Laughing here!

It IS # 24!!! I went back and checked before I posted that post just to make sure!

It's not a race, it's how we feel! I am so glad that it helped and that you are feeling better!

I can't tell if I am feeling effects of not having it yet. Too much other garbage going on, but I am sleeping 11-12 hours a day and dragging butt when I am up. No provigil since the op, so my body will be reset to minimal dose again! It'll save me $$ for a few months! :p

I have bad news tonight, and in a very down mood.

I did test positive for NABs for Tysabri, so no more for me.

I had more lesions after a year on Avonex. No new lesions after a year on Rebif, but I was always itchy and tired, so the switch to Ty.

Now Ty is out. My neuro wants to put me on Copaxone. My DH is really struggling with all of this and thinks my neuro is an idiot. He doesn't like him and was quite frustrated that once again I am changing meds.

There is another neuro in town, and I could try to switch to him, but I don't think my DH thinks that is a good idea. He's afraid if I switch because of his comments today, and then I don't care for the new neuro, then I'll blame him. My DH has thought I should have been on C all along, but says it could just be his bias against the neuro.

I'm sad and frustrated. Tired also from spending a weekend on planes going from Idaho to San Antonio quickly for meetings. All in all, not a good combo. I think I'll just head to bed and deal with it all tomorrow!

Hi 4boysmom,

I am so so sorry to hear about the antibodies. :(

Is it possible that you might have transient antibodies, wait 3 months and test again? Or is the neuro convinced the new lesions you have are because the Ty. isn't working? Again, that just really sucks. :mad:

More important, what do you actually think about your neuro? Are you personally happy with your care? If you are then I would stay. But if you are not happy or ambivalent you can always try consulting with the second neuro. If you don't like the second neuro then go back to the first one if need be-- you do not have to tell the first one that you are "trying out" someone else. I would just go to your current neuro's office and just say you want copies of all your medical records, just for your own files. Then you can bring those along with you to a new doctor.

Anyhow, don't forget. All is not lost. There will be some pills on the horizon soon. :hug: :hug: :hug:

I don't know how I feel, and that is part of the problem. The concerns my DH has with the neuro are legitimate. The neuro told us both 3 weeks ago, that if the antibody test came back positive that it may be transient ones, and we'd look at that possibility when the results came back.

Then when we went to the appt yesterday, he said flat out that since I'd been on Ty for almost a year, that it wouldn't be transient, that only happens in the first 3-6 months. He always has to be told my drug history, he can't remember and it is faster for me to tell him that for him to go back through his notes. Maybe most neuros don't remember you from visit to visit, or that you are on one of his special drugs, Ty!

His nurse is awesome! I would really miss her because she does remember you and keep up with what is going on. The neuro is involved in a study for another drug, and maybe now his focus is changed.

Some of the problem is that my DH thinks MS can be wrapped up in a neat little box, always handled in a certain way. He thinks it is terrible that every year I get MRI results, and my meds change! He knows someone at work that has been on C for 5-6 years, has had a few flairs, is more disabled than me, and seems happy with his med. But of course this guy hasn't had an MRI in 8 years!

I told him, he could have 50 lesions, and he could have no more lesions. He wanted the neuro to tell him that if I was on this drug it was keeping me walking, it was keeping me from getting "that" lesion, or "this" one. I tried to explain to him that the drugs and the disease doesn't work that way, it is always a "crap" shoot. (Having played craps, I understand that term now!)

It just made for a bad night that I didn't need. Now I have a UTI this morning to deal with, feel like poop, am looking at going from a once a month infusion to daily shots. I know more is out there, and it will take time. I'm just not patient this morning.

I'll go do my 3 mile walking DVD and hopefully perk up. I still have work to go to, and so life goes on!

4boysmom,

I'm so sorry about the test results. :( I can relate to people not understanding about MS being complicated. I'm lucky that my DH finally does understand but only after talking to him a lot about the disease and treatment for the past six years. Other people expect me to be like "so and so" who is doing just fine on Avonex and in a physical job, etc...

Copaxone is a great medicine. I was on it for 18 months and had good MRI's etc... It has a very long track record for safety and has impressive research data showing it works.

I hope it will work fine and you'll be able to get on with life without all of this "medicine stuff" as I think of it. I went through lots while on interferons and it just seems like the starting and stopping of meds takes so much out of us.

I am just so sorry to hear this, Bren.

I am sitting here puzzling over this, trying to figure out all the angles, as I am sure you are also.

Only you can make the decision as to whether to try to continue for a few more months. You have to go through all the evidence- the MRI, the way you FEEL, whether your symptoms are returning, whether you have any adverse reactions when you have your infusions, etc.

You also have to decide whether you trust that your neuro is looking out for you and has your best interests at heart.

It's true that the antibodies may be transient, even now, but you have to add it all up and decide.

I also did Copaxone before Tysabri. It didn't work for me but that does not mean it won't for you. There are other drugs in the works now too.

I understand about your husband's concerns. I had to finally tell my fiance that I had done my homework and that I was going to do what I thought was the very best for me, and that even that was no guarantee that at some point I would prevent disability, since in essence, even with treatment, so far, people with MS progress. He didn't want to hear it, but hear it he did.

It's a lot easier now, because he partners with me to keep me healthy rather than fighting me when he doesn't understand. My neuro and I explain everything to him in easy to understand terms and keep answering his questions until he is satisfied.

Take some time and just think it all over. You'll find an answer in your heart and your mind and in the end, it is your decision as to where you go from here. :hug:

Let us know how you are. WE care and we are here for you if you need to talk.

I feel my neuro did a good job of explaining why he had treated the disease the way he has, but my DH can be stubborn! And once he's made up his mind that a person doesn't know what he's talking about, there is no changing that opinion.

He did take all of the C material with him today. I told him he was responsible for getting a shot rotation figured out, and understanding totally this drug. He says he knows that I have done my due diligence, but my sense is that he doesn't believe that totally. My sense is he thinks I've just followed what my neuro has suggested.

I don't know if any of you remember that I have had reaction to my Ty infusions. The first one went fine, then #2-8 I would get the chills, a headache, feel crappy from 5 minutes after the infusion stopped until about 30-40 minutes later. I'd go home and rest, and be fine the next day. My last 2 infusions were perfect! I had the infusion, felt fine afterward, even went to dinner and ballgames after feeling great!

The neuro said that indicated to him that I had developed the antibodies a couple of months ago, and that was why my SE went away! The drug was doing nothing for/to me. That makes sense, doesn't it?

My DH will soften. He says I shouldn't switch neuros on his account, that if I like him, that is fine. I think I was just hurt that it was a blow for me to have these antibodies, and instead of getting consolation from him, it ended up in an argument about how idiotic my neuro is!

Don't get me wrong. He is a very good, loving man that does his best to meet my needs and take care of me. I think he is just extremely frustrated that I have a disease he can't fix! He actually will be better now that he is giving injections again. I think it makes the disease more real for him. He kind of lost that while I was on Ty.

Hi all, I'm getting my 9th infusion right now! The nurse infused over 45 minutes. Now he is following with saline. Isn't it supposed to be 1 hour? I think sometimes he shortens the time. Could this explain why some infusions make me feel sicker than others? When I had a month of antibiotics they had to slow the infusion to 1 hour instead of 30 minutes which made me feel WAY better. I'm feeling pretty nauseous and cruddy right now. I've had so many annoying problems with this clinic!! :mad:

All I can tell you is that the procedure is to infuse over one hour at my place. The whole thing takes about three hours start to finish from the time I walk in until the time I walk out, and they follow every step religiously. It sounds like your infusion center is in a rush to get the chair for someone else.

You need to speak up and let them know.

I'd let your neuro know too. Perhaps he/she can intervene on your behalf?

It would really suck if you had a reaction and got taken off it because of a nurse not following the protocol!

I agree with RW. In that case I would insist that they slow the infusion down and also give you plenty of saline for a good flush. It always takes an hour for the Tysabri with mine because the nurse sets it up automatically.