newbie hello!!
 

Hi everyone ! I am very new to this board and boards in general, but since I am searching for support and knowledge I thought I would jump right in. I am here for my husband of 33yrs who has been through torture the last 3 years. He was just recently diagnosed with CIDP and was started on prednizone and soma, with no relief and was just told today his neuro wants to do ivig. He has been thru so much having stage 2 B-cell lymphoma in remission for just 18 months now, and then having stage 2 melenoma resulting in a 12 inch removal of tissue from his upper back and neck 3 mm deep just 11 months ago. And then just this past September had to have an amputation of his 2nd toe due to squamish cell carcinoma. I know it sounds like it just couldn't be true, but it is,and it has been a horror story for us. And now this. So if anyone has any advice, story, or comment that might just possibly help me to help him. Please at this point just an ear to listen would be all I need! But I know he needs more, and he counts on me , so I am asking for help.

Welcome to Neuro Talk Rondeej!! Not sure how to help you...just wanted to say from one caregiver to another...welcome. I'm sure someone will chime in to help or hug...we're good at hugging! :hug:

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Welcome to neurotalk.
 

Though I'm sorry for the reasons you're here, rondeej.

As of the neuropathy denizens here, I'm a little suspicious, given all that your husband has gone through, that they've diagnosed him with CIDP, inasmuch as neuropathy is a known adjunct to blood cancers, usually through cross-reactivity of monoclonal antibodies (M-proteins) that are often produced, not to mention the possiblity of toxic neuropathy from cancer treatments (did he receive any of immunosuppresive chemotherapies?). And--cancer cells themselves sometimes produce substances that cross-react with nerve, or result in antibody production that attacks nerve (it's rather complicated, but needs to be tested for).

You should come on over and post about all this--very specifically--at the neuropathy board here:

http://neurotalk.psychcentral.com/forum20.html


And, take a look through:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

http://neuromuscular.wustl.edu/nother/paraneo.htm

Hi and welcome to NT!

Being a caregiver is tough. I think my family suffers more than I do. The sense of powerlessness is driving my dear husband to despair. I wish he would join NT, but clearly he's not as smart as you. lol Seriously, you need support and I know you'll find it here.

Your husband is lucky to have you.

Bless you

Hi and welcome to neurotalk. I am really sorry that you are going through so much but you have found a very warm and comforting group of people. If you need anything just ask.

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Hi rondeej, and welcome to Neurotalk! This is such a great place with lots of friendly, helpful, and caring people.

We're so glad you found us!

Since this is an inflammatory demyelinating disease your husband has, I'm giving you a link to the MS forum. I'm going to assume that they are alike in some ways. Hope to see you there, because that's where I hang out.

http://neurotalk.psychcentral.com/forum17.html

Also, I don't remember if anyone gave you the link to the Caregiver forum.

http://neurotalk.psychcentral.com/forum56.html

Welcome
 

Hi

When it rains, it pours. You do have too much on your plate. We are here for you. :grouphug:

Thank you everyone!
 

:)Wow, I am so happy I stumbled onto this board! I think I found a place to call home. What a great welcome and it made me feel warm and surrounded by hugs, which is just what I so badly need right now as our family lives so far away. Thanks again everyone!

Dear Rondeej! This is most unnerving for you!
 

And, I don't mean that as a 'pun'.
The advice Glenntaj gave you will be useful and helpful for starters.
I too have CIDP, and it's an alarming thing to 'have' until you are diagnosed and can be treated. You are ever so lucky to GET that diagnosis in many ways as some have suffered and gotten worse for years before any doc could zero in to the real 'problem'.
Be assertive and agressive in getting treatments! Don't take no for answers and learn thru the sites Glenn has provided some alternatives that are prescribed.
I have to be brutally honest? There are many 'drugs' out there that help. Many of them come with side-effects as a price. Both long and short term. Just be aware of those effects, please. On one typical med often prescribed, I did get pseudo-hallicunations. Once off that med? No further problem. Other meds? Weight loss or gain. At times this can be a good thing? But for some a NOT so good thing.
I have to be brutally honest tho? For me? Pain meds can take the 'edge' off but not eliminate the pain. This past year I really hurt myself and was on morpheine. The pain was still there, tho muted a bit? But due to the other side effects? I simply didn't care! The best actions are to get treated ASAP and get some therapy to help re-learn how to walk and balance properly. AND go check out Mrs D's advice about Vitamin B-12 AND CALCIUM +other goodies that mite help nerves heal.
Don't be afraid to ask questions! We've all been there and understand. SOOO..:hug::hug::hug::hug:'s I believe you not only need them? But deserve them! For asking - j

welcome, i'm glad you found us.
my heart goes out to your dh and i pray for his recovery.
may i ask what CIDP is?

it's so difficult to help someone we love go thru bad things.
here's to your strength to help your dh.

we're here for support for you both.