Attachment 889

thought you could use another one.

i'm sending up prayers for alan...and for you to have a restful sleep.

bake extra of your nummy muffins. you know those nurses are going to want some. take care of yourself too melody.

Let me ask a question. How do they know if the ivig is working. How long do you take these infusions before the doctor goes "Aha, I see it's working".

Don't they have to give Alan more nerve conduction tests or some kind of tests to see if it's working. Do you think he has to have another spinal tap or something again? He didn't feel it so he's not afraid.

I'm just curious as to how a person gets better after doing the ivig thing.

I mean, does the neuropathy just go away, do you get your nerves back in your feet. Or do they just get numb and there is no pain?

I have absolutely no clue.

Thanks,

Melody

Best wishes and good luck to Alan and you.

Yep, me too, best wishes for you both, remember, that he's only as far as the phone is away from you

--response rates for IVIg vary greatly, individual to individual.

If Alan's neuropathy indeed has an autoimmune component, the antibodies in the IVIg basically attempt to "crowd out" the rogue antibodies that are attacking nerve. If there are enough of those rogues in there, and it is currently an "active" neuropathy--in other words, damage is continuing, and Alan's symptoms are not just from "past" attacks on nerves--he may notice a difference within hours to days. Most people don't report a complete cesssation of symptoms, but many notice a lessening. In some people, this may be more gradual--days to weeks. But in any case, if there is going to be a salutary effect from this therapy, I don't think it would be that long before you'd know it.

There are people who do not report benefits, or only report minimal ones, from this therapy, and such people may not have an autoimmune component to their neuropathy--or, they may have one but be in a remission phase. Many autoimmune diseases, including some neuropathies, seem to work on a "relapsing-remitting" pattern, with bursts of disease followed by periods of relative quiet. We've often referred to them as "flares". For some people, then, it seems the timing of the infusions is critical; you need to have one during a "flare" for maximum benefit.

Many people have reported that IVIg infusions have given relief, slowed the progression of, or even halted the advance of autoimmune syndromes, but like all treatments it doesn't work for everybody. I'm reasonably sure, though, that Alan will know relatively quickly if it's having an effect. And if it does, I bet it helps with the psoraisis, too.

at the precautions they are taking! I find it more than WONDERFUL that these are being taken! Many docs aren't as cautious.
I'd started my infusions in my neuro's office, one a day for five days...5 hours each day. Since the infusions were given in a part of the office that was their sleep lab, the beds were beyond good, had a choice of recliners [super comfy BTW] and I was watched like a hawk by an IV nurse who I consider a friend [even tho my doc's office is no longer giving infusions] AND a TV. The 'leftovers' from the 'reps' having lunch w/the docs wasn't bad either...that's what got me back my appetite...catered goodies? Won't find that in a hospital.. I found in the hospital, that the SAME STANDARD meal was served for breakfast and lunch in the infusion center [yep the cancer floor]...Duller than dishwater! Bring those muffins to the nurses, and you will have won their hearts! I brought stuff a few times and found that some of the stuff...which I'd anticipated for other patients...was well SNARFED UP by all the floor nurses...no crumbs! Bribery gets you into lots of good graces, especially by those who I call the 'Indians' Those who do the real work of taking care of Alan! Bribe AWAY! Don't forget there are 'shifts'?
What they are watching for during the infusions are 'reactions' BE SURE TO READ THE BAG and get the BRAND and quantity ML or MG of IVIG..Check w/your prescribing doc to see IF the doc's specified a particular brand, some brands use saline others sucrose as the mixer or liquid for delivery and each brand has properties some folks take to and others NOT. DO NOT let them change brands from infusion to infusion...That's why you have to know what the doc's prescribed.
Oh GOLLY I feel this is going to be a two parter...
The reason it's taking so long at first is that, put bluntly: A foreign substance [tho processed and almost pasteurized] is being put into your body. Just like a blood transfusion, [it IS a blood PRODUCT] or a shot...reactions can and do occur. Some can be severe tho I believe REALLY bad equals less than .02 percent of all infusions. The caution taken is a super-GOOD safety measure!
Most common s/es are headaches [like a migraine], diarhea, and flu-like aches. Rashes are less common, and that could be brand [solution] related. [WHY you need that info!] There are some IGa-z aspects in different brands that each of us are well, 'quirky' to. That's why keeping track of the brand[s] used is important should any reaction occur.
I cannot think aanything other, that by now, ALAN is going stir crazy! I know even as an outpatient, after hours 3 I wanna get MOVING! Lately tho my pre-meds make me dozey and I half sleep thru my now 2-3 hour infusion at home, then nap after the nurse leaves. Beats MY trundle back and forth, and overall it's cheaper and easier to have the 'house call'. Less hassle overall. I've one person watching ME for the duration and well, you know? You've reminded me I've got to get her her 'danish' ...gotta treat yer caretakers beyond right, ya know? Driving the 8 miles home after 3 Benedryls, well could be an andventure? One, most of us don't need?
Also, pre-meds play a role in avoiding reactions. I went from one Benedryl & one Tylenol to 3 t's +1 Bene to 1 T and 3 Benes now. I am truly OUT for the day after that much antihistimine, but only cause I got a rash which was fixed by the pre-med's change and topicals.
WOULD I STOP IT? NO Fudging way! Are the s/e's some of which are unpleasant stop me from getting it? [B]NO Fudging Way! I know of more folks w MMN who could be more articulate about the issue than I. If you want more resources than I've pm'ed you with in the past, please let me know.
I do knowin my heart that if I'd not gotten IVIG when I had and still do, that I would be in that wheelchair the one chief neuro cheese said I should be in w/my diagnosis. TOO STUBBORN! is my motto. I'm betting it's yours for ALAN.
I do know and appreciate the being apart stuff. When I've been in the hosp. 4 times since my onset, 2 for PN stuff others for other stuf, well, MY DH was a lost person so's to speak. The cat took it even worse! Scary prospects....?

HUGS and heaps of good thoughts your and Alans' way! - j

I'm joinin' the crowd with well-wishes, Mel.
Take deep breaths, keep the stress levels down..... He'll do just fine.

I got home at 7:15 p.m. The access a ride had me wait out side in the cold for 1 hour. I have a little diabetic neuropathy in the tips of my toes. I never even knew until I went to Cornell that my toe tips were numb.

Well, believe me, when you stand out in the ice cold for one hour. (And I was dressed warm), but I guess I should have put on 3 pairs of socks inside the boots?? well, my feet were KILLING ME until the acess-a-ride came and I could thaw out. I never felt this way. I'm fine now but I DON'T LIKE THE COLD, that much I know!!!! My feet became numb like I never knew could happen. As I sit and type this, they are fine. Tomorrow when I go back I'm bringing more socks for my tootsies!!!

So now let's talk about Alan. They gave him his first infusion at 4:30 in the morning. He slept through the whole thing practically. He woke up with the iv in his arm and never felt a thing. Just had a slight headache. It went away.

His neurologist popped in and said he tolerated his first infusion just fine, that they might change the timing of the infusions (just spoke to him on the phone and they are doing it at 1 a.m. till he goes home Sunday afternoon.).

I have no idea why they went from 4:30 a.m. to 1 a.m. but they should know.

I also have no idea how what the bag looks like, what it reads, what the name of the ivig meds are because I'm not there and forget asking Alan to do this. He never would. I know him. The neurologist said they are doing slow infusions and she likes it that way. 6 hour infusions. Then after he comes home, in two weeks he'll start home infusions.

I also asked her "Do you ever get a definite diagnosis of CIDP and she looked at me and said: "There really is only one way, doing a biopsy" And I said "of the Sural Nerve?" and she looked at me and said "my, you are a smart woman". I just said "no, I go on the neuropathy boards". She laughed.

I have learned much from these boards. I also know a sural nerve biopsy is no walk in the park. So thankfully Alan didn't have to do this. He got the ivig anyway. Keeping fingers crossed.

He thinks he feels a bit better. I think it's psychological but who cares. He has a tv, a phone and people coming in and out visiting other patients who are either stroke victims or have alzheimers.

Everybody loved my muffins.

So thankfully, he's doing great!!! Can't wait til he comes home. I'll muffin him and vegetable pattie him to death.

thanks for all your nice words.

Melody

Glad to read he's doing ok, he's in very good hands, don't forget to look after yourself too
take care
Brian

I'll look after me after I get this man home. All this running back and forth every day, I'll be honest. I don't know how people do this on a daily basis.

The guy with the Alzheimers (he's 89) and he's in the bed across from Alan. His little wife (she must be in her late 80's) came over to us and we started talking. She's been taking care of her husband at home for 10 years.!!!! 10 years.!!! And he has had it very bad. But now he's at the end and she can't take him home so she doesn't know what to do. She doesn't own a home and she has money in the bank. I asked her. "didn't you move the money over the past 3 years, so you can put him on medicaid and get him in a facility (everybody around where I live, if they are over a certain age, puts the houses and money in the kids's hands and then the parents can get medicaid. It's the only way you can survive if you are, let's say over the age of 80 and become quite ill). It seems that the medicare system never thought of us as we become older.

They need to build more facilities to house us because our children certainly won't (I mean some might but many won't) and when the spouse can no longer care for you, where do you wind up? I'll tell you, after hearing all these stories, I think I'll join Alan at the gym and get even healthier.

The alternatives, as we get older, are not pretty.

And Brian, I do hope you are healing nicely.

Thanks for your kind words. I am taking care of myself this morning by taking a walk around the corner to dunkin donuts for their lovely breakfast sandwich and cup of coffee. I mean, I have to treat myself once in a while, right???

Seeing Alan this afternoon. He better not be flirting with any of the nurses.

Melody