I start IVIG

[Sunshine]

Yes but they are not by stretcher, they're by chair.
I can't pivot to a chair, anymore....bah!

And yes Nuthatch!!! Love!

How about the Hoyer lift nuthatch mentions.

[SalpalSally]

How about the Hoyer lift nuthatch mentions.

A possibility, yes. I,ll look into that, thanks all.

[Howie]

How about the Hoyer lift and a HoverounD motorized chair. It can pivot just fine! Think of the abilities you could have with a combination of those two!

[agate]

Wasn't there a question about whether the NH would allow a scooter or power chair?

[SalpalSally]

OMG I saw the Doc today and forgot to ask. I'll ask the nurse and see if she knows anything.
Can't believe I'm so dumb...duh! He probably wouldn't have known much about it anyway?

[Virginia]

Sally, I don't believe that I would ask the NH Doctor, if that is who you asked. Nursing Homes have contract Doctors, so they work for the NH more than they do for you. In most states and cases the Doctors are paid a flat fee per year by the NH to come in once a week or twice a month (whatever their contract states) and they see the patients then. But they are paid no more or no less regardless of what they might try to do for you. In other words, in my opinion, no incentive. I know a Doctor here who started contracting with two different Nursing Homes in order to prepare for his retirement. He went in a half day at each one every other week. It was very good money for him.

One of the Nursing Homes let him go the last I heard, but he still had one and I don't think he was very concerned because he said he would pick up another one. You don't know who you are going to get. I wish your DD could take you to see a good Neurologist. Maybe get some help from your step son or someone she knows.

You know your own circumstances and know what is best.

Sounds like me forgetting.

[agate]

I've heard that too, Virginia, and in fact been told something similar by some nursing homes when I was trying to get some action on behalf of neighbors of mine who found themselves in nursing homes and needed to see doctors.

Sally, I'm always forgetting really important things I meant to ask people, especially medical providers. I make lists of my questions sometimes but then I hesitate to pull out the list and look at it.

[Sunshine]

Sally, you don't "ask" the doctor. You "insist" on it. As in:

Sally: I would like your assistance in scheduling an appointment with Dr. mSNeurologist.
NH Doc: I don't think that's necessary Sally. You know there is not much we can do for the MS.
Sally: I realize that's your opinion, however, I insist on seeing the specialist.
NHDoc: it could be very hard to get you there and it could set you back in your health.
Sally: Doctor, I understand that you doubt its value, but I insist on this.

[Sunshine]

Last night I attended a dinner for my DHs charity group. It is the second time in 12 months I have gone out for a evening event. I am sure the IVIG helped me have the ability to do this. It was to support him, and my surfing buddy who was elected to be the emcee.

All of his friends and colleagues were stunned to see me out! I had to leave early before the awards part. But my surfing buddy who ran the meeting apparently, before giving the speech gave me a shout out saying she wanted to give me a shout out for coming out to support her knowing how hard it would be. So sweet!

[SalpalSally]

How nice of you BBS!

[Virginia]

BBS, glad you were able to be there and give your support.

[Sunshine]

Came home from work today, took off my shoes and the floor felt so COLD! Much colder then the last infusion. Colder than it has felt in years...so cold I looked down to be sure It wasn't covered with cold water.

YIPEEEEEEEEEE! Hoping there will continue to be other changes as well.

[jendie]

Hi,
I also did Novantrone and had a great experience with it. However, it is dangerous...and since we took it the danger has been increased. It can do heart damage. I still get the MUGA heart test every year or so to test.....too bad as i used to say it was my favorite chemo. Besides the gov't only let you do two years of it....

Good luck with your appt.

Linda, When I was on Novantrone, starting in 2003 was in a clinical trial called the Mito-Dex trial. Mitoxantrone combined Dexrazoxane a cardiac protectant. I didn't end up with negative affects to my heart, even though I had 9 infusions over 3 years, the last 2 without dex.

Maybe I should ask the specialist about rituxan, anything that could potentially slow down the MonSter since I've been off methotrexate for a year now.

The specialist I'll be seeing in three weeks is different than the one who got me on Novantrone.

[Lazarus]

Sure. Can't hurt to ask.

My neuro said that new research had emphasized that the novantrone can do heart damage even more years after you stopped taking it. More years than they originally thought. That's why Istill get tested.

Let us know what happened..

I wanted to emphasize again that the immunoglobulin gives a temporary fix. When it wore off I had all the difficulties until I got the next infusion. I am not totally sure that the rituxan is the same. Lately I am even walking better. The rituxan is at the least as helpful as the IVIg.

[Sunshine]

That is wonderful Laz! Seems like my legs are increasingly worse this past year to the point I know longer would say No to DMD if necessary.