Your post this morning was very interesting. I'm happy to hear that you have managed to get past that dreaded last appointment, we all have been through them and know exactly how your feel.
Your neuro thinks you have narcolepsy? Do you think you have narcolepsy? I wonder where your doctor got this idea. Narcolepsy is really interesting but can be dangerous. I have an uncle who has narcolepsy. He has had episodes that were kind of funny at the time, but when you think about it, it can get you hurt.
How is the Provigil working for you? My neuro is willing to start me on it too to see if it helps with the fatigue. Fatigue is so challenging. It affects everything. Your social life, worklife, even sleep patterns. I sure hope it helps you.
It sounds like you have thought out the decision for surgery very well. I have a very bad disc in my thoracic spine that we are just in the watch and wait phase for. I had no idea that it could just disintegrate like yours did. I think your experiences demonstrate that I may bot want to wait too long to do something. My neurosurgeon is considered one of the best in the area for spinal issues and if something needed to be done surgically he would be the only one I'd let operate on my back. What was your recovery like from you surgery? Did you have any complications?
Sorry for all the questions.
Take care and I hope you can keep us updated on how you are doing.
I'm happy you're seeing your PCP this next Friday. Ask her what she thinks. Can she order the brain MRI on a 3T machine? I think, is a wise thing just to put your mind at rest. You had two different opinions and I get the feeling you're leaning toward the second opinion you mentioned, but are confused a bit because of the two different diagnosis.
Because Provigil is not a drug approved for MS (I don't think it is, unless things have changed), I think this is why narcolepsy was put down. This drug is sometimes next to impossible to get your insurance company to pay for it without the "right" diagnosis--quite expensive. Provigil is designed for narcolepsy, but has been shown to be effective with combating fatigue. I don't know, though. Maybe he really thinks that you have this. ?????? This is very interesting . . .
I would go with the surgery (IMHO). I have bulging discs in my neck, and right now they are not pressing on the cord and causing problems like you've mentioned. However, my neuro said that I may have to have surgery, too, in the future for the reasons you've stated. Heck, maybe some of your symptoms may just go away. Wouldn't that be nice?
Press on, girl.
Thank you both. I sent a detailed response to Sarahsmom46 offline.
The new neuro really thinks I have narcolepsy. After researching that on-line at mayoclinic ******* which is my favorite site and after googling narcoplexy, I do believe that I might actually have that. I have several of the symptoms and the cataplexia subtype really applies. My legs frequently do buckle when I laugh, sneeze, cough. (I thought everyone did!) The way I described my fatigue is why the neuro says narcolepsy and not MS for the fatigue issue. I wake up refreshed and within 2 hours can fall right back to sleep. When I lie down for a nap I can sleep for 2-4 hours and still sleep normally at night. (Endocrinologist says my thyroid levels are normal and are not causing the fatigue.) There are times when I am so tired that I want to crumple to the floor and sleep like a 3 year old but being an adult I struggle to my bed and sleep there.
Neurosurgeon still says MS.
So maybe I have MS & Narcolepsy with cataplexia & Cervical Spondylosis - - in addition to the confirmed Migraines & Hypothyroidism.
MS is alot easier to spell than everything else!!!
I'm ready to appear on TLC's Mystery Diagnosis show!
It's is important when MS is a consideration for your script to state MS. It will not mean that you have it, it's just so the radiologist can run the right sequences.
I do not feel that they can get the images they need from a 0.7 Open Bore.
If it were me, I would fight tooth and nail to get the 3T or at least the 1.5. I was dx'd on a 1.5, closed and the images were really good. Better even than the 1.5 open bore.
I know you have many other things that you have to consider where surgery is concerned, but again, if it were me, and knowing what I know now about MS, I would fight for new MRIs on the stronger machine. I'm doubtful they will deny you this since MS was brought up.