*UPDATE* Visit with New Neuro Doc

A board to discuss the Multiple Sclerosis modifying drug Copaxone

*UPDATE* Visit with New Neuro Doc

Postby tt89 » Mon Aug 25, 2008 4:40 pm

:? Ok as if I was not already confused enough about this MS since my Dx in Feb of this year!

I met with the new Neuro Doc ( Duke). Very nice doctor. He took alot of time with me which I greatly appreciated. However I left saying to myself "Who's right?" My first Neuro Doc or this one. He didn't seem to agree with much of anything that he saw in the records I brought him from my 1st Neuro Doc. For example, he was not impressed with what he saw on the MRI. He said the main spot/lesion my old Neuro is harping about is not one that would concern him as much as the lesion on the left side of my head. He also didn't seem to like the MG's of medication they were putting me on to start with. He felt they were too high and that coupled with the Betaseron I was on at the time.

He was especially upset when I initially went to the E.R. when I had my first attack and they treated me for a seizure and I had to wait to get into my Neuro Doc. He could not believe they sent me home with seizure meds and didn't even consult Neuro in the E.R or even do an MRI. They did a CT only which of course is useless for MS. I was having vicious electrical shock attacks right in front of their face that clearly were not seizures and they did nothing and that seem to really get to him.

However the thing that left me upset was that he said he felt that as sick as I am day in and day out ( even though I'm still working fulltime) he would lean on thinking I'm not a case of RRMS but rather a little more progressive even though my neuro checks were great but he said based on how sick I am, how much trouble I have with pain/stiffness and all and some days I'm holding the wall to balance myself and walk, he felt it might be more than RRMS but you can't really be given a certain test to determine that. He did said that based on what I told him that I have probably had 2 relapses since being diagnosed and that I did the right thing to call my doctor but they dropped the ball telling me to watch the symptoms a few days and call back ( that is the clinic I used to go to which has too many doctors and way to many patients). He said right then they should have jumped on that and taken action.

He told me that Copaxone is not his "go to guy" for MS. He prefers Betaseron/Rebif and Avenox. He told me that if I truly wanted the Tysabri, he would let me have it but I'd have to be watched extremely close on it but he's not an advocate of that drug by any means.

He wishes I was able to tolerate an interferon but I simply cannot do that but he asked me to consider it later on. I just don't think I can go down that road again. I spent from Feb to July on the Betaseron and stayed sick nonstop.

Any thoughts? He gave me Zanaflex ( the lowest dose) to help with the stiffness to take at bedtime. I didn't even fill the Rx yet because I just hate all those drugs. I'm not taking anything at this time other than my shots. I ceased taking Provigil and Baclofen all together.

Any ques...just ask. Trying to remember everything else. I don't know what to do at this point. I just want to be on the most aggressive meds for MS but I mean depending who you talk to, each claim theirs is the best and #1.

Oh he is sending me for a Urology consult since I get up 10 times a night to pee....he said its good I can at least me and not have to be cath'd but its totally messing up my sleep.

Repeat MRI's in December. Which would be a little less than a year from Dx.

I went to work after that and it was all I could do to get through my nursing shift but I did it...

:cry: It's been a day.

Thanks for listening.
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Postby Chaz » Tue Aug 26, 2008 10:32 am

I have to laugh at your comment about everyone thinking their treatment is "#1". I've found that to be totally true!!! Actually I've also found that everyone thinks their clinic and doctor are the "Top in the country."

Anyway, I think that as long as you stay involved in your care and track symptoms you'll be able to make a lot of progress with whatever doc you choose to stay with. This is a super scary/confusing time, but try to sort through all the info and ask questions!
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Postby tt89 » Tue Aug 26, 2008 6:35 pm

Thank you Chaz....

May I ask how long you've been on Copaxone?

I really don't want those Nurses calling me all the time for UPDATES...I feel like no matter what I tell them...they always have some solution that benefits STAYING on the drug.... :cry:

Anyway....I made some changes today..so I hope and pray for better days ahead....I had some great help from the general discussion form here on the site.

This site is great!
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Postby Sharon » Wed Aug 27, 2008 8:46 am

tt89

Just a thought
-
Oh he is sending me for a Urology consult since I get up 10 times a night to pee....he said its good I can at least me and not have to be cath'd but its totally messing up my sleep.


My understanding is that you can take LDN with Copaxone and LDN is known to help relieve bladder issues especially at night. You might consider the LDN.

Sharon
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Postby Loriyas » Wed Aug 27, 2008 10:10 am

Just went through all the testing with the urologist. There are medications that may help. Once you see the urologist you will have a better idea of what is going on. Good luck!
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Postby tt89 » Wed Aug 27, 2008 12:59 pm

Thank you Loriyas and Sharon... :-) You are all awesome
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