Our story up til now
AnonymousAugust 20, 2009 at 7:13 am
I’ve been monitoring this board for a few weeks now. And I feel ready to share the story of my hubby, Rob, and myself. About a year and half ago, Rob started having problems with balance, problems that showed up as he struggled to get thru yoga class. So he stopped going. Then he developed muscle pain and weakness. Our family MD sent him for an MRI, and he had a torn rotator cuff. PT helped the cuff, but Rob’s physical therapist told him, “There is something wrong with you–you are getting weaker, not stronger.” Back to our family doctor, and then a referral to a neurologist. You know the story–6 specialists later (most of them were great, one at Hershey Med Center was a reptile), no Dx.
Then…a MIRACLE. I was at my sales meeting last month, and an old friend asked after Rob. I just opened up and told her the awful truth, and…she looked me in the eyes and said, “My sister has a disease that sounds very similar.” Yep, CIDP. Next thing you know, we are emailing heavily up to our new friend in Boston, who has CIDP.
Back we went to our (now VERY familiar and VERY VERY kind) Physician’s Assistant, Chris, at our family MD’s. We printed out CIDP info and handed it to Chris. He looked at us with a perplexed gaze and said, “I’m so sorry, but I have never heard of this. Let me give you a physical in light of the symptoms listed.” The long and the short of it is, we are headed to Boston on Sept 8th to meet with our new friend’s neurologist.
We got the written info from GBS/CIDP Foundation Intl and have been reading it…boy, it sure sounds like CIDP is the culprit. We shall see. In the meantime, I am so grateful for this virtual community. I have never felt so alone and helpless in my life. I thank the universe that I have my health and an excellent job and health insurance, so that we can afford to bring in help during the day and when I travel. For all of you who struggle financially, please know that I am thinking of you and sending out prayers. I can’t imagine the stress of that added burden. God bless!
AnonymousAugust 20, 2009 at 12:00 pm
If your husband does have CIDP, assuming it is the relapsing/remitting form, you might find that with regular IVIG treatments, he might improve rapidly. If it is the progressive form, IVIG might just halt the progression & he could still improve. What he desperately needs is some kind of treatment for this illness. Keep us posted as to the actual dx after he has seen a neuro. Good luck to you both, this is not a kind illness, but he could have much worse.
AnonymousAugust 20, 2009 at 1:50 pm
I am glad you are not giving up and trying to dig to what is wrong with Rob.
Please give your friend that told you about CIDP a hug.
By sharing what is happening to us we are better able to educate not only ourselves but others as well.
Many doctors have never heard of CIDP. Every chance I get I try to explain to anyone that will listen what CIDP is. Hopefully they will share as well and it will be a more common set of words and more people will get a more accurate diagnosis much sooner!!
Rhonda from Canada
AnonymousAugust 20, 2009 at 2:03 pm
[QUOTE=Rhonda]Many doctors have never heard of CIDP. Every chance I get I try to explain to anyone that will listen what CIDP is. Hopefully they will share as well and it will be a more common set of words and more people will get a more accurate diagnosis much sooner!Rhonda from Canada[/QUOTE]
Absolutely, Rhonda! I just had my 2-yr checkup with the plastic surgeon who did my reconstruction after breast CA. He had not heard that there’s a 1 in 10 chance for breast, ovarian, lung CA patients to develop an auto-immune disease. He also was not aware of one of those diseases being GBS and/or CIDP.
He’s a very good doc in the proper field to be aware of the consequences of breast CA. If he didn’t know the connection, I can imagine regular docs … family practice, internal med, pediatrics, etc. … likely have no idea whatsoever.
Given all the other folks who have to deal with GBS and/or CIDP, it’s amazing to me that they are such hidden diseases.[/COLOR][/SIZE][/FONT][/B]
AnonymousAugust 21, 2009 at 12:53 am
Say what? you mean to say that this stupid hyper immune system of mine cant even get it together to go raid cancer growth. My mom had breast cancer where does that put my statistical probability. I think ill just go out and have a bilateral profalactic mastectomy and a historectomy on top of that. sheesh!! I read that MSers are less likely to have most cancers but more likely to have brain cancer.
sorry I didnt mean to go off the thread rhonda. keep searching and dont give up. thats what I am trying to tell myself. doctors dont care much for those who search for a possible diagnosis on the internet but sometimes thats the only way to get things done. I have seen sooo many different neurologists and have done many different kinds of tests over a period of 5 years and I think I am getting closer. I have finally found a doctor who has heard of it and is trying everything to get to a diagnosis. that means ruling out everything else first. I found him through this a suggestion from this sight. good luck.
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