I’m BACK! My computer died… long time – no replace
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January 7, 2008 at 7:08 am
And I’ve been having withdrawls from the forum too… BUT I sit here with my brand new wide screen laptop, a Christmas present from several family members and I’m back in action! Of course it might take me two thousand years to figure out Windows Vista and learn to type only one key at a time on this keyboard that seems made for a toddler. BTW if you are ever given a choice re: Windows Vista or anything else, go for the anything else. Hoo Whee! So far it won’t run ANY of my old software, but hey, it looks really great and of course Microsoft wouldn’t release a buggy product so it must be me… (snarl)
Anyway, my IVIg treatment is going pretty well – we had to cut the dosage to .75g/kg every 4 weeks because my kidneys were really complaining about the higher dosage. I know this is less than half the normal dose but I’ve always been sensitive to any kind of drug so… and since we reduced the dosage my kidneys have been behaving. I see a huge difference in my energy level, weakness, pain and numbness on the third day pretty consistently. That lasts for about 10 days to 2 weeks then I start sliding downhill again. I expect we’ll be tinkering with the timing and dosage off and on but I am extremely pleased that my nurse ONLY does IVIg and has 4 other CIDP patients. He says we’re all different, have different treatments, different symptoms etc. but at least he is familiar with the disease and we get along great. ( he tolerates my sense of humor quite well too )
Not much else is new, I still have an elevated temperature that I assume is due to CIDP but my doctors keep searching for another answer and/or “underlying malignancy.” So far all we’ve found is that CT scans with contrast will make me vomit for at least 6 hours, longer it seems when they don’t find anything. My eyes are still messed up, the right one won’t focus well (thus the widescreen laptop so I can blow up web pages 😀 ) and my night vision is almost non-existant. Most of my autonomic issues have not improved much but I was surprised that my left shoulder (the one with the trapped nerve) has almost no pain for the first week after treatment. I wonder what that means… does IVIg reduce inflammation that is not related to nerve damage? seems like it – anyway, not complaining, it’s nice to be able to wash my own hair again. 🙂
What I have discovered over the last few months since I’ve been out of touch is that I have adapted pretty well to my challenges, to the point where I sometimes don’t even notice them anymore. This is ALMOST as good as a full recovery in terms of my emotional status. Other people notice my spasms, twitching and awkward movements but I rarely pay attention anymore which is a nice change from being annoyed with my spasticity. I can thank the IVIg for improving my attitude as well – I guess I had gotten to the point where I forgot what it feels like to be well, to have the energy to bend down and pick up that piece of paper off the floor instead of staring at it hoping it will levitate itself into the trashcan. I just plain adapted so well that I forgot what it was like to feel good!!! Now I need to work on getting my muscles strong enough to keep up with my energy and desire to get out of my bed.
Well I hope everyone had happy holidays. I can see I have some reading to do to catch up on all the posts I missed. That might take me awhile, as I mentioned my eyes are still messed up but I am looking forward to catching up on all the news and new people.
Julie
P.S. My frogs finally managed to figure out that breeding thing (it’s only been 4 years)… imagine my surprise to find a clump of eggs one day – it looked kinda like spit. Being the softie I am I just couldn’t commit murder and flush them but alas, they did not survive their own parents who repeatedly swam right through the middle of the clump to get air. :confused:
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January 7, 2008 at 2:39 pm
That you’ve finally found a balance with the infusions AND a nurse who knows more than a ‘few things’ about doing it right. All that can be said to that is FINALLY!
You are right about the ‘energy curve’, most people I know of have similar results. I try to plan the fun things, like clothes shopping and non-essential outings as close after infusions as I can. Those last few days before the next infusion are like being near water in the desert, yet not having the strength to get to that water.
Glad you are back! Oh, folks can’t really get computers w/o Vista these days. There is something called ‘conversion’ software that can enable your old programs work with Vista, but sometimes this can cost money and gets rich…if you know what I mean.
Do take care please! -
January 7, 2008 at 6:35 pm
Julie –
As I’m sure you already know, Emily’s eye were affected as well. She had trouble focusing at the very beginning. It took ALOT of IVIG to get her good again. If you are still having trouble with your eyes maybe you could talk to the dr about doing the IVIG more frequently. Emily’s eye only got better after having IVIG for 5 consecutive days, then 3 times a week (every other day) for 3 weeks, then 2 times a week for 1 week. After we got it better then we just had to figure out how to maintain it. Of course, her right eye was completely paralyzed at the times…so I’m sure you wouldn’t need that much.
That is, of course, if your kidney’s decide to cooperate.
I’m glad that read that you are doing better. A positive attitude goes a LONG way to getting better.
Kelly
PS, those frog eggs must’ve been something to see. Too bad the parents had other plans for them.
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January 7, 2008 at 11:45 pm
Glad you are back Julie. Thanks for your PM. Glad you are getting positive results from treatment. Keep posting.
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January 8, 2008 at 4:45 am
Hey Kelly, my right eye was paralyzed and will get that way again the week before treatment. Based on what worked for you all I may try to get the IVIg even more frequently than every 4 weeks. I guess I don’t understand what the general idea is – right now the IVIg lasts 10 days to 2 weeks, then I go downhill until I get the IVIg. Is the idea that I don’t have that “downhill” time at all? Or do I give it a little more time to see if there are overall improvements that decrease how much “downhill” time I have? I don’t want to fiddle with the dosage and schedule too much as it’s a royal pain in the rear to get changes done starting with my doctor and proceeding through the pharmacy and nursing company.
Has anyone else had trouble with their kidneys? I ran this idea by my nurse and he seemed to think it made sense… the constant demyelinating and remyelinating of my nerves causes more than the typical amount of debris for my kidneys to filter out, then when you add the IVIg there is even more debris and my kidneys work even harder. This probably wouldn’t be a problem except for the fact that I had some serious kidney infections as a child so they were already pissed off at me (pun intended.)
Finally, the IVIg seems to make my abdomen poof out (or at least this is the 3rd time we’ve noticed it). Does that happen to anyone else and does anyone have any idea what’s up with that? I’m not talking a little puffiness – I look like I’m about to have triplets… and it gets hard too but does not feel like spasms. Anyway, I’m curious – at various points in this disease I’ve had fluid in my abdomen and an enlarged liver and spleen but I haven’t made it in to get all these tests done WHEN my abdomen looks huge. I just had an ultrasound and CT scan two weeks ago after I told my doctor about the swelling abdomen, but of course it wasn’t swollen then and I haven’t heard the results of the CT but the ultrasound did not find any fluid this time around (it did last spring.) It doesn’t really bother me unless it gets big enough that I have trouble breathing, but I’d like to know if it’s just a side effect of IVIg or just another weird thing about me.
Last thing!!! My temperature drops at least one degree after IVIg (usually from 101.8 down to 100.7) so doesn’t that mean that the elevated temperature is inflammation? I can’t see why IVIg would reduce my temperature if the fever was caused by cancer… but maybe that’s just wishful thinking on my part.
Thanks for reading my long posts! My dogs are looking at me all funny because I’m sitting here talking to my computer. They keep looking around for someone else. Yesterday I played back something I’d dictated and it totally freaked them out – I was one place and my laptop was talking to them from some place else. OK, it’s sick, but I’m bored and it’s very entertaining to watch them search the room for where I’m “hidden”. 😉 Sadly the longer I talk the less recognizable my voice becomes so my sentances start coming out even more strange.
Well have a happy day ya’ll. Thanks for the advice about Vista and a conversion software – it’s certainly cheaper than buying upgrades for all my stuff. Don’t you think that’s kind of cheesy though? Make all the new computers with an operating system that isn’t compatable with old software so you have to spend even more money to get yourself back in action? Grrr… I have a love/hate relationship with Microsoft. :rolleyes:
Julie
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January 8, 2008 at 11:57 am
Hello Julie,
You have such a beautiful SPIRIT and it comes across as an uplift for all of us. What a wonderful gift that laptop was, family knew what you needed.[IMG]http://img127.imageshack.us/img127/6903/2frogsco8.gif[/IMG]
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January 8, 2008 at 5:10 pm
Julie – YOU NEED TO GET IVIG BEFORE YOUR EYE GETS BAD! (did I say that loud enough? LOL) You should have ZERO downhill time. You are supposed to get the IVIG before you start to decline.
Every single time your eye gets bad it’s harder for it to get better the next time. Emily needed IVIG 2 & 3 times a week in the beginning to get her eye under control. It ended up totaling about 200 grams a month of IVIG.
Emi’s dr had no idea how to treat her eye because there aren’t many people with that problem. I devised the treatment schedule myself after observing her. In the beginning phases I decided that she needed to get IVIG 3 days before her eye would relapse. So if your eye is relapsing 10 days after your last IVIG infusion, then you should get IVIG once a week.
I somehow knew (mother’s intuition, I guess) that if Emily’s eye could go 2 consecutive months without relapsing that it would get better & low & behold, I was right. After she had the 2 months of IVIG 2-3 times a week, she was able to go 10 days without a treatment. That ended up getting screwed up by the ‘roids…but that’s another story.
In the beginning of Emi’s illness I did a lot of research on the eye problem. It’s called ophthalmoplegia & is only seen in 3-8% of CIDP cases, I believe. Most people with ophthalmoplegia get plasma exchange instead of IVIG. My theory on that is that PE is done because it takes so much IVIG to get the eye better. Emi’s dr doesn’t do PE on children because he says it’s too dangerous & doesn’t last long enough.
I’ve read that once the eye is affected it is the precursor to all of the other CIDP symptoms. For most people it will take about 14 days after the eye goes bad for them to start having leg pains. I kind of view the eye as the window into the CIDP’s soul…corny, I know – but it works for me. I could always tell when the CIDP was gearing up because that eye would start to not move as it should. Then boom, 14 days later the leg pains would start.
Also, you should see an opthamologist who is familiar with CIDP. There is a surgery that can be done to repair that eye nerve. We’ve discussed the surgery with Emi’s eye dr & he says that most people with ophthalmoplegia will recover in 1 year, with the correct amount of meds. He said that he wouldn’t consider the surgery until Emily has gone 1 year without a relapse. Fingers crossed!…Emi’s 1 year mark of no relapse will be in February…knocking on wood too!
For the bloating feeling, we had to give Emily Gas-X pills like crazy in the beginning. The amount of IVIG that she was getting was making her feel extremely bloated & the only thing that would help was the IVIG. I agree with you that you need to have the tests done while you are having that bloating, just to make sure that everything is ok. Doing the tests after the bloating has gone away just seems useless & silly to me.
I’m not familiar with the fevers but I have read that they are often caused by the inflammation. Dells_mom, Lori, knows a lot of them because Dell has the fevers too. I think he’s been on Solumedrol & IVIG for awhile now. I think his fevers did improve for awhile but I’m not sure how he’s doing now. You might want to talk to her about what she knows about them.
I have a friend who is a computer programmer & she says that Vista is a pain in the butt & she recommended that we avoid buying it until Microsoft works out all of the kinks. My sister bought a new computer & had to get Vista. It didn’t work with her printer/copier that was very expensive, so she’s pretty bummed about that.
And finally…I think it’s pretty funny how the dogs react to the computer thing. My mom has a dog that absolutely loves Emily. We call over there at least once a day so Emily can talk to him on the phone. My mom will put her on speaker phone & Emily & the dog bark at each other. It’s really quite funny.
And if you need to know anything more about the eye problem, I’ll be more than happy to share what I’ve learned with you.
Kelly
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January 9, 2008 at 6:28 am
Well dang Kelly, you’ve given me so much to think about I’m getting a headache! You are basically saying the same thing my husband has been saying all along – there shouldn’t be any downtime – we’re going to go this full round to see if my “good times” last longer but if there is no change in the rate of decline then I think we’ll bump up the frequency. That is assuming my nurse can make the 2 hour trip out here that often…
About my eye – it gets better, it gets worse, but overall it’s better than it was a year ago. I went to the eye doctor for a new prescription for my glasses but he basically said that until it stops changing there isn’t much point. I’m going to think about going to a different opthamologist though, one with some experience like you suggest but it might be better to wait until I’ve got a few more IVIg sessions in me to see if I stabilize a little bit. You are right about the schedule though, my eye is the first thing that starts going bad, then my legs. The 10 days is the most I can go without feeling symptoms come back, yesterday my eye was already hurting me and the pupil wouldn’t contract and it’s been less than a week since the end of the IVIg. This morning my legs are twitching and spasming again but tomorrow they might not. There are other factors too, I might have picked up a cold because I’ve been sneezing my head off and getting sick like that always makes my symptoms come back. On that note, this is the third time I’ve gotten a “flu bug” after IVIg – is this possibly a delayed reaction to the IVIg? I’ve read that people get flu-like symptoms but I always assumed that they started with the treatment, not a few days later. I mean it’s kind of a bummer because I’ve got more energy and my legs aren’t as weak but I’ve got a head cold, my fever goes up and I feel crummy otherwise. ARGH!
Thanks for the tip about the Gas-X. I couldn’t imagine that the IVIg was causing that but I’m going to try your remedy and see if it works. Honestly I haven’t noticed any gas, thank goodness for small mercies, but I have no idea what goes on while I’m sleeping. And that’s enough on THAT topic!
I really appreciate all of you giving me advice, I don’t think as well as I used to before I got CIDP and I can’t do much reading on the internet to do my own research so I appreciate you all being willing to share.
Have a happy day ya’ll!
Julie
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January 9, 2008 at 4:57 pm
Julie and everyone else. Thanks for Julie’s questions and your posts.
I had a slight improvement in my hands and arms after last five day infusion of ivig in Dec. The results only last about ten days and then all symptoms started getting worse again. I’m scheduled for next three day ivig infusion next week.
After reading your posts, if i have an improvement again and it only last a short while, i’m going to ask MD if i can have the ivig more freq.
question, does anyone else get a severe headache after these infusions: -
January 9, 2008 at 5:22 pm
I don’t but it is a common complaint. Make sure you take 2 Tyelenol before the infusion and if the infusion lasts more than 4 hours go ahead and take another round. Continue with the Tyelenol until your headache is gone. Also, make sure you drink plenty of fluids as well. I think it’s a good idea to stick a Gatorade or something like that in there with your water every now and then so you don’t flush out all your electrolytes accidently. If you suspect aseptic meningitis then you should call your doctor immediately and ask him what to do. Since I’ve never had it I can’t really tell you the symptoms other than putting your head down to your chest causes excruciating pain, you are sensitive to bright lights etc. I assume you are also taking Benedryl? Well that dehydrates you as well and dehydration alone can cause a headache. Since I haven’t been having a reaction to the IVIg I went down to one Benedryl before the infusion and that helped my dehydration a great deal.
😀
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