I used years ago - they said I was considered a new patient and couldn't get in for a month. I was able to make an appointment with his associate and got in the following week, which was too long due to my pain but it did work out. I had all the tests run last week but now I have to wait two weeks for the results, which is driving me batty because my symptoms are getting worse, sometimes by the hour.

Can you find another neurologist you can see immediately or is this one on your insurance plan and/or recommended?

My heart and prayers go out to you. And I'm crying for you.

Actually, I'm an existing patient now and I have no clue why they would schedule it that far off, but at the time of my initial follow-up visit I didn't fully realize what was happening to me and with a very vague diagnosis I just went along with whatever the PA suggested (no, the neurologist wouldn't see me for follow-up). I called last week and had to leave yet another message for them to send copies of everything to my GP. I thought that maybe the PA I see for my primary care could refer me to someone (not that I can't find a neuro, but though this would work better). But I feel that even if he does refer me to someone, it may still be a month before I can get in and that would be kind of pointless. There are several neurologists in the network, but I'm really not sure how to choose the best one.

I was initially diagnosed with SFN.
But my symptoms are more like PN, and my Neuro has mentioned that.
My onset was fall of 07, and I'm still struggling with this without a positive diagnosis.
The only thing I'm on is gabbapentin for pain (which helps somewhat), Effexor (oddly enough I think better on it), and 500mg of Magnesium.
I went through all the testing as you have, and wanted to know each time "do I have this or that" hoping to get a final diagnosis.
My advice to you is make notes, lots of them. If you have a new symptom, write it down with the intensity, frequency, what you are doing at the time, etc. This can only help the Dr figure out what you have, and how to treat it.
I've had the numbness in certain parts, or all over. I have the washed out feeling every afternoon (and sometimes all day), the dizziness, the walking in a fog feeling, blurry vision, etc. The more you tell them the better IMHO. It's all got to fit somewhere.
Hang in there, you'll find out how to treat your symptoms, and how to live with this.

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.

Your symptoms sound like mine. I hope you get answers soon.