Hi all
-
-
August 22, 2007 at 2:49 am
So, not entirely sure if this is the best place for this, so you know, please move it at will.
Well, then. Hi all, I’m Dana. I’m a 21 year old college student who’s had cidp since I was 15 but wasn’t diagnosed until I was 20. (Due to factors like, “she’s too young to have any major neuro-autoimmune illness” and “there’s no disease that hurts the same way on both sides. either one is worse or your making it up”.) I was eventually told I had one of those unnamed, untreatable neurological diseases that could never be helped, that we could only treat the symptoms as they came. Not a pretty picture for an 18 year old. To make matters worse, my research driven neurologist “treated” all of his undiagnosable, autonomic nervous system dysfunctional patients with a course of rediculously high levels of coQ10 and vitamin b12, and not much else.
By the time I was diagnosed I couldn’t walk up stairs properly, walk long distances, had terrible vertigo, and was beginnig to have trouble getting my mouth to properly form words.
Thankfully, last May I got diagnosed (and have since gained an additional six other autoimmune diagnosises and a team of doctors), got on IVIG, and got on the road to get better – I hope!
I found about you all from Jerimy (who I happened upon in another autoimmune illness disscussion board), and he has enthusastically encouraged (re: goaded) me into checking this all out. I look forward to meeting you all and learning a lot!
-
August 22, 2007 at 7:38 am
Dana,
Welcome to the the family. Your story sounds very familiar. Hopefully the IVig will set you on the course to recovery. 🙂 -
August 22, 2007 at 7:38 am
Dana
That’s our Jeremy!!! Thankfully that’s how I found myself here and the rest is history as they say. Welcome to the site, I couldn’t be happier to have been led here. It’s like a port in a storm, the people are warm and welcoming, it really helps to have someone who can understand what you’re going through. I think you’ll be happy to have been led here also. -
August 22, 2007 at 10:50 am
Welcome, Dana. Many of us had similar experiences with doctors who didn’t know what to do with us. I have a variant that progresses very slowly over years. It started with some numbness in my toes in 2001 while in the Peace Corps in Thailand. Today my feet are totally numb, my hands are getting worse, I can only walk with a rollator and need both hands on the handrail to walk up and down steps. It took four years until I was finally diagnosed correctly. A few years ago when I lived in Chiangmai, Thailand, a Thai neurologist had me walk down the waiting area to watch me. He diagnosed me with Parkinson’s. 😮 I insisted on a brain MRI which showed nothing. Another one got a little closer and at least diagnosed me with peripheral neuropathy and prescribed vit B12 which did nothing. Now I am finally getting IVIG which does help some.
It would be nice if you would say a little more about yourself in your profile, where you live, what you are majoring in etc.
Take care
-
August 22, 2007 at 11:28 am
Welcome to the forums.
I am the mother of a 3 year old with CIDP. Jerimy is a good friend and has helped me out many times.
I am so glad you finally was dx. We know by experience, it is horrible not to have the correct dx.
Lori
-
August 22, 2007 at 1:39 pm
Hi Dana,
Welcome, you will be learning alot about CIDP, please feel free to ask questions. I myself was diagnosed with CIDP in 1996 and sometimes feel like a doctor.
Lynette -
August 22, 2007 at 2:28 pm
Welcome Dana! I can’t imagine trying to go through college with CIDP! Where are you in school? Do they understand your illness? Are you able to attend classes? Gosh college was stressful enough without having a chronic illness – keep your class load small and get plenty of rest!
Come back often and check in – this is a very supportive and informed group here so feel free to vent or seek information. 🙂
Julie
Norb – check your PMs 😎
-
August 22, 2007 at 2:29 pm
Hi Dana! I am a mexican 22 year odl girl. I have a mild case of CIDP, but CIDP still. Since i am your age, i think i can understand what your going through, welcome here. People here are very helful and nice, i hope you find answers to your questions and a good place to vent.
-
August 22, 2007 at 4:08 pm
Hi Dana, Welcome to The Family! Thats Our Jer, hes such a sweet talker!!;) Glad you took his nagging:eek: and found us. Ask as many questions as you have or just vent when you need to. Take care.
-
August 22, 2007 at 7:15 pm
Hello Dana,
Just wanted to say welcome to your family where we understand because we feel what you feel. If you’ve found a good doctor who knows what you have and knows how to treat it, you’ll start doing better, FINALLY! If you still don’t have that good doctor, let us know where you are, nearest big city, and we’ll help you find a doctor. And you did put your post in the right place! Talk to us and ask questions as long as you need to. Someones here everyday.[IMG]http://img129.imageshack.us/img129/1038/welcomegroupbearstx7.gif[/IMG]
-
August 22, 2007 at 9:34 pm
[B][I][U]Welcome Dana![/U][/I][/B] I hope you find answers to your questions here and vent as you need to. I have learned a lot from others questions. Questions I would never of thought to ask!
-
August 27, 2007 at 9:32 am
Welcome Dana! 😉
This is a great place to get answers and support for those “bad” days! We’re all here to help!
I commend you for continuing college while trying to get a diagnosis. You’re an inspiration to the rest of us! 🙂
Cathy
-
Hi all!
-
-
September 7, 2006 at 4:39 pm
I have been away for a while. My account got closed to for that reason i think. I hope you plp doing good. We have got another baby, a little baby girl thats we will call Michaela.
I cant upload the pic of my baby girl becuse of the size, dam i relleay wanted to share a pic of the cutie.
-
September 7, 2006 at 5:49 pm
Hi Giorgio
congratulations on your new baby!! Welcome to the world little angel.
If you would like, feel free to email me the picture and I can resize it for ya to share 🙂 my email address is [email]average_everyday_sane_psycho@yahoo.com[/email]
lori
-
September 7, 2006 at 8:33 pm
Ill mail you, thanks alot.
-
