I start IVIG

[SalpalSally]

Eight years would do just fine for a start...LOL!

I'll ask the Doc here to seewhat he says.

[Sunshine]

Medicare will pay for it if the neurologist gives you the diagnosis of MS. Is there an MS neurologist at your place Sally? If not, it's time to insist on visiting an outside MS neurologist. It's worth making a stink if you respond to the IVIG.

To all:

Remember, I also have Common Variable Immune Deficiency which is insufficient antibodies. The IVIG treatment is the same as the MS IVIG treatment: infused antibodies. It is possible my MS symptoms were due to chronic underlying infection if the lungs and sinuses and that this infection is slowly clearing up with the infusion, and, therefore, the MS symptoms are improving. There is no way to know.

[Virginia]

BBS, I can buy that for now. Later on after they have cleared up you should know if the MS really is being affected.

[Lazarus]

Sally, Linda says it stopped for her in approximately eight years, but she had eight good years. If we knew it would do the same for us it would be worth a try, but we just don't know. I am already on one medicine and doubt that my Doctor would change me now, but you are not on anything and would have nothing to loose (as I see it) by just asking your Doctor to let you try it. I would not ask the Doctor where you live, I would want to see a Neurologist away from there.



I have no idea if this is the same thing. I have a neighbor who has a kidney problem and she has refused dialysis. Her Doctor sent her in for two bags of Plasma. She said it gave her more energy was what she got out of it. Linda and BBS is this the same as IVIg, or do you think it would just be more like a regular blood transfusion?

Not the same as blood plasma exactly. IVIG is pooled from plasma from 1,000 donors. BBS and I were in complicated medical situations when IVIG was prescribed. It is not a first line med for MS and it does not help everyone who tries it. But, when it works it is wonderful.

Good idea that Virginia gave Sally about going to a neurologist to discuss this med.

Linda

[agate]

One problem with nursing homes I've had anything to do with is that they insist on their doctors as the ones in charge of your care. I have the impression that that has happened to you, Sally, or no?

Their doctors are usually not specialists, and there's usually no neurologist on the scene. I think they could be persuaded to FIND one if you need one to confirm your MS dx, or maybe there's already some paperwork among your belongings--something signed by a neuro saying you have MS.

Something more recent might be wanted, and in that case you'll need to find a neuro. I believe they have ways of transporting people to medical appointments not on the premises, don't they?

This is where one of those advocates the MS Society is going to have would be very handy--that person could find out just what is needed and find ways of hooking you up to the right people so you wouldn't have the run-around of constant calls and letters before you hit someone who knows what to do.

[Virginia]

I think Sally should get someone (her daughter if possible) to take her off the premises to ask about IVIg. I would not bother with the contract Doctors that they call in to homes like that. The possibility of getting a Neurologist who knows about and understands MS is not very good. If her daughter can not do this then an advocate would be great.

From the contact I have had with getting specialist in places like that, it is highly unlikely of getting a good one, who cares and understands the problems of MS. She needs to see one the specializes in MS away from the NH, and who does not just get called into a Nursing Home.

[SalpalSally]

I'm thinking an age limit may be in place also..?

[Sunshine]

I haven't heard that.

[agate]

Sally, here is what United Health Care says about coverage for IVIG for MS:

Only registered and activated users can see links., Click Here To Register...

I hope that link works OK.

Nothing is said about age but there are some other restrictions. You do have to have RRMS, but the doctor might be willing to say you have RRMS even if you seem to have a more progressive type just so you can have the treatment. And you do need to have failed with two of the MS drugs listed. I think you've tried a couple of them in the past?

Bear in mind that this is just one health carrier's explanation of its coverage. But United Health Care is one of the big ones and may be typical.

[Sunshine]

I have Medicsre and only failed Avonex, so maybe Medicsre is less stringent?

[agate]

Well, it also says that two of the 9 drugs listed should have been "contraindicated." So you don't have to have failed two of them--but they should have been contraindicated for you.

[Sunshine]

Tomorrow is second infusion.

[SuzE-Q]

I have Medicsre and only failed Avonex, so maybe Medicsre is less stringent?

But, you aren't being rx'ed it for your MS, but for your immune deficiency. That's the difference.

[Sunshine]

But, you aren't being rx'ed it for your MS, but for your immune deficiency. That's the difference.

Medicare turned it down for the immune deficiency. Says I am not sick enough. So it is being prescribed for the MS

[Lazarus]

Medicare turned it down for the immune deficiency. Says I am not sick enough. So it is being prescribed for the MS

Mine was prescribed for my MS. They wanted to give me Novantrone but could not at the time due to cancer surgery so that gave them the reason to go in another direction.