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not MS but it mimics MS (CDPN)

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Posted 9/3/2008 6:17 PM (GMT 0)

 I have been diagnosed with Chronic Demyelinating PolyNeuropathy. The Doctors tell me that it  mimics MS alot and is also incurable and it effects my whole body. I now have times that I don't know where I am at home, work and a few times while driving. I was wondering if anyone knows if there are any support groups for CDPN? I was diagnosed over 2 yrs ago. Thanks-zacksmom

Posted 9/3/2008 11:53 PM (GMT 0)
Hey Zacksmom

I"m so sorry for u'r dx. I've been doing some research all afternoon and have found lots of info explaining what this is, but not any real support groups. Have u tried checking with u'r doc's office or the local hospital to see if there is a support group nearby u? I suspect this is not going to be a dx that many get and thus u may not find lots of support groups, but maybe one that is close enuf to u to justify u'r travel there? Take care and please stay and post as u'd like and make u'rself at home here. This is a great group of people who will do all they can to help and support u where needed.
Posted 9/4/2008 12:03 AM (GMT 0)

Hi Zacksmom,

I am sorry to hear about your diagnosis.  I have never heard of CDPN (I am going to google this!).  I can't help you with a support group but I can invite you to come here and post as often as you like.  I am thinking that if CDPN is an MS mimic then maybe we share similar symptoms??  You may find some solace venting here.  We have great folks here that support one another and you are more than welcome to chat and post with us.  Good luck with everything and I hope to hear from you again.

Posted 9/4/2008 5:52 PM (GMT 0)

Thank you both for replying. My drs have told me that what i have is effecting not only my legs but my arms and my brain. Now where i work at(wally world) they are trying to get rid of me. Now when i really need the insurance the most. Should i check out disability? the insurance co.s have told me they won't carry me privately. what do i do?

Posted 9/4/2008 6:52 PM (GMT 0)
Hey Zacksmom

DON"T let go of u'r ins now. I can tell u from my own experience that once there is that shadow ...even undiagnosed ms...ins is hard to get. U will pay extroidinary high prices and not get very good coverage. If u can maintain u'r job and ins then i would. Applying for disability may be a good idea, but i'm not sure what the requirements are for how long u've been UNemployed or if u can apply while still working. Check into that thoroughly and then if u can, i'd proceed. Take care friend. I'm so sorry for all of this.
Posted 9/6/2008 6:44 PM (GMT 0)

yeah  thank you rhonda, i appreciate you telling me that because i am beginning to feel panicie(i can't spell)about all the expenses that are beginning to come in.   zacksmom

Posted 9/6/2008 7:58 PM (GMT 0)

Hey Zacksmom,

I was researching your disease.  I definitely think it warrants a consideration into applying for disability.  We have had a few people successfully navigate the nightmare that is applying for disability.  If at all possible, you are going to want to look into getting an attorney.  I know that that can be expensive but it may pay off in being quailified the first time around.  It can be a long drawn out process.  I wish you the very best of luck.  Continue to let us know how you are doing.

Posted 9/7/2008 5:41 PM (GMT 0)

My husband and i have talked about doing just that(lawyer). I just hate to put so much  on my husband(he retired last June). We went to court this past Feb. and won custody of our 3yr. gr.daughter. That cost over $3,000.00 and before that our daughter's divorce cost us $2,000.00. Now this. We are only every day people with a morgage and etc. I am sorry for going on and on and complaining to you. Thanks Gretchen for being there, zacksmom 

Posted 9/7/2008 8:17 PM (GMT 0)

I understand.  That is how most of us live.  Day to day, month to month.  I know it can be so hard.  I was wincing as I suggested the lawyer to you as I know the cost.  I know it would be a hardship for us right now.  Never worry about complaining that is why we are here, so please feel free to "go on and on."

Hang in there and keep us posted.

Posted 9/8/2008 11:48 PM (GMT 0)

Thank you Gretchen, I appreciate that.  I was wondering, my daughter-in-law said today that she heard that BlueCross had open enrollment through this month. Have you heard it? Thanks, zacksmom

Posted 9/9/2008 12:05 AM (GMT 0)

Gretchen, I am so dense-I am just now checking the Forum Rules. I hope I didn't make a BIG mistake with my last message. I typed an insurance company's name. Is that considered advertizing? I sincerely hope not. I did't mean to break any rules. Please let me know, zacksmom

Posted 9/9/2008 12:06 AM (GMT 0)

Hi Zacksmom,

I came across your post during a search that I did a few days ago "polyneuropathy mimics ms".  My current neuro is referring me to a Neurologist that specializes in Periperal Neuropathy.  My NCV confirmed sensory motor polyneuropathy.  My current neuro says that we have ruled out all the easy stuff now we need to look into neuropathy that "mimics MS".  I have done a lot of research I feel that I could be looking at CIDP as well. 

lynxgal

Posted 9/9/2008 12:42 AM (GMT 0)

Hey Zacksmom,

No worries, you are not breaking any rules.  By advertizing we mean, "Hey I am selling the cure for everything!!! Call me and I will hook you up."

Lynxgal,

Welcome to the forum.  I hope you get some answers real soon.  Good luck and feel free to post here for support.

Posted 9/9/2008 2:44 AM (GMT 0)

Hi Lynxgal, i hope you will find out really soon.  Good luck and Welcome, zacksmom                   

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