Saw new neuro on Monday

[twitchychick]

Well, after the 4 month wait to see the "movement specialist" neuro, he came in, introduced himself, told us (hubby and I) about his education and residency, informed us that he specialized in Parkinson's disease, and wasn't sure he could help but would take a look.  He checked my reflexes, looked in my eyes, had me follow his finger with my gaze and told me he thought it was nerve pain or atypical migraine.  He then looked at the 2008 MRI that I had brought (before symptoms) and told me the film looked good.  He mentioned Tegretol about 10 times.  

He said that since I did not have current tremors that he did not feel he would be able to help me but he thought another dr that specialized in head/face pain was very good and he wanted me to see him.  I asked him if atypical migraine could make my foot feel frozen, my back feel wet and my genital area to feel numb.  He said yes to all.  I asked about a few more symptoms, like the fact that I can't move my left foot at times.  He stuck a couple of pins in my feet and said he thought it was from the migraine but he wanted me to see the other dr.

He wrote me a script for Tegretol, walked us to reception and told them to make me an appt. with the new dr.  I never put on a gown, he never asked me to take a step, never even actually touched me, never mentioned a new MRI, never even considered it could be something with my neck, spine, etc..

I walked to reception, made my co-pay and was told the new doc couldn't see me until July 2011.  His appts for new patients take an hour.  He had some earlier 15 minute appts, but none that I could have. I needed an hour since I was new. They put me on a wait list.  They said the new dr is very good and people come from all over to see him. I thought hubby was gonna stroke out right there.

I started the Tegretol last night.  Can you drink alcohol with that?  I'm not a big drinker, but thinkin about taking it up. :)

Any thoughts?

[daisy.girl]

Not sure where you live in Oklahoma, but here is a list of MS specialists in or near Oklahoma City.....if not, you can scan to the bottom and type in your city.

http://www.vitals.com/disorders/ok-oklahoma_city-immune_system_disorders-c20-multiple_sclerosis_ms-8730.html

[twitchychick]

I think I'm gonna give this med a whirl. Why not? I've got plenty of time. :-D

He said if it's gonna help, I will know within 3 to 4 weeks.  If it is not better by then, it will probably not help the pain.  So, just wondering...if it doesn't help, do I just stop it and go back to what I was doing till July? I Don't Think So!

He made a comment about people who have migraines (which I do, but they were totally different than this) sometimes when they reach 50 or 60 years old they have a lot of strange sensations throughout their body, but no headaches.  It is still considered migraine. I'm 43.  Guess I better start eating dinner @ 4:00.

In the beginning of all this I would cry sometimes, out of frustration, after an appointment like this.  I've learned not to put all my eggs in one basket, so to speak.  Regardless of whether I have a dx or not, I still have to figure out how to manage this pain.  Maybe this new med will help.  I certainly hope so.

And no, I have not been dx with ms. Just a peripheral nerve disorder, with other random symptoms.  I called my pcp to see if she would refer me to my town's only neuro so she could manage the new med while I waited.  The pcp's office informed me the only neuro moved out of state so I guess I'm up you-know-what creek.

[COBOB]

I still have to pitch bales.  I carry them over to the fence but only toss flakes.  Anyhow, You can take ibuprofen or other NSAIDs, since Tegretol is an anti-seizure drug.  I had to get up to 200 mg 3 times a day to get relief, but I;m taking it for Trigeminal Neuralgia.

Bob

[twitchychick]

Bob,

Kind of kidding about the drinking.  Just so dang frustrating!

He started me on 200 mg, 1x/day for 7 days, then 1 am and 1 pm.  He did say if it was going to help that I would know in 3 or 4 weeks.  Can I take ibuprofen while I'm waiting?  How long did it take for you to have relief from the Tegretol?

I noticed you said you have a small ranch in Colorado.  I live on a ranch in Oklahoma.  Thank God I don't have to do the feeding.

[daisy.girl]

sorry to hear about how your appointment went. My first neuro told me all my symptoms were migraine related, neck/arm pain aching, tingling burning. Losing my balance, and urinary freq and leaking.

Finally when I got double vision.....I went to a new neurologist.....he suspected MS at my initial visit. I went through all the testing to rule-out mimics, and rule -in MS.

After about 6 weeks, I was diagnosed.

My understanding from listening to others is that migraine is often given as a dx when doctors are unable to figure out what is really wrong.

Are you diagnosed with MS? If not, I would highly recommend you find an MS specialist to see.

[COBOB]

I take 200 mg three times a day.  You need to titrate up to that dose.  I started with 100mg twice a day.  I have a couple of beers.  It doesn't seem to kill me.

Bob