I start IVIG

[Virginia]

So, BBS does this mean that you are getting a lesser dose like Linda got or are you still getting the real high dose that was prescribed for the immune deficiency?

[Virginia]

Sally, my Neuro is saying that I am RR even though I am SP in order for me to get Rebif. He says no one knows if it helps with SP or not and that it might, so the right Neurologist might say the same for you as far as IVIg goes.

[Sunshine]

So, BBS does this mean that you are getting a lesser dose like Linda got or are you still getting the real high dose that was prescribed for the immune deficiency?

I don't know . I will ask the nurse this morning about the dose size.My immunologist did say the dose for MS and for CVID is the same though.

[SalpalSally]

Virginia and others, I'm not likely to find a Neuro here to help me on that,
So don't now where to go? I'm going to ask though!

[Sunshine]

I had second infusion this morning with no side effects. Nurse said I get 20 grams each time. That's a lot less than Linda got. I wonder how the docs determine dose?

[Virginia]

Could it be just the difference in Doctors or could it be the difference in where they feel you are in the progression of your MS?

P.S. Keep us posted as to how you are doing after this dose.

[Sunshine]

Virginia and others, I'm not likely to find a Neuro here to help me on that,
So don't now where to go? I'm going to ask though!

Can you google MS Neurologist and then the name of your town and see what pops up. Then call, make an appointment. Perhaps don't mention you're in a NS home, just give their address if you must. Then tell the NS home director about your appointment. Tell them confidently you expect their help in figuring out how to get you there. Should be interesting. Don't back down. They do not own you. You have free will to direct your own life.
Maybe Cat has some additional ideas re how to get yourself to the doc office.

Did you like your old neuro you had when you were on your own?

[agate]

Sally, did you find a way to get a doctor to prescribe the LDN you were taking?

[Lazarus]

Could it be just the difference in Doctors or could it be the difference in where they feel you are in the progression of your MS?

P.S. Keep us posted as to how you are doing after this dose.

Hi,
I think you are right. They wanted to put me on Novantrone at the time they started the IVIG. IVIG was the second choice and we were all thrilled with the results it got. I was also doing copaxone at the same time.

[Sunshine]

I hope 20grams is enough. I see they rec 20grams for CVID.

[SalpalSally]

I can't travel unless by ambulance!!!
Unable to stand or pivot .

[Ikoiko]

Sally, ambulance transport to a doctor's appointment can be arranged. I had to do it once after surgery. I also see it all the time when I am at the hospital for my various doctors' appointments.

[agate]

Ikoiko, how nice to see you here again!

For those who may not remember, Ikoiko has been on the BrainTalk/MGH board for many years.

Sally, you could try contacting the local chapter of the National MS Society and asking for a list of local neuros who treat MS. I've done that twice here and they were very helpful about it.

I asked for one list when I first moved here, and just recently I asked again, for an update because the neuro I've been going to has moved too far away.

They sent it by e-mail but I'm pretty sure would send it to you by snail mail if you preferred.

[nuthatch]

Sally, does the facility have a handicap van or bus that is used to transport residents places? Many nursing homes do, especially large ones. The facility that my mother is in takes wheelchair bound as well as able bodied patients to doctor appointments all the time. The van is equipped with a wheelchair lift. The driver loads wheelchair patients into the van, drives to the doctors office, unloads and wheels them into the office. When she is done there, the receptionist calls and they come to pick her up.

Ambulance transport would only be necessary if the patient couldn't sit up in a wheelchair. I am unable to stand, even long enough to pivot and due to increasing arm weakness, cannot transfer on my own. I am lifted with a hoyer lift into my wheelchair, transported to the doctor's office, and examined while in my chair. Yes, it's a pain in the neck but it's not undoable!

[SalpalSally]

Sally, ambulance transport to a doctor's appointment can be arranged. I had to do it once after surgery. I also see it all the time when I am at the hospital for my various doctors' appointments.

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

And yes Nuthatch!!! Love!