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If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Hello everyone

Postby FIESTAFROG » Sat May 31, 2008 7:01 pm

Hello,
I am new here. I will spend hours reading the great posts! I did a search, however, and did not find a response. I am sure its here because it seems a common question.

How do I know what medication I should do? My Neuroligist said to go home and read up on them and pick one. Is this normal? How do I pick one?

I know basics, like how many times a day/week etc. But how do I know which one is going to be the best in the long run? I'll do whatever to slow this monster!

David
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Re: Hello everyone

Postby gwa » Sat May 31, 2008 7:09 pm

FIESTAFROG wrote:
How do I know what medication I should do? My Neuroligist said to go home and read up on them and pick one. Is this normal? How do I pick one?

I know basics, like how many times a day/week etc. But how do I know which one is going to be the best in the long run? I'll do whatever to slow this monster!

David


The best thing to do is pick a new neurologist. What a lame excuse for a doctor. What if every doctor told people to do what this guy told you?

I have no patience with jerk doctors.

gwa
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Postby FIESTAFROG » Sat May 31, 2008 7:11 pm

I guess! So the Dr. should know which med I should take?
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Postby Terry » Sat May 31, 2008 7:36 pm

My neuro told me the same thing. Go read and choose. He sent me out of the office with four cases of info. I chose none.
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Postby gwa » Sat May 31, 2008 7:41 pm

FIESTAFROG wrote:I guess! So the Dr. should know which med I should take?


He obviously has no clue or he would have advised you. He just told you that you have a chronic, possibly crippling, incurable disease and then he wants you to decide on your own treatment?? I rather imagine that you are not in a good frame of reference to study and decipher on your own what med to take.

Unfortunately, there are no long tern studies which show that any of the meds currently available are worth much of anything. If he had some decent research, he might be more helpful.

It is a good thing that you don't need surgery. Try doing that on your own.

gwa
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Postby jimmylegs » Sat May 31, 2008 7:53 pm

my gang said "take rebif" and i said "no thanks" and that was the last i saw of them lol!
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Postby cheerleader » Sun Jun 01, 2008 8:17 am

David...
Welcome to the site. Sorry your doc gave you so little to go on. There are many things to consider. First of all, gwa is probably right and you need to find a more proactive neuro. Your doctor should have an opinion on which meds will be best for you. That's why they get the diplomas on the wall!


Do you know if you have a progressive form of MS or relapsing/remitting MS? Did you have a lumbar puncture? Do you have many lesions shown on MRI? Where are they located? How much disability do you have? Have you been tested for Lyme, a viral infection, Hughes syndrome, nutritional deficits? These are just a few of the questions which can assist your doc in making a diagnosis and choosing a disease modifying program. AND, you should have the answers to all these questions. As a patient, it is up to your doctor to do all the tests and inform you...not the other way around.

As an example, my husband had a positive LP for RRMS, positive MRI, and presented with first flare at age 44. Due to his presentation and limited damage from the disease after steroids, his neuro suggested copaxone, since men in his category had done well in clinical trials. She also suggested diet, nutritional supplements and exercise. She had many medically based opinions...

As I write this, I'm getting infuriated :twisted:
Good luck, David...I'd really suggest searching your area for a more "opinionated" neuro.

best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby daverestonvirginia » Sun Jun 01, 2008 10:51 am

My doctor went at it in just a little differnt way. Yes, he gave me lots of information on the meds, but he said read up on them and lets get together again and decide which one is best for you. Much better way to go about it, as I was most concerned about side effects, we settled on copaxone. Even though you have to take it every day it seems to have almost no side effects. I have been on it for over two years with good results.
But, taking it a step further, after doing more research on the web, I also decided to go on the Best Bet Diet (BBD) and the recommended supplements associated with the BBD. That's were my doctor said that's fine but offered no support.
It all comes down to as most people end up realizing, we all end up having to do what we think is best and not depend on the doctor to run the show.
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Postby FIESTAFROG » Sun Jun 01, 2008 10:51 am

My Doctor is from india and its hard to understand what she is saying. She seems very intellegent, but not very helpful. It all started 2 years ago with serious vertigo that I thought was inner ear problems. I had an MRI that showed legions? located in the stem part of the brain. Not a normal area for MS i was told. The lumbar puncure showed signs of MS. They lost my bloodwork so I have to go get that done again tomorrow. At that point, she will be able to dx me.

I am very tired all the time, weak feeling. Other than that, I am not debilitated yet.

I really dont mind which med I take, just as long as its the best for me! I plan on spending much time reading the post hear on the different meds. Thank you all for posting this information for someone new to the who is scared and lacks the information!

The worst thing about this monster is that it is different for everyone so you never get that "your gunna be this or this is going to happen". Like most, I just want to know whats going to happen to me!

Thank you again for you warm comments

David age 43 school teacher,
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Postby cheerleader » Sun Jun 01, 2008 2:24 pm

Hi Dave...
You're right, brain stem lesions are not common in MS, more prevalent in brainstem strokes or TIAs Please read Misdiagnosed's post regarding Hughes' Syndrome and ask your doc for complete bloodwork.
http://www.thisisms.com/ftopict-5526-.html

best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby FIESTAFROG » Sun Jun 01, 2008 2:41 pm

Im going for bloodwork tomorrow and I noticed the box "antiphospholipid" is check on my bloodwork request. I assume that means she is checking for it?

David
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Postby cheerleader » Sun Jun 01, 2008 3:24 pm

yup, that's it!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Punchy » Sun Jun 01, 2008 7:25 pm

The brain stem most certainly is a common spot for lesions with MS, and vertigo is most definitely an MS symptom. I have had two relapses with vertigo.

And my neurologist is a very well respected expert in the MS community, yet he sent me on my way with the information kits on Rebif, Copaxone and Avonex and told me to decide for myself.

It's always a good idea to ask questions, but in my opinion everything sounds like it's on track for you, Dave. I wish you the best in this difficult time.
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Postby ssmme » Sun Jun 01, 2008 8:31 pm

I agree with Punchy. My neuro is very well respected but did not force any specific CRAB in my face. I was given all the information and told to read up on it and bring back any questions. I was happy he didn't push one on me specifically. If he were pushing me to take one over another without specific evidence as to why then I would think he was incahoots (sp?) with a drug company - especially since the CRAB drugs are really not effective for everyone. I think in the end it's up to you to decide how often you'd like to take injections. You might start with one and decide it's side effects are too much then try another and they may be more tolerable. The only thing predictable about ms is that it's totally unpredictable. I think the CRAB drugs fall into this same category. Just because a specific CRAB works for someone else does not necessarily mean it will work for you. You'll know after a few months if the side effects are minimal or too much. I wish you luck in finding one that works for you.

I have a second cousin who takes rebif and has no side effects or injection site reactions and has only had two relapses in 4 years. I have another friend who takes copaxone and swears by it. A third person I know has tried everything but the side effects (flu like symptoms) and injection site reactions (huge red welts that leave dents in her flesh) have caused her to look for alternatives to the standard CRAB drugs.

Please don't get discouraged. Pick one that you think will fit your lifestyle then change it if it doesn't work out.

Good luck,
Marcia
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Postby cheerleader » Sun Jun 01, 2008 8:46 pm

A bit 'o clarification-
My husband wasn't forced into taking Copaxone, his neuro gave him information on all the CRABS, asked him to read the brochures, but explained why she was recommending Copaxone. She had hard data from clinical trials regarding men at a similar age with similar presentation. No cahoots with big pharma.... He went home, we read the brochures, got on the internet and agreed with her assessment. He's happy with the decision, 15 months later, no new lesions, none enhancing. He found comfort in her knowledge of the different medications.

Also, I thought I had read that initial MS lesions occur most frequently in white matter, especially the periventricular region and that the first plaques occur less frequently in cerebellum, brainstem, and cervical spinal cord areas....but I'm sorry for implying that brainstem lesions are rare. Sadly, they're not. My bad.

I just think getting an MS dx is overwhelming enough...we pay docs for their expertise and opinions, and should expect their advice.

Good luck with the tests, Dave-

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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