I had my first neuro appt. today - confirmed MS

[shellos8]

I met with my neurologist for the first time today and he confirmed MS. He showed me my MRI pictures and there are about 15 lesions on my brain. That, along with my other symptoms and the fact that I had a similar event (although much less bothersome and no lesions seen on MRI) he is confident this is MS.

He did a physical exam and checked my eyes and found my left optic nerve is showing signs of damage or whatever. He's ordering an VEP test and another MRI w/contrast for my spine.

He also wanted to put me on Betaseron and Provigil. I called my insurance co. after I got back to work and they will not pay for Betaseron yet. It's considered a step-up drug so I have to try Rebif or Avonex first. So I'm waiting to hear back from my doctor on which one he wants to put me on. I guess I'll have to do some research on those too.

Other than that he told me to avoid physical exertion and heat.

He was very nice and I felt very comfortable with him. I'm anxious to get on some meds to see if they can help me. In the meantime, I'll be doing more and more research and trying to stay positive.

[mjan]

HUGS for you and all you are going through..how does it feel to hear MS is for sure now?

Why not Copaxone ? Just wondering..

Let it sink it..know that you will go through alot of searching and emotions..share with us, ASK for what you need and make sure to take good care of YOU!!

Warmly, Jan

[shellos8]

HUGS for you and all you are going through..how does it feel to hear MS is for sure now?

Why not Copaxone ? Just wondering..

Let it sink it..know that you will go through alot of searching and emotions..share with us, ASK for what you need and make sure to take good care of YOU!!

Warmly, Jan

Jan, I was already pretty much resigned to it being MS but still....kinda hit me like a ton of bricks when I saw the MRI photos. It was a very humbling feeling to SEE pictures of my own brain in a diseased state. I felt helpless.

My insurance co. is the one who said I needed to try Rebif of Avonex, but that is only because my doctor prescribed Betaseron. Do you have some thoughts for me on why I should maybe talk to my doctor and my insurance co. about Copaxone?

Thank you for your support

[Alicious]

Oh, man. It's good to have answers, but all the same, I am so sorry to hear you have MS.

Betaseron, Avonex, and Rebif have roughly the same efficacy and are all interferons (same type of med), so do your research, of course, but don't stress too much about not being able to go on Betaseron. (I'm curious why not Copaxone, too!)

As for the heat part, not all of us MSers have issues with heat and exercise. Definitely pay attention to your body and avoid it if you need to, but it may not be an issue at all. (Some nerve damage symptoms increase when you are overheated. It's not causing damage, and when you cool down you'll go back to "normal." Google Uhthoff's for more info. )

[Tawanda]

He showed me my MRI pictures and there are about 15 lesions on my brain.

My doctor didn't even show me my MRI until I asked to see it about a year later or so. He stuck my brain up on his light board thingy and then started circling each lesion with a grease pencil until I finally told him ENOUGH!

In all actuality, he could have shown me one or a million and it wouldn't have changed the fact that I feel like ****. I'm so sorry for you, but unlike your doctor, I would say MOVE MORE, not less. He sounds kind of old school.

I think treating yourself like a fragile china doll might be the natural initial reaction to being diagnosed with M.S., but don't give into it. BE STRONG!! During the last 7 years since I've been diagnosed, I've had my share of pity parties, but the key is to not let them go on for too long. The first year, by far, was my rockiest, but I can honestly say that it has gotten much easier for me, and hopefully it will for you, too. This website has helped me a lot although I will be deleting it from my favorites the day the cure is found!

Good luck my friend, if you need to "talk" to a veteran outside of this forum, my e-mail address is in my profile.

[0485c10]

Betserons Patent expired this year and the first "biosimiar" generic med was realeased for it this year called

Extevia

http://www.nationalmssociety.org/abo...nts/index.aspx

perhaps that is why its a step up drug? the biosimilar drug has to be used first? both are an interferon 1b.

Rebif & avonex are both interferon 1 a. i'd go with rebif if i had a choice. rebif is 3x a week subcuatanous shot equal in strength to betaseron & there is more interferon 1a in one of the 3x a week rebif shot then there is in the single weekly avonnex intermuscular(long needle) shot.

i like betaseron so that's what i would chose first, but after that i would choose rebif. thats pretty easy to decide.

[GEM]

actually, exercise is important for people with MS. The trick is not to do so much that you become overheated, if you have heat reactions. Bicycling and walking are good for you.

[shellos8]

actually, exercise is important for people with MS. The trick is not to do so much that you become overheated, if you have heat reactions. Bicycling and walking are good for you.

I would be more than willing to exercise if I could. I'm soooo fatigued right now that I'm lucky to make it thru the day sitting at a desk. I'm hoping this flare up doesn't last too much longer because I need to walk, and rake leaves, and do all those things we took for granted before MS. I think my doctor was basically trying to tell me that right NOW, given how I'm feeling, that I need to take it easy and not get myself overly fatigued because that is not going to help me. I'm not generally a lazy person so this is hard.

[Lendi]

Welcome to the group although I'm sorry you have a reason to join us.

Strange about your insurance co. I was under the impression that rebif, beta and copaxone were all about the same as far as working. That avonex was in the same group but a bit weaker. Anyway, I wouldn't worry about needing to choose one of the others. Many neuro just tell their patients here are the options choose one.

I'd go with lifestyle, which med might work the easiest for you.

[shellos8]

Strange about your insurance co. I was under the impression that rebif, beta and copaxone were all about the same as far as working.

When I spoke to Anthem they explained that the Betaseron is so expensive that they want patients to try one of the others first.

I'm still waiting for my doctor to call me back. All of the drugs, Rebif, Avonex, Copaxone are Tier 3 drugs which means my co-pay is $50. Plus the Provigil is also $50. I don't know how I'm supposed to afford $100 per month! I'm fortunate to have insurance, I know. But still, $100 for a single mother is a lot.

[Sir-Voor]

When I spoke to Anthem they explained that the Betaseron is so expensive that they want patients to try one of the others first.

I'm still waiting for my doctor to call me back. All of the drugs, Rebif, Avonex, Copaxone are Tier 3 drugs which means my co-pay is $50. Plus the Provigil is also $50. I don't know how I'm supposed to afford $100 per month! I'm fortunate to have insurance, I know. But still, $100 for a single mother is a lot.

Hi Shellos8,

In the high co-pay I recommend you do two things;

1. Call your insurance company and see if you can get 90day supply for the cost of 60days. Most companies offer 3 months for two co-pays.
2. Call the drug companies and see if you will qualify for one of their program that get you the drugs at a reduce price or the help you pay the co-pay.

Good luck

[uarkgrad1996]

Help with payment

If you decided to go with Copaxone, Shared Solutions has a program to cover up to $50 of your co-pay. My co-pay is $30 and they pay it. My insurance requires that I use a Caremark mail-order pharmacy for Copaxone and Caremark bills Shared Solutions directly. I never have to pay a dime. So make sure you ask about that.

[BigA]

You're getting good advice:

1) Rest for now thorugh your recovery
2) Once you're better, exercise, exercise and exercise. It's old fashioned to think you can't.
3) You may or may not be heat-sensitive. My doctor has patients who jog until they can't see, rest and start again.
4) Exercise - it's good medicine for MS and nearly every disease.
5) If you can, choose copaxone. It will be easier - don't mind the shots, the side effects from the interferons are worse.

Good luck. Don't forget to rest for now. You will feel better in time but need to rest now.

Good Luck