Latest visit to Hopkins
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June 21, 2008 at 3:27 am
Well this monthly visit thing is actually working out pretty well. Last month we added prednisone to the IVIg days to see if that would get rid of the meningitis – and so far so good – it’s been four weeks and no headache. This is a huge change as I’ve had headaches with my treatments for the last six months. So I’ll keep taking it the last two days of my treatment and keep my fingers crossed.
Because of my high anxiety about Cellcept, being the kind of person who gets the 1% side effects, we’re going to bump my Ig dose back up to 45g again to see if that kicks my progress up a notch rather than crush my immune system.
The good news is that I am not going downhill anymore, definately maintaining, now we’re just trying to see what I can get back. And on that note, I had my first day of PT this week. I called it Physical Hilarity because I was so weak by the time I got up there I could barely do anything without collapsing. This is going to be very difficult for me to pull off, taking the bus up and doing PT twice a week, but I am DETERMINED to give it a shot as long as I am not endangering myself. So Thursday I managed to do 1 minute 45 seconds on the arm machine (looks like a bicycle but you use your arms) and five stretches with the rubber bands. How pitiful – but it’s a start. I got home and fell asleep for the next 18 hours. Wow. But basically my doctor says I’m not going to hurt myself by doing PT, that I know my body well enough to know when to stop and that because my nerves have been damaged they need frequent reminders of what they are supposed to do. He said it’s kind of like your memory – if you learn something new and then think about that thing four times in the next week you are more likely to remember it a week later than if you don’t think about it at all. He says the nerves work the same way – even if I can’t make my legs move like they should on their own the fact that someone else is doing it for me will remind my nerves what they are supposed to do. I thought that was interesting and it makes sense to me. So I’ll keep doing the PT and we’re adding pool walks to the mix too. We finally got the pool/pond up and running and several weeks of temperatures in the high 90s got it nice and warm for me – feels like bathwater. I’m not allowed to get in it on my own but when my husband gets home I’ll be doing some PT in the pool.
One other thing the doc said … I’ve been having some trouble with the last two fingers on each hand being numb/asleep/tingly and I was a little bit concerned that this might be a new attack. However it turns out it’s the way I sleep at night. He says because my nerves have been damaged they are not as resiliant as the undamaged ones and therefore are more susceptible to compression. I tend to sleep rolled up in a ball on my side with my arms crossed on my chest – basically as compressed as I can get – and no, I don’t know I’m doing it I don’t fall asleep that way. 😉 Anyway, he says you tend to do more damage at night when you sleep than when you are awake and if I am sleeping with my arms fully bent then the nerve is stretched tight across that bone, compressing the nerve, and it stays that way for hours while I’m asleep. Most people would wake up in the morning and find nothing wrong because their nerves are more flexible and bounce back – but the damaged nerves caused by our CIDP are not as resiliant and suffer from the compression more easily. The solution is to not bend my arms at night so he suggested taking some big Ace bandages and wrapping them around my elbows at night – tight enough that I notice it when I go to bend them but not tight enough to cause constriction. I tried this last night and though I woke up frequently having bent my arms despite the bandages I kept straightening them out every time I woke up and this morning my fingers are much less numb than they have been. What a miracle – and no drugs!!
So my big take-away from yesterday was that I’ve been unintentionally causing some damage because it never occured to me to be careful of compression. I haven’t crossed my legs for years because of the nerve damage in my knees but it didn’t occur to me that I could be causing compression in other places. And during the conversation with him I thought of a half dozen other things I do to compress my nerves – like when my neck is tired I tend to prop my head on my hand and that part of my face tends to go numb off and on. Anyway, I thought that was something you all might be interested in as well – maybe sometimes what we think are relapses are actually just plain old compression.
Well treatment starts today so I’ll be a zombie for the next few days – hope you all have a great weekend!
Julie (soon to be Droolie)
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June 21, 2008 at 6:21 am
Hi Julie: A couple things you have mentioned, I too have similiar experiences… One the hands going numb or tingling.. I get that I’ve noticed if sleeping in certain positions.. Also, its wierd, but get that sensation when doing an exercise whereby I lay on my stomach and lift my right leg up my left hand will fall asleep.. I don’t think that would’ve happened pre cidp/gbs…Another thing about the headaches with the ivig.. I’ve had headaches kind of hit or miss when I went in for infusions… This time I went cold turkey on the premeds benedryl/tylenol, and didn’t have any headaches to speak of for the whole time.. I don’t know if I can recommend to you or anyone else trying this…. When I was in for my infusion, I met a guy that has had cidp for 3 years, and he doesn’t pre med either….On your pt, my hats off to you.. Yes its gonna be slow at first, but what I like about how I am set up is its on computer, and pt/ot can track my progress, and once they actually caught relapse of symptoms early on before I did, so I would say its worth the deductable.. Unfortunately, I’ve only got about 18 more visits to take me thru the year.. I do the arm machine thing as well, and many other types.. What I’m liking is not so much the strength as the flexibility over time I have gotten back. I have to say that p.t. more than anything, has gotten me thru this ordeal, (besides family and others, etc), as my therapist has ms. and understands entirely how recovery and relapses work. And I think you will find an extra shoulder to “cry or vent” on when your feeling you need to… She has done wonders for me as I’m not the disco king ha ha I used to be! Tough to admit I’m breakable and not a spring chicken at 46 anymore! Sounds like you are coming along on the right track…enjoy the solstice…deanop
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June 21, 2008 at 12:43 pm
Glad you are getting so much help from your nero. I would like to know the name as we are looking for a second opinion even though that is far for us. Do I go somewhere closer or to the best. Do not know if I can find a good second opinion close to or in to Knoxville Tennessee. I have been told that it is not a place to get cidp ( from a doc when my husband had sepsis). Scary and our docs refusal to do 2 days of ivig closer that 6 weeks is very disappointing.
Need help for my husband. He has succumbed to the bedroom all day. Very tired all the time and some noticable difference in arms (hot and cold) never in arms before.
Joanf -
June 22, 2008 at 2:12 am
I’m suppose to start Cellcept in the fall. Getting a rest from any chemo meds this summer. When the methotrexate dose was pumped up my mouth was filled with sores and I couldn’t eat. I drooled with eating or the food fell out. That’s a pretty sight.
I also am extremely sensitive to any drug side effects.If one percent get it I do too. For so long the doctors didn’t understand how sensitive I was.I think me falling drunkenly off the restaurant chair after taking Ambiem CR gave the neuro the hint.
Both the neuro and I want to somehow lengthen the time between infusions.I am for adding the chemo after own research and info from this website to help slow the progression.
I sleep holding a big soft pillow against me-am a side sleeper too. I put one between my knees and another wedged into my lower back. Sometimes I can balance the side arm on my hip with a pillow to help support it.Even napping on sofa I use pillows.My hands/wrists are hurting more.Using a cane in harder.
PT just wore me flat out every time so no more. I try to walk some, clean house and do gardening. I can try “kitty lifts” if needed-the cat’s getting rather hefty.
Don’t overdo-we know what happens when we do.Stay cool. -
June 22, 2008 at 8:02 pm
Gidday Julie
Thanks for posting the info regarding your Neuro’s explaination of numbness as a result of sleeping positions. I too, often have the numbness (in my arms, hands) when I wake up and it usually takes ages to get the feeling back into them. Also, his advise about the nerves re-learning things seemed to fit with my physio classes I had a year ago. It is as if some things the nerves in my legs had forgotten and just needed reminding again – I agree with you in that it is soo tiring though! I would come home and sleep for the rest of the day after a class.
Good to hear that your CIDP is stable!
Take care
Kazza 🙂 -
June 22, 2008 at 9:32 pm
Hi Julie! It is interesting what you wrote about the numbness in your fingers. I, too, wake up every day with completely numb hands, and sometimes forearms as well. I never even think to mention it to the neuro, as it has been happening for almost 6 years. You may remember that I don’t have an official diagnosis yet, but that CIDP is what the neuro thinks, since I have demyelination and evidence of re-ennervation of both phrenic nerves causing significant respiratory issues. I also have proximal weakness/easy fatigueability, and a neuropathic pain left foot. I also get numbness between my shoulder blades with some tingling sometimes.
I am glad to hear your treatment plan is going well…..nice to hear something positive for a change! Keep up the good work! I also love the physical hilarity; have not heard that one before.
Margaret -
June 23, 2008 at 12:09 am
Julie,
I have tried PT or rehab a number of times in the past six years, but honestly never felt it did anything for me, but wear me out. I have done water aerobics twice a week for the past 3 years & find that it keeps everything “well lubricated”, as we do exercise every part of the body under water. It also wears me out, but to me it is worth it. I would try to use your pool more & not worry so much about rehab. An old member Marc M once explained to me all of the rehab I could get just doing things around my home, such as chores, & I took it to heart. Much better use of my energy.
Pam -
June 24, 2008 at 4:17 am
Oh wow, thanks for all the replies ya’ll!!! Just finished the latest round of IVIg and while the prednisone is keeping the headaches down to a low roar… I’ll be darned if I can get any sleep and I have to pee ALL THE TIME.
I’m laughing about your responses to the PT because I feel exactly the same way. I’d much rather be using what little energy I have to do things like scrape the dust out of the corners of the house, sort through and toss all the clothes I can’t wear anymore, or even weed the walkway BUT as I tell myself and my husband… we need the data. And I’m willing to entertain the theory that building up my muscles will increase my energy level though it certainly hasn’t happened in the last two years of home PT. I have to do it though… I feel like I have to at least give it a shot. So I head back up there today to see if Melanie can turn jello into muscle… I’m going to give it three weeks or six sessions, whichever comes first… before I make any decisions on whether to keep taking the bus up there or just do it here at home.
Back to the arm thing… I haven’t been doing so good with the Ace bandange thingy – I keep balling up anyway and the Ace bandages just cut off the circulation in my arms… before I have to resort to the splints does anyone have any low-tech suggestions I can try? I really need those fingers…
Joanf – I see Dr. Thien Nguyen at Johns Hopkins Neurology Institute, however there are a handful of of neurologists at Hopkins who are experts in GBS and CIDP – particularly Dr. Cornblath who is on the board of the GBS/CIDP foundation. Yes, I do think you need to go someplace with more experience. Many people on the forum receive IVIg more often than once every six weeks, just because the average half-life is about 24 days doesn’t mean it’s going to be that way for your husband. IVIg lasts exactly 15 days in me and keeping a calendar of my symptoms helped show the neuro that, once again, I’m not “typical” and thus justified the every three weeks. My suggestion is to kind of shop around, check out Vanderbilt’s website, their neurology department, see what research and specialties their doctors have there… I think Vandy is only about 4 hours from you? considerably closer than Hopkins which will be at least 8 or 9… and then there is Emory too – that’s about 5 hours? Regardless of where you go don’t let the distance stand in your way – chances are you won’t be making the trip monthly and at some point you may be able to get your “big university neuro” to do a transfer to your local neuro and serve as a consultant. This is our ultimate goal and I’m slowly getting to the point that I’m stable enough to go back to my local neuro… maybe early next year.
Limekat – don’t you hate being in that 1%? There is nothing that drives me more insane about this illness than the fact that I can’t take many of the medications he would prescribe for me to relieve symptoms. Heck I tried to take Advil for the headaches but it gave me heart palpitations. Oh well, I’ve been this way my entire life so it’s nothing new to deal with… it’s likely the reason I’ve developed such a high tolerance for pain and discomfort… and such a warped sense of humor.
Well I’m making fresh rolls to take to PT today, I’m going to try to bribe Melanie into taking it easy on me… which she won’t because I told her in the beginning not to feel sorry for me. I hope I have a little energy left when I get home to be able to do a pool walk with my husband tonight – assuming we don’t get ANOTHER thunderstorm.
On a lighter note… I woke up from a nap yesterday and heard the ravens going nuts outside… looked into the woods just in time to see “our” mama deer giving birth. She comes back every year to give birth in our woods but I’ve never actually seen the event, just the results. Life is good!!!
Julie
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June 24, 2008 at 8:59 am
Hi Julie: I hope pt goes better for you and better results come from it.. I feel I have gotten so much good from it both physically and emotionally.. It seems to me if they are wearing you out, then those pt’s don’t have a very good understanding of gbs/cidp etc.. My pt has ms., and I guess maybe she has a unique insight on rehab…. I hope it helps you and others, as it has me… deanop
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June 24, 2008 at 9:05 am
A suggestion about the arm: wrap a towel around the elbow and either tape or ace wrap that. It will be wide enough to stay at the elbow (hopefully) and also hopefully will remain pretty cool. Because of the width it will help keep you from bending your arm and yet you can move it. You could instead use two hand-towels whatever works best tp give soft resistance to bending.
At our hospital, we have quilted medical wide cloth bands for the children to keep them from bending arms to try to remove ventilator tubes or NG tubes, etc. We call them “no-no”s because it sounds kinder than restraints.
It is so cool about the deer and your frequent reminders that life is good.
WithHope -
June 24, 2008 at 9:59 am
My CIDP is no where as debilitating as yours, when I asked my Neuro for PT he told me “No”. He said that PT basically helps with range of motion only. At first I thought my Neuro was perhaps wrong, but now as I am recovering I can see that I do have the same range of motion that I had before I crashed. It is my strength from lack of muscle mass that is what is making me weak. I lost 10lbs during my crash, of which I can see and tell the majority was muscle. So I am trying to do more chores and walk more (I can walk with a cane albeit I can get wobbly and sometimes need an arm). I am tons stronger than a month ago although it will take a while before I can build up muscle mass which will hopefully get better as I recover more.
I have had the numb hands/arms during sleep for years, my previous Dr’s never believed it was real, so after a while I quit telling anyone abt it. I am glad you brought this up!
Kristin
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June 24, 2008 at 11:07 pm
Eric here!
I, Too am being referred to Hopkins next Tuesday (my neuro is sick of me;-) I’m wondering, how can I prepair myself to get the most from the consult? I, too have the numb little and ring finger, both hands.My neuro doesn’t even return my calls! The 5th IVIG didn’t do squat so they skipped the 6th pending the JH visit?
It’s 4v hours from here, I fear the doc is going to look at me, say “yep! you got it! Come back in a month!” The drive will KILL me, one. AND I need a course of treatment?
By the sounds of it, I’m far less patient than anybody on here, but, fact is, I’m a Single Parent living in a big old farmhouse in the country! If I don’t fixs, mow, whatever, itdoesn’t get done? I’ver spent a year messing w this stuff (of course not resting as I should) But ANYONE- what does one DO toget the most out of the high powervswpecialist consult? The Plan, I think is to coupole the IvIg w rretuxan or cellcept or imuran? MY Neuro is dead set against Plasma Xchng? Why? He says it’s about as effective as IvIg and worries about infection?
Meanwhile I’m on Disability and, now, my face is growing numb, also? asrms n legs growing weaker and thinner by the day? But workout proves to be disasterous in it’s aftershock. I dunno- just tell me I’m too impatient;-) I just wish I knew what to DO, to stiop this train? Speaking of Train? How would a Couple Bott;es of Night Train help? It IS an anti-Oxidant, I hear?
Peace, Y’all
Elvis Parsely
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June 25, 2008 at 2:53 am
Hey Eric alias Elvis the Parsley,
My suggestion on how to prepare is this:LOTS OF PAPER!!!!! Make copies of every lab test, every EMG, every note from your doctor and organize them by date. If you are really ambitious you can copy all your lab results into a chart, of course if your lab tests all come out normal this could be a moot point and useless exercise. Then I would also try your best to compile a timeline of symptoms… when they started, when they started getting worse, what has been tried, how whatever treatment worked (if it did) and how quickly your symptoms came back. Make a list of your symptoms divided into “totally messes up my life” versus “an inconvenience I can put up with” (or whatever category you choose) and don’t be shy about listing your symptoms. Write down everything that happens to you on your worst possible days and how it impacts your life – like “my hands are numb so I can’t prepare a proper dinner for my kids.” etc.
I’m sorry you have to make that drive yourself. Is there anyway you could get someone to drive you? Can you at least spend the night up there so you don’t have to drive 4 hours twice in one day? Ugh, I dread that drive for you.
I wish there was something I could do to help, if you lived closer to me I’d say bring your kids and come hang out by the pool for a little relaxation.Well the PT yesterday went so fantastic I almost fainted. The difference between pre and post treatment stunned my therapist. Last week I could do less than two minutes on only two exercises, yesterday I stumbled my way through an entire hour. Woo Hoo! The bus, on the other hand, isn’t going to be as convenient as they led me to believe. She was supposed to come at 10 but showed up at 8:40, couldn’t come back so I had to rush to get ready with a bus load of people waiting in my driveway. Then she could not come back and get me from PT until 12:30 so I had to sit outside and wait for 2.5 hours. And that’s the schedule they can offer me so if I can “afford” to spend 4 hours twice a week for PT then it will work out. However, being exposed to the sunlight for 4 hours yesterday set off the meningitis so now my head hurts again. 🙁 and round and round we go – the merry-go-round just keeps on spinning. Sigh.
Well that’s it for now, the glare is getting to me. Hope you all are doing OK, I’ll let you know if I make it to PT tomorrow – today is going to be another dark day with the curtains pulled.
Take care, be happy
Julie
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June 25, 2008 at 9:56 pm
Well, I gave the Doc my Chrononlogy in an intro letter4 to get the appt! I filled out his questionaire and have the labtests, EMG, LP, MRI, PDQ whatever other alphabet faxed to him and, also, with me?
I plan to write out a barrage of questions I’ve come up w through my own research. And, I don’t know what all else.
My strength is still OK (for a normal person, I’m a Fullback!) but my endurance is non existant! Plus the atrophe in my arms., legs, back (Butt?) is noticable. But, I walk, I drive, yet. and still try and do more than I should. No “Wifey” to pick up my slack.
I’m droving up, Monday, staying overr w my lil sistr (says she;s 15 minutes from JH) she’s dropping me there, my apt is Tuesday at 9. My son is on call to drive me up, but would want to come back Tuesday, I’m not sure I’m up for that?
Pool w the kids would be cool, a friend, from here, has asked that we meet for lunch or something ( No, nothing improper, just fellow travellers on this twisted ride;-)
We’ll see, but good luck w PT, I gotta get w soeone, down here, that can reign me inh to go it gradually, I tried as toned down form of my old routine and twistede myself pretty good (due to “muscle imbalance?”
No real Docsd in the Hills, least when i comes to this. MY neuro seems to think the IvIg is THE cure, but 5 treatments and no change has us both wiondering?
Peace to You,
God Bless,
Eric -
June 26, 2008 at 2:39 am
Eric,
Just an FYI – it took ten days straight of IVIg for me to make a turn around at my worst. Five days and I was still going downhill… they were talking plasmapheresis… move to bigger hospital etc. They agreed to try five more days of IVIg and somewhere around the 7th day things started turning around. However, unfortunately some people just don’t respond to IVIg and so they try other things. There are different ways to go about treating this and it all depends on your body and how it responds. For me IVIg is the best option despite the headaches, nausea etc. It may be that you respond better to an immune suppressant like Cellcept or Prednisone, or maybe your body will heal better if you wipe your system periodically with Plasmapheresis. Or a combination of things. IVIg is not the only solution out there… for some people it works great, for others it’s just really expensive liquids.I’m glad you’re making it to Hopkins… and are able to spend the night. If your appointment is at 9 you might not be finished until 11 or so – my first appointment at Hopkins took 2 hours – and that’s assuming they take you on time. All that being said your son could probably drive you home on Tuesday if you didn’t have to do any of the driving and could rest on the way back. Leaving Baltimore Tuesday at noon won’t be as bad as our usual Friday at 5pm so the traffic shouldn’t have you sitting too long. Since you have a Tuesday appointment I assume you are going to the main campus of Hopkins as the Bay View Campus only has neurology appointments on Friday afternoons (my luck.) There are some really nice places to eat down there and the main campus isn’t far from the inner harbor. If you do decide to stay another night, or are just looking for a nice place to eat, that’s where I’d go.
As for the strength vs. endurance thing – this has been my biggest problem now too. I was in great shape (for an old woman) before I got sick with CIDP, lifted weights, race-walked 3 miles a day etc. etc. so I’m used to working hard to build up strength. Now I know I have some strength back but it lasts only a few minutes. I was AMAZED at the difference in how much I could do at PT post-treatment though, more than ten times the amount I was able to do pre-treatment last week. LOVE THAT Ig STUFF!!! Since this is the thing really holding me back from getting things done around the house it’s the thing I bring up to the doctor the most often. And he tells me that it’s COMMON in CIDP patients… easily fatigueability, lack of endurance and stamina, even when they get their muscle strength back. This is the reason he wants to put me on Provigil… some little fake energy so I can last longer and potentially build up muscle strength while artificially HIGH on amphetamine derivatives. Sorry, I’m not in favor of taking these kinds of drugs but I promised I’d try it once and if it didn’t give me a heart attack I’d consider it longer term.
OK, life is good, but unfortunately not for the poor dove family that has been hanging out here… Yesterday our neighborhood peregrine falcons nailed two of them in my front yard. I woke up from a nap to such screeching I thought maybe someone had lit a bird on fire or something. It was a sad day for me, I’d been more or less taming the doves and they would get quite close to me to eat. But the falcons have to eat too and it’s pretty cool that we’ve had this pair in our woods for so many years. Sigh. The front yard was eerily quiet for the rest of the day… I hope the birds haven’t been scared off forever.
Happy Thursday ya’ll, take it easy and try to smile at least once today. 😀
Julie
P.S. Eric, don’t forget to TAKE everything you mailed with you just in case the doctor doesn’t have the relevant paperwork with him and also so that you have a copy you can be looking at as well.
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July 9, 2008 at 9:56 pm
I WAS VERY IMPRESSED! LIKE A MACHINE, CHECK-IN, CONSULT,EXAM, TEST, TEST TEST, OUTBTHE DOOR! AND PLENTY OF PARKING.
ACTUALLY, THIS DR DAVID CORNBLATH, ON THE GBS-CIDP BOARD, WAS VERY EXPERT INTHIS CRUD. EXAMINED ME AD STATED THAT, SINCE THE IVIG HAD NO POSITIVE EVECCTS IN SEVERAL TREATMENTS IT SHOULD BE DISCONTINUED IN FAVOR OF CELLCEPT, WEANING OFF THE PRENDISIONE AND THAT I’M NOT TOO FAR GONE AND WILL FEEL RESULTS IN AS LITTLE AS A MONTH (OR PLAN “C”)
SO, A LITTLE LIGHT IN A DREARY WORLD, PERHAPS? PLEASE EXCUSE THE CAPS- HANDS ARE NOT GOOD, RIGHT NOW (ONE LESS BUTTON TO PUSH;-)
I’VE READ THE WARNINGS ON CELLCEPT, ANYBODY HAVE HORROR STORIES? I’M A HALF-TIME SINGLE PARENT, OTHERWISE ALONE IN THE BOONDOCKS, AND, STILL, DETERMINED TO DO A “cOUPLE THINGS” ON MY “lISTS” EACH DAY. 3 ACRES TO MOW, BIG OLE FARMHOUSE, ETC- IF I GET DAINTING SPELLS OR SOMETHING, THE BUZZARDS MIGHT GET ME, LOL.
ANYWAY, JUST A NOTE, IF’N YER NEAR BALTIMORE, THAT OPERATION IS FIRST RATE.ANYONE EVER LINK THIS CIDP W CHEMICAL EXPOSURE- NAMELY SOLVELTS LIKE METHANOL? JUST CURIOUS.
PEACE, Y’ALL,
ERIC
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July 10, 2008 at 7:07 am
Eric, I’m so glad you had a good experience at Hopkins. I’ve been impressed too, they really seem to know what they are doing. I hope the Cellcept works out for you, though I have no experience with it myself. No idea about the methanol either – I’ve been exposed to lots of chemicals in my life but there are so many possibilities for causes I really just quit looking.
Good luck and don’t forget to come back and let us know how you are doing.
Julie
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July 15, 2008 at 5:17 pm
Hi Julie,
Great news that things are on the turn around for you!
I believe what your doctor has told you about the last two fingers of each hand has some value to it. I sleep the same way with my arms bent as far as they go. The outer two finger of both hands on to a lesser extent the others. It is very difficult to change you sleeping position. What I do is when I wake or roll over, fall back asleep reset you arms everything so they are straight. Do it every time you wake up and eventually and hopefully you’ll get more straight arm time than bent arm time. It takes weeks and months, but the hands feel better overall throughout the day.
Also take your time with the rehab. It may take you alot of visits but don’t get discouraged. I did rehab from June 07 right through June 08, three times a week and at home and have only increased toe raises by 5 or 6 reps. Progress may be slow and sometimes you’ll feel like your going backwards, but with hard work and help from above, We all know that you’ll build it back up.
My CIDP has somewhat become indolent. But for a while there I was very weak and was wiped out after 20 minutes of activity. Now that your treatment plan has it turned around. you will get better. Good luck and thanks for the doctors name at JH. they are sending me the info package.
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July 19, 2008 at 5:53 am
Had my monthly visit yesterday – and once again I was given a thumbs up!!! I’m definately getting better but still have that ferris wheel up and down cycle every 21 days. I typically get one really good day (last Thursday) and then I slowly start going downhill until day 15 when I rapidly go downhill. It’s annoying but we’re getting closer to evening out the peaks and valleys.
To help with this he once again recommended the Provigil, now that we’ve got the pharmacy all straightened out I’ll likely start it sometime this weekend. I’m not sure if I will stick to the 200mg four times a day plan, I typically only need about a quarter of the dosage of normal people, I’ll just have to wait and see how it effects me.
I’m getting AFOs for both legs, I’ve been “walking” around more and while my thighs can handle the exercise I get foot (feet) drop in a few minutes so here come the props! The pool has been excellent for the walking around – some days I can do only 5 minutes but other times I am walking around chasing the dogs in the pool for half an hour or more. Fortunately it’s a small pool so I’m never far from the sides – and being small it got warm this year and stays pretty comfortable. It’s great because I can’t fall down in there… the only challenge is getting me back up the steps again. My poor husband has to haul up my dead weight as I’m usually way to shakey to help by then. :p
This latest round of IVIg was full strength at 45g for three days and the headache and kidney pain started the night of the first day. So we’ve upped the prednisone again so that I’ll be taking 20mg all three days – however, I might end up playing with this a bit, I may split the first pill and take 10mg the day before treatment, 10g the first day, then 20mg the second two days. Prednisone has some icky side effects for me – it’s such a toss up, no prednisone and I suffer from IVIg side effects for 5-10 days, too much prednisone and I don’t sleep for days and it makes my kidneys hurt worse.
By next month’s visit I expect to walk in there on my own without bouncing off walls. 😀
Julie
P.S. I should update this thing with my arms and sleeping at night: none of the props worked to keep me from bending them, the towels worked the best but would slide off my arms as I tossed and turned. What did end up working was just waking myself up at night and straightening them out. Ever since high school I’ve never had to use an alarm clock – if I need to get up at a certain time I just tell myself when I go to sleep what time I want to get up and I usually wake up 15 minutes before I need to. Knowing I could do that I reasoned I could tell myself to wake up when my arms were numb and so far it’s working pretty well. I wake up three or four times a night, straighten my arms out and go back to sleep. It’s getting to the point where I don’t really even wake up anymore and that’s the whole idea behind this behavioral modification. 😀
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July 19, 2008 at 9:24 pm
Julie-I am cheering you and wishing you all the best.:) Emma
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July 20, 2008 at 12:47 am
Julie,
You are so amazing! Being able to mentally adjust yourself. Thats pretty powerful stuff. I wonder if you could just tell your brain not to get irritated by the IVIG? If only it were that easy, huh? I have been meaning to ask you, why are they continuing the IVIG if it causes you so much trouble with the menengitis? Is it because it does help the CIDP? And what is it about the other treatments that have you concerned? I hope you don’t mind me asking. I am glad to hear the therapy is helping and that you have the pool.(and your husband to get you out of it:)). Hang in and keep us posted.
Linda -
July 20, 2008 at 7:56 am
Thanks Emma!
Linda,
Yes, the IVIg is working really well for me and of all the options we have for treatment this one is the best for me. It seems like we’re getting the headaches under control so I’m sticking with IVIg for now. I’ve got too much drug sensitivity to play around with steroids and immune suppressants and plasmapheresis isn’t really a good option either with weak kidneys. I keep getting better despite the headaches and now that they are down to only four days it is a huge relief!!!Have a great day ya’ll!
Julie
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