I’m writing in a larger font because I have been told that sometimes the smaller fonts are hard to read.

So sorry to hear about how bad things are going for you. I wanted to let you know that I married my husband seven years ago and I knew that I was becoming his full-time caregiver before marriage. We lived together for a few months before we got married. He was diagnosed in 1986. He was kinda like you. He woke up, went to stand up, and went to the floor. He tried to sit up and couldn’t. He was blind in both eyes, couldn’t speak, and was almost paralyzed on his right side. They put him in the hospital and had decided he had had a stroke. He had to wait many months for a diagnosis. When it came though there was nothing they could do for him back then. The numbness went away, his eyesight came back, and he was able to speak again. He had to walk with a cane though. When he met me, he could only walk short distances with a cane. He now is not able to walk at all.

You had a question about Solumedrol...he would have a dose every month for or more depending on if he was having an exacerbation or not and also how bad it was. He did this for about eight years. I would call you doc and get back on the Solumedrol.

Can anyone else answer the question about Solumedrol…

Keri,

You are WAY too early in this game to be considering as aggressive a treatment option as Tysabri, or multiple doses of steroids. I'm not sure where you've been getting your information up till now, but I would strongly suggest you do MUCH more research before you make any further decisions.

Tysabri has only been on the market for a couple of years as it was pulled off (after being fast-tracked) because 3 people came down with a usually fatal disease, called PML. They suspect that this very rare disease was caused by the patient's weakened immune system (they were all either on a combination therapy, or previously used strong immunosuppressants), but to this day the manufacturer has many warnings about the unknown long-term effects of this medication.

There are still reports filtering in every few months about people having rebound reactions (if pulled off the drug after just a few infusions) and the potential risk for skin cancer from this drug. In fact, someone on another board recently advised us that their neuro was aware of 4 new PML cases, yet to be announced. THIS IS JUST HEARSAY (not yet confirmed!!!), but it was the rumor-mill that revealed the last 3 cases too (just shortly after the manufacture's execs sold off boatloads of shares, THEN kindly announced the potential problem).

There are some neuro's out there that are gung-ho on Tysabri, but this treatment option is still meant to be reserved for those people who have an inadequate response, or who are unable to tolerate other approved therapies.

I have had MS 17 yrs, and before there was access to any "disease modifying drugs" (DMDs). Since there has been though, it has always been recommended that a person try one drug for a period of approximately one year, before they consider a decision on whether the medication is working for them, and/or if the side-effects outweigh the personal benefits. You are only ONE MONTH into this, and you haven't even tried the interferons (the "big guns"), so I am not sure how you could already come to the conclusion that Copaxone is not the drug for you.

I understand your neuro discussing the potential problems with the interferons (due to your history of depression), BUT that does not mean that Betaseron, Rebif or Avonex will necessarily effect you this way. There are probably 100's of thousands of people around the world that had no other choices until recently, and many of them did just fine on the interferons (even with a history of depression).

All of the drugs we have available to us only work on SOME people. Even though we have averages of "30%" or "68%" efficacy, there are some that are perhap seeing a 100% reduction in relapses, there are others that the the drugs do nothing what-so-ever for. Copaxone might seem to be the drug for one person, and Tysabri seems to work for the next.

In fact, due to the unpredictability and relapsing remitting nature of this disease, it is very hard to know if any drug is helping any one of us reduce relapses at all. Additionally, even though we might be seeing a reduction in relapses, there is still no direct correlation between this reduction and a reduction in disease progression. Hence, the disease process/disability may do EXACTLY what it was going to do, with or without these drugs.

I will answer your steroids question on the other thread . . .

I am not telling you this to scare you, or to put down Tysabri or any other drug. I have had MS and have been on these forums a LONG time, and I probably still don't have all the facts right. However, my point is that you are obviously getting very biased input from your neuro/specialist, so I feel we would be doing you a disservice if we did not advise you to do your own personal research before you jump on any bandwagon so early in the game.

Cherie

keri, welcome to the poker game. I too am on Copaxone, and its quite stressful to just be sick, let alone be sick and alone. There are support groups in almost every corner of every state. Going to one of those might help you unlock some local resources.

I think because this is so new, and you are currently MID flare and really feel like crap on a stick, that makes it even harder to deal with. hopefully with some time, treatment, education, and support, you will begin to adjust to having this monster in your life.

I too was sort of blindsided. while i had some sx through the years, I would have NEVER guessed MS..NEVER!

I pray you find some strength to pull yourself through the next few weeks as your body begins to heal, and adjust. Please EDUCATE yourself. Check out Tysabri, Check out steriods. Check out better diets, and learn about stress control. yeah! funny, be told you have a major life altering disease, and then be told to practice stress control. ha! As you begin to come to the other side of this flare, you WILL start to feel better! you will start to adjust, and you WILL see that many of us have walked a mile or two in your shoes and are here and at the ready should you need to vent.

please go to the NAtional MS society web page. Ask for the newly diagnosed package. its AMAZING! and so are they. Read from credible sources. dont read every MS web site you see. Some will just want to sell you funny juice, or crazy pills, or bee stings. Even after some learned that i have ANAPHALAXIS to bee stings, they still wanted me to try their products! what nut jobs! Try to go to places that are even tempered and will show you BOTH sides of the fence.

Good luck to you, and please let us know how you are doing...you are NOT alone, not now, not ever. we are all right here!

Keri,

You were on my mind last night and this morning. Something you said earlier triggered my thoughts.

You said something about your friends not knowing about the potty chair and all that.

Listen, your TRUE friends will not leave you, they will help you through this.

Your not true buddies will leave, but Keri, they aren't the people you need in your life right now.

Maybe you ought to clue all your friends in....it is a very personal decision to do so and I realize that.

Living by yourself, you need a couple of people you can rely on to do things for you as needed.

Keep hanging out here, we will help you through this.

And if you are surprised by the amount each person is writing, each of us is caring for your well being, and you yourself wrote a lot!

hang in there! We are here to help you!

I agree with what Cherie said. Do a lot more research before jumping into the Tysabri pond.

I was only diagnosed in January of 2007. (had been having issues, numbness, optic neuritis, fatigue, the occasional potty problems...since April of 2006) I didnt start my treatment (Copaxone) until September of 2007. (the injection nurse didnt contact me for about 2 months after I got my Rx)

I'm giving the C a year or two to work before I start worrying about trying a different med. I might be having a few weird transitory symptoms of numbness and vision wacky-ness right now, but I do sort of feel better since I started taking the shots. Nothing has really changed, except that I dont feel like I'm getting any new and bizzare symptoms since I started taking the C. I just have weird old symptoms cropping up occasionally. (hopefully that means my lesions are healing or at least not getting any worse)

I was panicked after getting my diagnosis. I was thinking that I was going to die or something. I even wrote up letters to my parents and my boyfriend for them to read after I died (note to self, delete those)

It'll take a little time to calm down now that you've got the diagnosis. I've finally calmed down a bit, I still panic at the drop of a hat, but I feel better now a year or so later than I did last year at this time. Weird as it sounds, I feel happier than I ever did before I got MS (that would be because of my boyfriend, not because of the MS)

If your MS symptoms are causing you a lot of difficulty, making your day-to-day activities extremely difficult, you can ask your doctor if another dose of steroids is warranted. It's the beginning of learning what symptoms you need to worry about, and the ones you can ignore (or deal with)

Look at Cherie's post again, she gave a lot of good advice (she's really good at giving advice)

Welcome, Keri..

Hate is such a strong word.....and, yet, in some instances, not strong enough.

Hang in there and don't take too much IVSM. It doesn't work as well with the 2nd or 3rd + times, for most people.

Good luck with the Tysabri. I hope it works for you. Just be sure to weigh all your options and the benefits & risks before jumpin in.

Hi RedPenguins!

Here is my experience with the dmd's in the past 9 months:

On Copaxone for 8 weeks. I went to see my neuro after the 8th week and dropped my pants and showed him my legs. Then I showed him my arms. I had to inject into already compromised injection sites so I had a large infected, blister on my arm. That was the end of C for me.

On Avonex for 9 weeks. I was so ill from the Avonex my husband even suggested I see the doctor to be taken off of it. I never got over the flu-like symptoms at all. My right eye was nearly swollen shut. My retinologist could find no physical reason for this anomaly nor could my neurologist. I was very depressed and didn't even realize it until I stopped the interferon. My eye went back to normal after a week off of the Avonex.

These are just my experiences. If I had followed the suggested waiting period of a year or two to allow my body to adjust to these medications, I shudder to think what may have happened to me.

If your quality of life is greatly diminished then switching medications is completely justified. I just started Tysabri today after deliberating for quite some time. I'm fully aware of the problems and benefits related to the drug. I am willing to take the risks involved.

Are you having problems with Copaxone or is that you don't like the daily injections? It is ultimately your decision not your neuro's about what you decide to do. Everyone has their own reasons for not wanting to use a certain med. If it's affecting your quality of life, do what you need to do for yourself. Take some time to think it all through.

I hope you're having a better day today

((((Keri)))))

Just wanted to give a quick HELLO

Yeah...MS hAS all of us, unfortunately....it's the unpredictability of it that is the true downer. DMD's are fine and dandy, BUT...they don't fix the damage that already exists.

But like some pp stated earlier....it's a better dx for me than the brain tumor I thought I might of had after 'looking' at my mri cd while in between doctors visits ......

Just wanted to say welcome!

There are a few key points with your experience though joellelee.

1. You had serious adverse reactions
2. You tried different two drugs
3. You deliberated and became fully aware of the problems and benefits related to Tysabri, before making the decision.

If you can't take the other drugs, and you are fully informed about Tysabri, it sounds like an informed and good course of action for you.

That is not the case with Keri though.

Cherie

Keri sounds like she has done her homework.

Keri reports her neuro spoke with her about Tysabri before she started on Copaxone.

It's between Keri and her neuro, but ultimately, it is Keri who decides what treatment she chooses.

My advice is and always has been to research the choices and make an informed decision about what treatment YOU can live with.

While we all need some time to process the information we receive about MS, the learning curve is not as steep for some and more for others.

While some here might think Tysabri just popped out of the closet, it was in research and development for twenty years. It has proven science behind it. It's not the answer to everyone's MS, but it is another tool in the treatment box for all of us.

Whatever you choose Keri, we are here to support you. Take time to research ALL your options, including the alternative therapies. There are many here that do just fine on them too.

Your MS didn't just happen overnight and it's not going to hurt if you take more time to learn and understand the risks and benefits of each therapy.

I hope you are feeling better today!