23 yr. Old with recent diagnosis
AnonymousMay 4, 2010 at 3:43 pm
Hello all, my name is Jen and I was recently diagnosed with CIDP. It was only about 2 months ago that I was diagnosed. From reading on this forum it appears I was lucky in getting diagnosed so quickly. It started back in September with just the tingling in my hands and feet and then sometime in February I noticed trouble going up and down stairs. I didn’t go to the doctor until it started getting pretty bad. I went to the Dr. and she sent me to have an MRI to rule out MS because I do have an aunt with MS. Well they found a brain cyst so then it was to the Neurosurgeon who said it was harmless. Imagine my relief! 🙂 My family has a friend who is a dr. a urologist and he had a Neurologist friend that he believed could help us figure out what was going on. This man quite possibly saved my life I feel and am so lucky to have him as a doctor. Dr. Isaac is his name. He knew what was wrong with me before I left his office of my first appointment. I came back for tests the nerve conductivity, EMG and spinal tap which all confirmed his diagnosis. My current treatment is a maintenance infusion of IVIG every 2 weeks after I had the initial load of 5 treatments with the IVIG. I guess I am here just for the support and the information that can be found on this forum. This is all fairly new to me but have worked hard trying to educate myself on this disease. My doctor is sending me to the KU Medical center in Kansas City, KS to see their Neuromuscular department because of my age. Any helpful information you guys would have is always appreciated. The only question I have for now is…what do you guys do to improve your strength? The IVIG has improved my walking greatly but I think I have hit a wall and may need to start working myself to make myself stronger. The doctor hasn’t recommended any PT yet but didn’t know if there was anything to do in the meantime. I am sorry for the length of this post and all future ones should be much shorter. Thank you for your time! 🙂
AnonymousMay 4, 2010 at 4:01 pm
you are indeed ‘lucky’ as for many of us the road to diagnoses was a long and convoluted one.
you didn’t mention wheter or not you are taking any other meds, like steroids or Neurotin, nor if you are experiencing pain?
I know it takes awhile before the nerves begin to regenerate or re-myelinate(?) so maybe that’s why your Neuro hasn’t started you on PT.
Everyone seems to experience this disease differently, but I wish you the best, and keep reading these forums, there is a wealth of information here.
AnonymousMay 4, 2010 at 4:06 pm
Actually the only med I am on is the IVIG right now. I think that is another reason the doc is sending me to KU med, he wants to make sure I don’t need to be on anything else. Currently as far as pain I’m not really experiencing any, I do have headaches frequently but that seems to be stemming from the IVIG. The only other pain I have noticed is occasional back pain that “flashes” and then goes away. This is another reason I consider myself lucky! Thank you for your response and I will definitely continue to read!
AnonymousMay 4, 2010 at 5:49 pm
I gained some strength on the initial load dose. But when they took me to the maintenance dose, I made no progress. So after three months I was put back on a load dose every three weeks. Also I slowed down on my work schedule and literally took a nap about four days per week for about four months. It was amazing that I could sleep at night, but I did. I think your body needs lots of rest during this period of time. I have only taken IVIG, have discomfort but not real pain. I am very functional, but not any where near the strength I once had. I have been on IVIG for two years now. I would say it probably took me nine months of load dose IVIG before I was back to a close approximation of normal. When I have tried to go to four week intervals, I start losing strength. I am still looking at other ways of building my strength, mostly with nuitrition. When I have tried to exercise, I am exhasted with no energy for anything else, so have elected to try to lead as normal a life as possible and use my energy that I have in that way.
I think your age will play a big part in your recovery. I wish you the best and keep us posted on anything you learn at KU medical.
AnonymousMay 7, 2010 at 9:18 pm
Congratulations on early intervention and a good neuro and a treatment regimen that seems to be working. All three of these things will work in your favor.
As to regaining strength…. There are some things you can do through muscle toning and general exercise, but the best thing is to let your body recover first, and then work back strength.
Think about it this way, The CIDP does damage to the neuromuscular connection as well as sensory connections. As the IVIG does its work and the “bad” parts of your immune system are removed, recovery will happen. The recovery means that more of the muscle connections will work. As more of them work, you will get stronger.
If you do toning exercises, like yoga, or ballet, or an easy stretching kind of cardio, then as you heal, you will be putting the healed muscle to use. A potential problem might occur if you were doing aggressive training. An aggressive regimen might strain or damage the muscle before it is really ready to function properly.
After your recovery is well along the way, you can increase your physical strain as you think you can handle it. but the big thing would be to take it easy. You have plenty of time to recover.
AnonymousMay 7, 2010 at 10:19 pm
My son Ryan is 21 yrs old and has had CIDP for a year and a half now. he to was dx right away. He went from being very active to hardly walking to a wheelchair in 4 months. He has been in a wheelchair for about a year now. he has done IVIG (it didnt work he kept getting worse while on it), plasma pheresis and prednisone (niether of these worked either).
In Feb Ryan started cytoxan (chemo) and he is out of his wheelchair and is walking with a cane. He even rode a reg bike last week.
To answer your question about exercise, Ryan has been doing physical therapy for the entire year and a half. he has suffered from muscle wasting while in the wheelchair. But Physical therapy has been great for him. we are so happy he has done it. it has helped him build up his strength and muscle. he also does stretching everyday at home and some other exercises here at home. he doesnt do anything hard core but he gets physical therapy for 2 hours twice a week. he does get plenty of breaks in between exercises. I would reccomend everyone to do physical therapy but that is just my opinion. Ryan gets really stiff if he doesnt so the PT heps with the stiffness and pain.
Rhonda (ryans mom)
AnonymousMay 13, 2010 at 1:42 pm
Thank you all for your words of support and advice. The IVIG really seems to be working for me. I hope that it continues to work and I won’t have to chase around the next treatment that would work. Luck has really been on my side I can only pray that it stays on my side. I do seem to be getting stronger all the time.
@Rhomcc-I have gone back and followed yours and Ryan’s story. It is good to hear that after having been in a wheelchair he is now up and walking. Such a liberating feeling to have after having been tied down for so long. It is especially difficult when one is so young. I hope that the Cytoxan continues to work and that he can eventually get off of that and be in remission. 🙂 What a wonderful day indeed that would be. I would love to continue to hear about his progress.
I myself am hopeful that I could one day do a stem cell transplant. Although it doesn’t work for everyone it does have very promising results. To be cured of the CIDP would be a true gift.
May 17, 2010 at 7:34 am
Welcome. I hate that you have CIDP, but glad you found the Foundation and Forum and have joined us. You are blessed that you were diagnosed so quickly and received treatments. I would urge you to press your neuro for PT. PT targets all your motor functions and nerve connections. PT has been instrumental in my recovery.
You’ll find that we here on the Forum are a close knit “family”. There’s plenty of experience and sage advice. There’s always people to rejoice and joke around with, a shoulder to lean on for strength, a listening ear (or two), and someone to cry with and who will listen to complaints with empathy and understanding.
Please keep us posted on how you are doing.
AnonymousMay 17, 2010 at 6:51 pm
I’m new on the CIDP forum. However, I’ve already read several times, and I agree, “everybody is different.’ You’ll have to find out what works for you. As was pointed out by DickS, “An aggressive regimen might strain or damage the muscle before it is really ready to function properly.”
I learned this the hard way and continue to be reminded of it when I overdo any activity. Here’s what they told me in late 2009 at Mayo Clinic, Rochester, “If you exercise too much (manifests as muscle cramps for me) then, next time, do 1/2 as much.”
AnonymousJune 16, 2010 at 1:11 pm
Update on me- I went to my neurologist yesterday and he tells me he is very optimistic about getting me stable. I asked him about Physical therapy and he said that if I am motivated to do it then he is all about it. Keep in mind while I am asking these questions his pager is going off (his partner was out of town so he was having to cover the hospital, which is why I love this doctor even when he is extremely busy he takes the time to answer each and everyone on my questions and isn’t in a rush, not only that but he is the one sending me to the University of Kansas.) The Doctor is also going to try and take me from 1 IVIG treatment every other week to 1 IVIG treatment every 3 weeks. That’s another reason I consider myself lucky from what I have read a lot of people’s IVIG takes 5-8 hours mine only takes 2 hours. They start off slow at 48 ml then increase every 15 minutes for the first hour until they reach 288 ML per min? I have about 400 ML infused not sure what that translates into for how many grams of it I am getting. I continue to see improvement though my right side is definitely stronger than my left. I look forward to going to KU and physical therapy!!! Thank you all!
AnonymousJune 17, 2010 at 10:58 am
Hi there! I’m glad you found this forum. My 8 year old daughter has CIDP. I have a few bits of advice for you.
First off, you MUST know how much IVIG you are getting. You also need to know what brand you are getting. I would suggest getting a big binder & keeping all of this info.
Each bottle of IVIG has 2 stickers on it. The stickers have the lot # & batch # printed on them. Whoever is infusing your (home care company, hospital or infusion center) will keep one copy for their records. You need to ask for the 2nd copy for your records.
You should also ask for a copy of your infusion notes. Our last home care company gave out copies but our current one does not…so you may not get them. Our home care company sends them to the neuro & when my daughter goes for her appointment with him, I ask for copies of everything the home care company has sent to him.
Also, you need to get & keep copies of any blood work or other tests you have. In the beginning of Emily’s CIDP I bought a small calendar & wrote down any aches & pains she had, when her treatments were, how she felt after them, etc. It’s actually nice to look back at that & see how far she has come.
I know it seems like a lot of work but I cannot tell you how helpful it is to have that info handy.
As far as your IVIG dosage, Emily gets 200 mls per infusion. That is 20 grams. (Her infusion takes 2 hours 45 minutes but the nurse never goes over 100 mls per hour) If you are getting 400 mls then you are getting 40 grams every 2 weeks. That would mean you are getting a total of 80 grams a month. There is a formula on how to figure out how much IVIG you should be getting. The dosage is based on weight. I can’t remember the formula but I’m sure if you search the forum you can find it.
Hope that helps,
AnonymousJune 17, 2010 at 11:05 am
Thanks for all of the advice! I actually did figure out how much and which brands it is brand Grifols (I had taken a picture of it at the hospital) and it has 20grams in the 400Ml. I looked up the info on their website. I also know that it is prepped with sorbitol. The nice thing about the Grifols brand is that unlike others which have to be mixed the bottle is already mixed and ready to go so when I get to the hospital they just send it right up. I’ll have to get a binder to start keeping all of my other info in such as labs. Again Thanks for all the advice!
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