New member with CIDP
 

Hello everyone! I've been reading through the different forums for several weeks and I thought I would finally introduce myself. I'm a 35 year old female and I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy) about 6 months ago. I've been receiving IVIG therapy once every two weeks since the diagnosis and it seems to be helping a little. I also go to physical therapy twice a week.

My symptoms are weekness in the neck, upper arms and legs. The weakness started in the arms about 4 years ago I think. I just thought I needed to workout. This went on for a couple of years and then I started limping on my right foot. That is when the weakness spread to my legs. I went to many different orthopedic doctors and spine specialists for a while until I was advised to see a neurologist.

About 18 months ago the neurologist first told me I had ALS. At the same time I found out I was pregnant with my first child. I have gone through many different emotions since then. I am glad that I am doing much better than I thought I would and the baby was also born with no complications. It has been difficult not being able to do the same things as I used to especially with a new born baby to take care of. I am still able to get around with no assistance and to take care of my baby on my own.

Unfortunately, I am starting to loose interest in things I used to enjoy and am starting to leave the house less. I thought this was a good time for me to join an online community to meet people with similiar experiences and try to take control of this now.

I am looking forward to getting started.
Amanda

Welcome!
 

I'm a pn/CIDP-er too! Four years now....
How you got thru it all and having a baby too, is beyond me! You are a far stronger person than I am!
I encourage you to read all the stickies at the beginning of this forum as it covers all sorts of issues, some about diagnosis, some about treatments, some about keeping it together and also about what research is going on...we have to keep up on that to keep up our HOPE!
CIDP and many PN's are very hard to diagnose...treatments vary as well. I'm getting my IVIG monthly and I don't know what I would do without it...It's an aspect I can't consider, you know what I mean?

As for stopping going out of the house...DO NOT DO THAT!! Got it? Go to the PT, do the exercises at home, if the therapist didn't give you any exercises and tools ASK FOR THEM...YOu have to work at it all the time to KEEP IT...even walking a bit...as much as you can is soo very good for you. Docs don't really think of this aspect as it's not in their purview, or consider it part of what they DO, even tho-only they can prescribe it. You have to go out of the home and just make contact with people...it's gotta help- my best friends at times are my grocery store clerk's [ask about them and their kids or grand-kids, and Dr's office staff] It is important to talk to folks, and Also those closest to you....they really cannot get a handle of what you are going thru... Folks here will help you with them and also living with this all.

Keep this extra :Heart: to beat -for you & with you! - j
Hug that baby for me too!

OOh, a precious new baby!!!! How divine is that!!!!!

Just wanted to welcome you and say hi, and hope you feel better too. My husband is also doing the IVIG thing at home. He says he believes it's helping him.

Kiss your little bundle of joy.:hug:

Melody

Valese72.....You have all the classic signs of depression. This is extremely common in people with PN, and of course you have all the post partum hormones to contend with also. And you've had a couple of major life changes. So hie thee to a psychiatrist and get it treated before it becomes a big black monster that eats you alive! The sooner the better. The drugs can do wonders. Don't do the "I don't want to take pills" routine, or "It's not that bad song". Pills can be your best friend with depression, and it can be worse than you can ever imagine! Best of luck with the IVIG therapy.

Glad to see you here.
 

You will find this to be a wonderful forum. They are supportive and kind people who will share information that they have learned in their vearious walks with PN. It is a very unique group of people.

I too have CIDP and was on IVIGG's for quite some time. Overall, I thought they did help me, especially in the beginning, when I was very weak. Unfortunately, I cannot get anyone to prescribe them again, but if they did, I would take them. I get tossed back and forth from Rheumie to Neurologist on this issue :)

About not doing things you used to enjoy doing and staying in the house. It is really important to find something to do that will help get your mind off of feeling bad, hurting, worrying or what have you. If you can just get it in your mind to get out of your house every possible day, even if it is just to go browsing through stores, looking at clothes or anything to refocus, I think you will find you feel better. Try to find something you can lose yourself in and hopefully where you can be around other people.

In our area, we have a Mother's Day Out through some of the various churches. On those days, moms can leave their kids and go out and enjoy themselves for a while. (Boy, they sure didn't have those when I had kids.) Wish they had...

Anyway, welcome to our forum.

Cathie

Sweetheart
 

This was a sad weekend for me,PN is hard. And a new wee one as well.
I agree with Dokota you don't want to be in that hole it's dark in there.
And like dalek sometimes the grocery store clerks are my best friends tooo.

Every year in Columbia Mo. we have kids from ages 6th grade to College kids
ride around in wheeelchairs,1 little girl told me.i will never look at a person in a wheelchair the same way again. Some of the college kids said they were going to ask if they could help those in chairs if they needed help going up hills. They were all tired,we do this every year,and they always say we never understood. You are going through alot right now,and i'm sure you are tired.Get that help now,mybe someone could take care,if your ready to let go of the little one, for a nap. I have 3 grown children and they love me,but it is hard for them. So i come here and these wonderful people help.:) Sue

Welcome
 

Welcome Amanda,

I'm Noong and another CIDP'er of far too many years.:rolleyes:
Glad to see you've found your way here.

Even though your symptoms have been around for a while, it still takes some getting used to, when you receive a diagnosis. It must be even harder for you, given the mis - diag you received.

But hey, anytime you need a giggle, I'm your gal.
Laughter is my WEAPON!

Oh and if I can run a large property in Australia, in the middle of nowhere with this wretched thing (CIDP) Just imagine what you can do!!!:D


Again Welcome


Noong

I'm pretty new too but this is such a warm community. I wished we all lived near. Anyhow congrats on being a mom. Do you have help at home? I can barely take care of me so I give you credit but I also think important to ask for help. Well just saying hi.

Thanks!
 

Thank you for the welcome and encouragement!

It's a beautiful day in New York so I plan to take the baby out for a stroll no matter how I feel. I do believe that if it wasn't for my baby I would not be as strong as I am today. She's the best physical therapy I can get.

Hi Daniella! Thank you for the congratulations.

I don't have any help unfortunately. My family lives about 2 hours away from us and my husband's family is in Scotland. It's OK though. It forces me to be more active than I probably would be.