Appt tomorrow

[texasgirl150]

Tomorrow I finally go back to the neuro. I have my list ready. I plan on hearing him out and then I need to find the words to ask him about a definitive diagnosis without sounding crazy.

I NEED to know what is going on. My list grows weekly..sometimes daily.

Any suggestions??

[summerluvr]

he didn't offer any insight?  something is obviously causing pain so instead of just taking pills it wouold be nice to know what is causijng it!

Side note is that Lyrica worked well for my nerve pain. It just made me put on wieght!  I was on 300 mg a day so not really near the uppe dosing,

[Lulu54]

Yes, TG, this is extremely frustrating.  If only I had a magic wand to wave and make it all better.  You don't want this MiSerable disease, but you also want answers.

Did this neuro say he would stick with you until one is found?  You're in the toughest of all places right now - I wish we could do more for you.

hugs, Lulu

[texasgirl150]

Red-yes I have read that most and almost fell out of the chair when he started telling me all if this. I may not have MS and I'm fine with that, but what is wrong with me??

I do not want to go to a pain clinic! I cannot function in narcotics. Plus I will just become immune to it and then they will not work either.

I'm soooo frustrated!

Ok now time to take a deep breathe and calm down.

[houseofallboys]

Well I hope you will find some relief with the rheumatologist.....I know you are about as sick of this as I am....
I'm still stuck in limbo as well.....I'm waiting on call back from neuro office about a 5 digit code for some crazy mri she wants to see if my insurance will approve....
She said that 10 years ago I would be dx with MS but with clear mri with no lesions ...she will not dx with MS because she wants to be 100 percent sure...which I'm happy for but really tired of sitting in limbo with no clear sign that my symptoms  are going away....I try not to think about it most days but when your body is doing crazy things and you just don't feel good it's hard to ignore...

I hope all goes well with your upcoming surgery and you find answers/ help soon

[RedFlame]

This is the best advice I could every give.  I suggest reading it, re-reading it and taking notes.  This helped me so much Good Luck   Red

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

[texasgirl150]

Well....it did not go as planned. He said I do not have MS. No lesions on the brain therefor it cannot be MS. He said that whatever is going on is not neurological. He may send me to a rhuematologist for trigger point injections.

he wants to keep trying to get the lyrica up higher. If that does not work, then he will send me to a pain clinic.

He said that my case is one of the most complicated pain cases he has ever had?!?!

Sooo I have a lot to think about.

Oh he further said that my MRI is normal.

[texasgirl150]

Thank you! Excellent advise!! My appt is at 8:15 this morning. I'll post later how it goes.

[wiggles94]

Hi texas girl,

Good idea to be prepared with all questions for your neuro.  Are you going to bring someone with you to be a second set of ears?  Obviously someone who is a good listener?

Review your list to make sure ALL  questions are answered before you let the doc out of the room.

Leave room on your list to write down answers.  

Make sure you have a plan of what your next step is in your treatment/testing and you agree with it.  If something the doc suggests doesn't make sense - ask for the reason.  

If you don't get satisfaction with what docs plan is, tell them you need 2nd opinion and ask for suggestions of where you could go.  GOOD docs are fine with this and expect it in a situation that may be tricky.

Are you also bringing a list of your symptoms you have been experiencing?

Here are some generic questions that may help:?

1.  What leads you to believe I have (whatever the dx is)

2.  Are there tests we can do to help with a dx?

3.  What are symptoms I need to be concerned about and call you with? AND if I have questions of a general nature who can I call for answers?  (maybe a nurse/PA)???

4.  Plan to move forward - next appt, more testing, treatment?

5.  Why are you recommending that treatment?

Good luck to you and I hope you have a good appointment!

carol