Possible MS with questions...

[bree2013]

Hello All,

I was experiencing some symptoms in 2011 but it wasn't until I felt an electrical shock in my foot mid 2012 that I sought medical advice. (along with numbness on right side, tingling in feet / legs, tightness in chest)

Since then I have had tons of tests and with my first MRI the neurologist thought I had disc issue and referred me to neuro surgeon. I was so relieved thinking I could deal with back surgery compared to possible MS.

Well, the neuro surgeon came in and basically asked WHY I was there. He was the one who told me it was most likely MS. Had lesion on spine and small lesion on brain. I was shocked -- going from thinking possible MS; to being relieved it wasn't; to then back to square one.

Anyhow, I made an appointment with an MS specialist and had more MRI's and additional blood tests done. Lesions on spine and additional lesion on brain.

At my last appointment he mentioned it was most likely MS and of course wanted to do LP. I just couldn't do it. I'm so afraid it's going to make sx worse. I asked if it could wait a couple months... he thought it would be OK as long as bladder / bowel issues didn't arise, and more serious issue. He did mentioned he would want me to go on BG-12.

I have since looked up BG-12 and realize it's not even available yet. The other thing I hav found out is it's probably going to be MEGA expensive. (>$30,000/YR)

Can anyone give me an idea of how much out of pocket it could cost? I do have insurance but I know it's probably not going to be 20% out of pocket. I don't know -- I've never had to get medications for me or family out of the normal thyroid, antibiotics, etc.

Obviously there's no generic -- wuldn't that be nice. I guess after patent expires, it would be up for grabs. (I don't know, I'm just guessing)

Any insight would be greatly appreciated. I have been reading posts and admire all of you dealing with this.

Thanks,

Bree

[JerryD]

I am sorry for your situation. You sound like you are trying to understand this 'MS surprise'. We all have a similar story to tell. Some more straight forward, some more convoluted.
I notice that your doctor wants to put you on BG-12. I think that drug has been used in Europe to treat psoriasis. I would do a lot of research on line about this drug.
I suggest you do all of the tests that the doctors need to give you their best dx. Good luck

[Alicious]

Most MS meds cost the around same amount. BG-12 isn't out yet, so I can't say what it will cost specifically, but it's probably around what the rest of the meds are costing, and most insurances cover those meds. (It will probably be more than $30,000 year. Avonex, Rebif, Copaxone, and Aubagio are about $3500/month.)

That being said, most of the MS meds have copayment assistance through the drug companies that can minimize what you are paying for the med. Generally, you will go through a mail order specialty pharmacy for the medication. The drug company will submit info/payment to the pharmacy that may cover most or even all of your copay, depending on how the drug company wants to handle it; they pay this at the time the drug is ordered, it's not a reimbursement. Most of these programs aren't about financial need, they just do it to get you on the med. Every drug has a different program with different amounts covered, and many also have programs available for financial need that offer more coverage for some people.

It sounds too good to be true, but really it's a win-win. If they pick up 20% of the cost, for example, they're still getting 80% of that money, instead of not making any money if you aren't on the med. Their goal is to get the limited number of people with MS onto their med, so there is competition even in this crazy expensive realm of drugs. Now, I can't guarantee how this will work with your insurance or what programs will be in place, but these programs do exist so even if you have to choose another med, chances are you can get one at a reasonable cost. My copay with Copaxone? $0. Rebif and Avonex? $45. Aubagio? $35. Deep breaths, Bree.

So, try not to worry too much about being able to afford the medications yet. Chances are there will be programs in place to help you when the time comes.

[CaroleL]

Hello and Welcome Bree!

[bree2013]

Thank you all for your responses. Yes, I will definitely do what MS doc suggests regarding testing. Another reason I wanted to wait for LP is if I could hold out a few months, then perhaps the extra time would be beneficial for indicating positive MS. Don't want to get false negative and then months later it shows positive.

I don't know -- trying to think reasonably in the midst of all this is very hard.

I am getting some comfort in reading posts from others. As they say knowledge is power -- but it can make your head spin.

Bree

[Jrasted79]

OMG Same start with me Bree still not diagnosed

My doctor took the same path sendingme to a neurosurgeon and the neurosurgeon said the same thing to me. The surgeon said I was textbook MS and made a recommendation to my doctor that I needed to be seen for MS my doctor said they were idiots and I don't have MS but he has only been my doc for a few months and never cared to look over my medical records(Ive had symptoms for over 2 years now)

So all this happened in November and I am still waiting to see a neurologist. My symptoms are gaining momentum and I am now having horrible bladder problems. I see my boyfriend for the first time in March and I am scared to death about my bladder stuff Ill be so embarrassed. Hes disabled too so I shouldn't care, that's how we met we both have cries for help on youtube.

I made a post recently but it hasn't been approved yet. If you come across it let me know if you have experienced anything similar. The only thing that seems to help me right now is feeling like im not alone and that someone else understands.

Good Luck

Joycelyn