TAKE the time, Go and get that diagnosis, no matter how fuzzily. Why? Because, from what you've said...you are going to have to MAP out for docs how FAST things are not working well. I believe you know where I'm coming from.. And That to be able to summarize all this crud, or deterioration? Will be the key to your diagnosis.. Time when X-doesn't work? Then Time when Y doesn't work.. Onwards down the 'bet'. Or upwards as it may happen. Still. DO NOT get caught in the quagmires...Get and keep any test results...It IS your right. And should a doc 'discount' YOU for any reason? You've the tests to prove that perspective wrong. I've been there? But somehow I knew what I was dealing with, and dealt my own 'hand' well, so to speak. The whole diagnostic phases are as stressful as can be? Once thru that? My own processes of a cancer diagnosis [and other things] - later, were a piece if cake! I simply told all 'testors' I AM TRAINED! And They could tell. Thanks to all my techs! They never let me panic!
Bailey? I can't imagine living soo close to such an 'event' and what it could do to you? I only hope that your body is strong enough to escape the worst of all the side effects! That and your spirit as well!!!!!!!!!!!! -cant do enuf of these things! Ya know? - j

I had my nerve conduction study done last week and now I am waiting on results of that. I noticed last week that I have a dull pain at my coccyx, especially when I bend down. Weird...

There are good days and there are bad days. Today is a bad day. The pain level is about 7 on the scale of 1-10. I'm hoping for just one day like today this week. Also, my face is numb (WTF) along with my arms and legs. I spent most of the day in heavy fog of dizziness. I'm losing my balance on every corner and my feet no longer "listen" to me. Played phone tag with Neuro office, found out I have an old compressed nerve in my neck. My appt is a month away... Now, what?

While things are 'hot' so to speak? I know what you're going thru, and it can scare you spitless? But the best thing YOU can do is keep a short simple steno pad next to you and outline date and TIME each new 'quirk' is popping up. Believe me, docs have short attention spans and you need to keep all panic out of your own 'assessment of yourself'. Essentially, you need to sell your 'case' to the doc as a real and honest one. THEN Say you're scared spitless. That way, docs KNOW you can and DO think clearly and are learning that you know enuf, tho not all,....NOT to be snowed by 'fat words'. When such 'words' are thrown out? I hand them my 'steno pad' and ask them to print whatever out CLEARLY. WOW! You'll understand their faces if you get the fat word speil....
Explain to the docs office that you are seeming to 'go downhill fast' and if you don't get a call-back that day? Call the next and cite the TIME you called the day before etc First in the AM then in the PM and keep doing it!... Seeing a doc in the offices is far, far less stressful than in an ER! Trust me, and others here on that!
My heart and a bit of strength that I can spare are with you! Hope and soon! Tho it may seem that glaciers move more rapidly than diagnoses! 's - j

Hi Bailey:

I felt so bad for you when I read your post. You have new friends here. I hope you get your answers and SOON!!!

Hang in there. Keep taking your B-12.

Melody

Is there even a point in going to see my GP? My neuro appt is in 30 days. Last week I was in pain a lot. I have stabbing pains in my shoulders that go through my arms and then down my back into my legs. My feet burn slightly and I have lots of numbness in my arms and legs. Been taking nortryptiline for 3 weeks now and not seeing any improvement at all.

ETA: I have headaches nearly every day now and eye pain mainly on the right side.. So far haven't been able to have any relief when I take OTC meds.

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.