23 yr. Old with recent diagnosis

[FONT=”Verdana”][SIZE=”3″]Dear JenNic,
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.
Welcome[/SIZE][/FONT]

JenNic,

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.

Donna M

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.

Good luck
Dick S

Hi Jen

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)

JenNic,

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.

Gary

Hello JenNic,

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.”

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,
Kelly