Greetings from a new one…
AnonymousDecember 16, 2007 at 8:55 pm
Hi, I just discovered this place and am so glad to find people who understand CIDP. I was tentatively diagnosed but have my doubts, particularly because my symptoms — partial paralysis in both feet, calves and a little in hamstrings — are painless, and also only motor, though reflexes on my worst foot are starting to diminish.
I notice that everyone keeps talking about rest being crucial — how do you all achieve this? I’d love to hear any tactics for getting around, getting things done and still getting rest. I’m a single mom of a 6-year-old boy, and I’m self-employed–I’m still able to work fine, except for schedule interruptions (it’s work on the computer and my arms/hands aren’t affected), and my mother was up from Florida for the onset of this but had to return. Friends are coming over now/then to help out, but I’m wondering if I need to figure out something more consistent.
Nine days ago I got my first IVIG and seem to be only weakening — took a fall this morning and couldn’t get myself up, which was a first. How soon does this work (if it works)?? I know the doctors say 2 weeks to 2 months, but what did all of you experience the first time?
There are tons of questions the doctors can’t answer, like, does progesterone play a role in this? It seems like I’ve weakened immensely every time I’ve been in for serious testing/treatment — after spinal taps and IVIG. Why? And, I’d been taking Wellbutrin for six mos. to help me stop smoking and it inhibits an enzyme that metabolizes foreign substances like antibiotics and toxins — I had a cold / sinus infection three weeks before possible onset and took antibiotics. Does that play a role? Would enzymes help? (and can you get the right ones?) My feet have been getting red/blue and slightly swollen and tender to the touch for six weeks now, particularly if they’re cold, or I sit too long with them down. Is this something others experience (and what does it mean? Is it dangerous? The dr’s don’t seem to know.) Does massage help? Swimming? Acupuncture? … Screaming? Does pork have anything to do with this, as mentioned? (My brother and I split a pig late last year, from a local farmer.) I tested low for choline and zinc; slightly high for white blood cells in spinal fluid — anyone else? Some internet booklet I got suggests a link to chronic infection like mycoplasmas, and that long-term antibiotics are in order. Anyone heard that?
Also, for those of you with small children, how did you talk to them about what’s going on? My son’s been a trooper, but a recent fall where I sprained my foot and needed a cast seems to have shaken him up.
Shoot. I probably should’ve just introduced myself instead of opening the too-many-questions floodgate. 🙂 So.. hello, everyone. I’m sorry all of you have had to deal with this, most for far too long. Your good attitudes are an inspiration and a real spirit-lifter.
AnonymousDecember 16, 2007 at 9:38 pm
Glad you found this site too. You sound like you have a good sense of what this condition is and like many of us have a lot of questions that are not easily answered if at all by the doctors. I think those of us who live with this understand the symptoms and daily ins and outs more than the professionals. They pretty much know how to diagnose (sometimes) and treat. But many of the seeming side affects are a mystery. Fatigue seems to be a big unlooked at issue that we find rest and conservation of energy to be key to maintaining stability. Viruses and sicknesses seem to exacerbate the condition as it takes our bodies every ounce of energy and resources to recover and defend. Some people take supplements and other dietary aids but nothing is fool proof. Every one is differant and responds differently to treatments or approaches to healing. It is important to continue to listen to your body and your instincts because ultimately you will be your best expert. I personally find that between taking an immunosuppressant, using Ankle Foot Orthodics for the drop foot, Occupational Therapy and Yoga, I am gaining more ability to adapt my life. Rest in the form of sitting when possible, prioritizing activities,and saying yes to doing some things and no to others are necessary learned tools.
Others on this forum will probably be better at addressing some of your other questions but I hope I helped somewhat. Please stay in touch and keep asking questions. Thats how we all learn more about this.
AnonymousDecember 16, 2007 at 10:04 pm
Hello lhs and welcome! I don’t have CIDP, I have GBS. You should be very honest with your Son. If he has been a trooper already it sounds like you can keep the conversation possitive and let him help when he can. Keep things possitive as far as your attitude and it will help you, but also help others. Tell people what they can do to help you. It can be just visit you once a month to do things that you are not able to do or help you catch up. Also have a list of things you could use someone to help you with weekly or biweekly. Sounds like you are able to handle the daily things pretty well, except for the [B]REST[/B]! Does your Son go to school? That is when you should take those extra hours to [B]REST[/B]! That is going to be your best [B]REST[/B]. Your job is at home so you might be able to work shorter hours a day and work 6 or 7 days a week as not to tire you out so much? Maybe on the weekend you could find a neighborhood child’s Mom or your relative that could take your Son to play while you fit in those few hours of work. Be inventive and resourceful. As far as the house work, do things as a team with your Son. The sooner you both get the dishes done then there will be time to play a game or watch some tv together. Have him read to you or teach you how to play a new game or sing a song. Do some crafts from a book or build a lego city that might take you weeks. A little bit at a time. The fatigue is the most difficult thing for me to deal with and I have come to terms with it and ask for help still 2 years after my onset. Even if it is for a neighbor to go shopping with me and then we can stop for lunch. I tried to keep things as normal as I could. I had one neighbor that I asked to call and check on me. She still does that each Monday or Tuesday and we see if we can go out together. One day we both wanted to buy wallpaper and we just went and picked out a few books to bring home. Also be active and stretch and breathing exercises can be helplful daily. Yoga or some type of Aqua therapy in a heated pool may relax you several times a week and help you with your strenght and balance. Are you doing any type of therapy? OT=Occupational or PT=Physical Therapy? Some one else will come along and answer your other questions. Nice friendly group you have found. Welcome!
December 16, 2007 at 11:08 pm
My ten yeaqr old (eleven in 2 days) has cidp. There are different forms, relapsing remmitting, and progressive. We have the relapsing remitting type. We get ivig, it helps instantly, we get better, it comes back if we don’t get treatment. The object is to get a loading dose and then continue so you do not relapse.
I am confused, are you already on a maint. schedule, or did you only get the 1 time 5 day course? Do you know if you have relapsing remmitting or progressive?
I believe the spinal tap should have elevated protein with no additional white blood cell elevation. You might want to check out what it means if there are white blood cells in the l/p.
Regarding your comment about splitting the pig, I am assuming you are referencing to the latest news from the pork plant. It seems to me the butcher you purchased the pig would be at greatest risk being that he processed the pig. It seems to have a connection to the brain removal and processing.
Are you taking any steroids? Some experience a weaking when taking certain steroids. How much ivig did you get? 2g/kg of body weight distributed over 4-5 days consecutiveley is protocol.
There are certain lymphomas that mask as cidp, try reading posts by Norb, maybe there will be some info there.
You asked how long before ivig works. Each person is different, I imagine how long you have had the symptoms may also play a role in how quickly you will see a big difference. Our experience has been a difference in stregnth with in hours. Everyone is different. Some have to take steroids with ivig, otheres, ivig with imuno suppressants. You will find a plan that works for you!
Dawn Kevies mom
AnonymousDecember 16, 2007 at 11:30 pm
You’ve all been so kind — and thank you for the wise advice and warm welcome.
To answer the ivig questions, my first dose was two days (not five) and 2 kg/lb each day. I didn’t have any proteins in my spinal fluid in at the beginning/end of Oct., and they’ve got lymphomas (and the lovely ALS, which we generally don’t utter out loud) as a differential dx, but the doctors say they really don’t think that’s it. I’m waiting results on charcot-marie / hnpp too, something I insisted on.
So some experience immediate response to ivig? I hate to keep getting this if it’s not going to be working — there’s a very good chance my insurance co. won’t be paying. I’d just signed up when my foot started flipping over.
Have a good night, all…
December 17, 2007 at 11:59 am
We had cmt as a mis dx the first time around. Did you send blood to Athena labs? when I started investigating cmt, it seemed evident that the dibilitation process would take years to get to the level Kevin was. Has your level of disability happened over a short period of time, or years?
What do you think it is? The ivig may take a couple of loading doses before maint., the addition of steroids may be necessary too. Each person is different. You did mention lymphoma as a possibility, as I mentioned, read the member list for the name Norb, there might be some info that might help you!
Dawn Kevies mom
AnonymousDecember 19, 2007 at 10:36 pm
Welcome to the group.
I was dx with cidp in Nov 2007. six weeks ago and it has been a real roller coaster of a ride.
My legs are numb from knees to feet with the feet being numb, tingling, and painful 24/7. The same is true for my arms from the elbows to the fingers.
I have a weak trunk area. and i fall very easily. i now use a walker to walk and at times need a wheel chair.
i have found a lot of info on this site with real caring people who understand.
I also find the MD’s can not give answers, it is wait and see, it may burn it self out.
I’m on my second round of ivig for five days in a row infusion. i did not get very much of a response from the first five treatments, but MD felt it was worth another shot.
I’m also on prednisone 80 mg a day and cellcept 2000 mg a day.
i truthfully have been discourage at my lack of progress and was getting very depressed until i found this forum and found out that this does take time, patientce, and faith.
hang in there and know you have found people who understand and will give you support.
AnonymousDecember 20, 2007 at 11:41 am
[QUOTE=Dawn Kevies mom]
There are certain lymphomas that mask as cidp, try reading posts by Norb, maybe there will be some info there. [/QUOTE]
Actually, a slow growing B-cell lymphoma can be the [U]underlying[/U] cause of one of several variants of CIDP, called by some PDN (paraproteinaemic demyelinating neuropathy) or MGUS (monoclonal gammopathy with unknown significance). This is a copy, a clone of one b-cell that won’t stop producing one kind of antibody which happens to attack part of the myelin. In my case the antibody is type M (IgM). With it progression is steady and very slow, over years, mainly sensory, some axonal damage, no pain, tends to occur later in life, responds poorly to IVIG, plasmapheresis or steroids. Rituxan, an engineered antibody, may bring improvement. I just finished my first round of it in November waiting for results which may take months. My feet have been 100% numb for at least 2 years, hands 80% this year, tongue started to get numb, too. I can only move around with a rollator, am supposed to get a power chair this or next week.
AnonymousDecember 22, 2007 at 6:06 pm
Dawn’s mom.. I don’t have a good gut feeling on what this is. (I wish I did.) I went off on a tangent last week about L4/L5 and structural causes, or endometrial scarring on the spine, then my hands started weakening, and so that would rule that out. Would things be spreading if it was CIDP and I’ve begun IVIG?
I’m awaiting results on hnpp/cmt from athena. Should be soon. I also bought a hormone test to get some baseline there, for what it’s worth.
blskat, thanks for the reassurances. Are steroids helping? One dr (at Univ of Mich) doesn’t want me to have any b/c the white blood cell count in spinal fluid might indicate infection; the local neuro says he doesn’t think there’s any infection, period. So they’re at an impasse. I’m totally frustrated as I get less and less mobile. My son was sick last week and I couldn’t get there fast enough with a bucket.
Norb, I was fascinated by the molecular mimicry stuff, though I probably don’t fully understand, but man, what a design flaw if that’s happening. My dr’s said lymhomas were a differential dx but that they didn’t think that was the case. But I have no idea why. My onset seemed pretty rapid. In fact I saw the dr. on a thursday over my left foot, and by monday for my first emg, my second foot was rolling. That’s why I wonder about hnpp — the weekend between those, I’d sat on my legs, painting baseboards.
I asked doctors at the start to take an MRI of my legs themselves and they just refused. Am I just asking a dumb question? I mean, won’t they be able to get some crucial information that way?
Hope you’re all doing well tonight.
AnonymousDecember 23, 2007 at 4:47 pm
[QUOTE=lhs]Norb, I was fascinated by the molecular mimicry stuff, though I probably don’t fully understand, but man, what a design flaw if that’s happening.[/QUOTE]
Lori, you must have found a post I made quite some time ago. I noticed that the graph that goes with it was not there anymore. I’ve fixed it now. Perhaps that will help you understand the process. It’s at [url]http://www.gbs-cidp.org/forums/showthread.php?t=854[/url]
As amazing as biological processes are, they are not all perfect. There are many safeguards to protect us from errors, but they don’t always work the way they should – as we all found out. For example, we have two identical strands of DNA. If I remember correctly, one of them serves as a double check when genes are being read and proteins created.
AnonymousDecember 24, 2007 at 10:44 pm
Get ahold of me if I can ever be of any help to you. I am also seen at U of M, Dr. Teener is my Neuro. I can’t recall ever responding to you before, I am the liasion for SE Michigan, if there is ever anything I can do please contact me jerimyschilz at hotmail dot com
AnonymousDecember 25, 2007 at 10:11 pm
Hi Jerimy, Thanks so much for the offer and heads-up. I’ve seen Dr. London at U-M, and he’s the one who gave me the cidp diagnosis and ordered biweekly ivig for 3 mos, then we’ll see. Just had my second dose. I’m getting it here, under the supervision of a local neuro, Dr. Robens, who used to be at U-M.
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