If you have insurance your copay can be anywhere from 300 for a 3 month supply to less. I pay $80 but Shared Solutions (Teva people) pick that up. They will pick up copays of up to $50 per month. If you don't have insurance get with Shared Solutions to see what they can do for you. I know they have a patient assistance program. As for SSI it takes sometimes years to get it so get your docs on board if you can't work. MS is a tricky disease. For some it is downhill fast and for others well it is a slow progression into misery. Whatever teh case, you are one of us now like it or not and I guess the best advice I can give you is to try and get used to it. You will be frustrated because you can't do what you used to do, elated when a day comes that you feel amost normal, crappy because getting out of bed is a nightmare... Well I guess you get it. After being diagnosed for 8 years I still haven't gotten used to the idea of having it and I haven't found the "right" neuro yet but there are lots of things in the pipeline and thankfully there are the injectables for us and lots of people on this site with varying degrees of knowledge and help but know you are NOT alone and unfortunately we seem to be increasing by the numbers so they have to be out there working like Hell on something for us. At 1st I was excited that we had Montel as an advocate but he is out for 1 person and that is Montel. We have several celebreties in our midst but I guess until we get a biggy who is aggressive like Michael J. Fox we will have to be content with the nancy Davis' of the world and all of us lobbying for a "cure" My very best to you and may your case be one of the less severe ones and "enjoy" Copaxone. The trip is a real journey. I have been on it for 8 years now and am running out of shooting sites but the journey continues. May the force be with you and may you continue to function at an "almost normal" pace.

Much I want to say it might get jumbled? Oh well, hopefully you can useful out of it.

first I startrt4ed a group called US healthcare in uncertain times-you now have a pre-existing condition along with the age of over 40 that seems top be difficult in health insurance.

And in that group there are links to places to look for financial aid.

http://www.dailystrength.org/groups/us-health-care-in-uncertain-times/discussions/messages/9475072

Your doc should have forms to this kind of assistance, but your a go getter and you can find them yourself too. :)

THe other thing the patent for these meds start to end next year so there are already generics called bioidenticals ready to go out on the market for betaseron and copaxone.

http://www.dailystrength.org/c/Multiple-Sclerosis-MS/forum/In-The-News/9605868-next-6-mo-extavia-grow

http://www.dailystrength.org/c/Multiple-Sclerosis-MS/forum/In-The-News/9736893-generic-version-copaxone-out

WRT to SS, dtermines a disability status by disability _ retrainability. MS qualifys as a disabling disease, but it is not enough alone, the person has to have the disabling condition along with disabling symptomsd of the disease. Some one younger has to be very affected to overcome their retrainability. Some one older can be less affected to qualify for disability & in my my state NMS magazine a laywer wrote the after 50 SS disability is much easier to get than before 50 when a person must be more careful to state, "prove they cannot work"

What I am trying to say is that laywer wrote that 50 is the SS consioders a person with MS will stop being able to work. Like the retirement age has been set for a healthy person without disabling health issues...the person with disabling health issues is gonna have a lower retirement age called SSDI.

I will send you some stuff for applying because when a person has a path to go in they feel; more in contriol.

HI

I am going to second nnyl1 in that over 50 seems to be alot easier to get SSDI. But I will also say that as long as you are able to work, you should. It is a good thing mentally, of course as well as from an econonomkic view. If you have insurance at your job, as judyz stated, you will get drugs under their plan. If you do not, there are also programs to assist you. One of the reasons to remain employed is insurance. It is not an easy thing to wade through, I am 52, COBRA ending, and not looking at much.

I would suggest that once you have some better info, you maybe contact your HR department and see about what accomodations can be made and if you can stil do some kind of work there. I will tell you that you may have to make changes in what you do, and how you do it, and you may find yousefl in a job position you never thought of, but that is part of being flexible, which is something that you really have to be when dealing with MS.

Be sure to come back with any questions you may have, nnyl1 is a great help with much of what you are looking for. I applied for SSDI last year and was approved in a little over 4 months. Age, education, retrainability, level of disability from MS. And filling everything out right and on time. Very important. If you decide to file for SSDI, let us know and we will all give you our tips.

Best of luck as you start to deal with this...

I WENT TO AVONEX.......THEY HAVE A PROGRAM THAT ONLY COST ME $10 A MONTH......AND A LOT LESS SHOTS.

Shared Solutions is the company that has been helping me with my Copaxone. They showed me how to do it, and say they can help with expenses. They're very nice, and sometimes call out of the blue to check in on me. They even have workshops where a neurologist speaks and they feed you dinner.

Thanks Everyone,

I surely appreciate the info.

I work for myself and have Blue Cross Insurance. The medical is good, but the drug coverage isn't. I will have to get on a reduced payment plan with someone. At this point I will not consider selling my home for a few years worth of drugs.

Today I worked out in the garden for a while and mowed the place. I had to stop and rest quite a bit, but I was able to keep going. My right leg is a bit weaker, but it still works.

I'm going to a do some field work this next week at a open pit mine doing some reclamation planning next week. It will be the first field work I've done since I got gimped up.

I will meet with the P.E.'s who will sign off the work , do a day or two of mapping and then work on the design they want. This should tell me if I will be able to keep on doing what I've been doing. I live in the Salmon River Mountains, the work areas are usually steep with treacherous footing and are at 6000 to 8000 ft above sea level.

I will just take my time and see how it goes.
Perhaps slow and steady will win the race.

Sometimes I wish I'd been born rich instead of so good looking :-)

Thanks Again....

I have Bluecross and the cost is $35.00 a month of Betaseron. Yours may cover it too, they also get me a once in a lifetime 90 day supply for free to start. Check with them.

Dear Tom,
1st) I'm sorry to hear about your diagnosis and 2nd) also sorry to hear about your loss of your wife.

There are no short answers to your questions. As Judyz has pointed out, MS symptoms as well as the progression will be unique to every individual. The symptoms are related to where your lesions are located and how large they are as well. However, some people have huge lesions with few symptoms. So, you cannot really go by the MRI except by noting that more lesions are coming in, etc.

MS is unfortunately a "wait and see" type of disease. The only way to predict your outcome is to see how you do in the next 10 years. The natural history studies show that what happens in the first 10 years is generally a fairly good indicator of where the disease will lead you.

As for drugs, all the major companies have support systems for 1 year of use of their CRAB (Copaxone, Avonex, Rebif and Betaseron) drug. You may know that on Friday, June 11th, the FDA approved fingolimod for use in MS. This is the first oral compound now approved for use with MS. The Clinical trial results showed it to be better than Avonex. (And, all the CRAB drugs are essentially the same with resepct to their efficacy).

I took Copaxone for 2 years and then decided the at-site reaction was too painful to deal with anymore. My neurologist and I have decided to go to wait and see with respect to symptoms and lesions on the MRI. If I get dramatically worse, we will rethink the drugs. However, it has been 8 months now since my last Copaxone injection with no change in symptoms. Plus, I guess I am lucky for the moment as I personally believe I have "benign-MS" - a 5th form that is now in the literature more and more. It seems as if you are a very active guy with an active job and an active garden. I, too, am very active both professionally and personally and so Copaxone was definitely the right choice.

You mentioned your job duties. First, don't let ANYONE talk you into quitting your job unless you have other reasons besides MS to do so. When I was diagnosed, I had lots of self-proclaimed MS experts tell me that I better quit my job and relieve the "stress." Well, I did not take any of their advice (including a few initial doctors). So far, I am fine.

However, you mentioned the high altitude and rugged working conditions. I would strongly recommend you get onto an exercise program with balance work. Exercise releases growth factors (brain derived growth factors) that are positive and necessary for tissue repair. My MS symptoms have decreased ever since I have decided to exercise every single day even it it is only for 10 minutes. You should also add in balance exercises every single day into your routine. Do it while making or drinking the morning coffee.

The simplest routine to do now without a balance board, bosu ball, or whatever would be to simply work on ankle strength and standing on one foot. Ankle, knee and hip strength can be helped by just standing at the counter and using one foot lift up on your toes and then come back down. (Put your hands on the counter to balance yourself) - work up to 3 sets of 10 on each side. Balance would be worked on by moving away from the counter and just simply stand on one foot for as long as you can.

Hope this is helpful.

So sorry for both of yor losses. I too am a widow and was diagnosed with MS about a year after my husband passed away.

May I suggest looking into a clinical trial? Being that you have not been on any medicine at this point, you would be perfect for a trial. I for example am on the Fingolimod trial where I take a pill once a day. They cover all of my tests and medicine.

You can go to www.clinicaltrials.gov for more information.

Best of luck!

Sue

re Insurance:

Most insurance covers injectables under the "Major Medical" portion, not the Prescription plan -- so coverage and co-pays tend to be much better.

Same is true for chemo drugs -- many cancer patients stay on infusions, even if oral drugs are available, because insurance covers far more of the cost of injectables.

Likely same will be true for Oral MS drugs...

So check with Blue Cross for your coverage details!

Also re:insurance. When I was dxd, I had Humana, which said that Rebif was not on their list of approved drugs. I called MSLifelines, the helpline for Rebif, and they spoke with Humana, and there is was, approved. So I paid $40 a month at that time. I now have BCBS, and I am on Rebif which comes from the specialty pharmacy shipping house, and I pay $50 per month. Some require a three month order, but that was actually cheaper, before they switched it was $80 for three months. But either way, affordable. If BCBS gives you any trouble, call the helpline and they will be able to get it worked out.

So sorry to hear of your diagnosis, and like you we learn new things everyday...better informed results in better decisions! Ive just learned from biker julie on your thread that fingolimod has been approved? Novartis in Switzerland claimed last month that they were due to take out the drug pending FDA approval end 2010. Please can anyone tell me if they did get approval now? and how much their drug will cost per month? Good luck to you and God bless.

In that link I gave you about MS financial support 0 there is also a link to getting a free "cooling vest" is inciome is within a range---if income is not within a range you might want to do a search to find out where you can geyt one. Your job sounds like you may be out in the sun and the heat does not work will with MS symptoms!

I have never used one, I stay in a/c mostly. But I looked at thenm when newly diagnosed and my life was more normal and I did go outside in heat more.

http://www.heatreliefdepot.com/catalog/

http://msassociation.org/programs/cooling/

http://msassociation.org/

http://coolvest.com/

http://www.bodycooler.com/cooling-multiple-sclerosis-products.htm

http://www.polarsoftice.com/bodycoolingsystems.html

http://www.polarsoftice.com/koolmax.html

http://www.steelevest.com/

I don't place a lot of trust in my memory-tI use book marks a lot as you can see.

Are you under a group plan with BCBS or a private plan?

I was without insurance when diagnosed but I consoled myself that if I had private insurance they would have just jacked my rates up the following year after I was diagnosed with MS.

hey tom...

lots of good information here.
may i tell you about some of my experience?
tried a couple ms drugs. found one that made me feel better but couldn't afford further treatments.
after re-reviewing ms symptoms recently (dx'd april 2008) found it amazing that i have had and do have almost every symptom listed. some come and go. some worse than others.
there are many moments i get scared. is it going to worsen? can i really deal with this?
how bad is it going to get?
well, after 2 years adapting to countless lifestlye changes, the emotional and physical pain from those changes were far greater than the ms pain. i was paying too much attention to the ms.
in a round about way i'm trying to say that the answers will come. good or bad.
some cards will be dealt for you. and you will learn to work with those whether you agree or even understand them.
bottom line is, this is a new chapter in your life.
if you are fortunate to take time to reflect, you will understand that we cannot "fix" everything anymore. but we can choose to work with resources within our reach. we will also learn to ask for help. alot of help.
we learn to accept questions that can never be answered.
as you experience your syptoms and life changes, please keep a journal.
cognitive skills can rear up and you'll forget alot of important stuff.
not everyone here has every symptom or has had every symptom. the variables are endless.
just stay here with us until you get your feet on the ground.
and don't let fear and worry take away your life.
these drugs you are desperatly seeking are not a cure. you will have plenty of time to figure things out.
hope i wasn't wrong...hearing just a tiny bit of desperation in your writing.
if i overread or overstepped please accept my apologies.
maybe it can help another.

peace,
katie