Hopefully my last thread… and a thank you!
AnonymousJuly 10, 2008 at 3:11 pm
Here’s the update: I went to the meanie neurologist yesterday and had my EMG/NCS. Thank God, it came back normal!
With that confirmation that I don’t currently have CIDP for the time being, I would have expected him to push conversion disorder on me. Instead, he told me that he believes I may have fibromyalgia, in spite of his own hesitance to diagnose that — he considers the patients labeled fibromyalgia a “cult” lol. I told him that I have an appointment with a rheumatologist at the beginning of next month, and I believe that he is the one who is going to have to diagnose me with fibromyalgia. For the longest time I considered it an old person’s disease (no offense to all the old people on here) so I never thought I would have it. So many of the symptoms correspond with CIDP, however, so if you’re still trying to figure out a diagnosis for yourself, consider fibromyalgia and at least look it up.
To even further support the idea that this doctor didn’t think I was nuts, he prescribed me Lyrica. It amazes me how much less of that crap you have to take a day in comparison to the Neurontin! I’ve started myself on that and am excited to see how it helps me live on a day-to-day basis.
So, with all of that said, thank you so incredibly much to all of you who helped and supported and encouraged me. I may not have the same struggle that most of you do, but it was the prompting of many of you that finally helped me to be aggressive and make sure I got the EMG done. I could not have done this last week without you! Dawn — your willingness to provide so much helpful information is an unbelievable help to anyone who would walk into this site. I don’t think I’ve ever met such an awesome group of people online.
I’ll be praying for all of you who responded to me, that God will provide each of you and your families with healing and the strength to make it through each day in spite of the challenges that may come. By the way, if any of you have specific prayer requests, don’t hesitate to message me and let me know. You’ve all done so much for me and I am absolutely thrilled to return the favor at any time!
All my thanks,
July 10, 2008 at 5:40 pm
So happy you have a dx. Things will get easier now that you know.
AnonymousJuly 12, 2008 at 3:58 am
Having been told I had Fibro for several years while the CIDP progressed -please try some more to find diagnosis and treatment.Sometimes Fibro is diagnosed because the doctors don’t know.
Just see how well you’re doing on any new drugs and keep a journal. Okay??
Ask around for another neurologist. Folks have been to several before they found the true cause.
I was on IVIG for 6 months before I felt improvement. Having it done for 3 is about the shortest time frame for results I’ve read.
AnonymousJuly 12, 2008 at 2:04 pm
Britt, I wholeheartedly agree with Limekat. I was also dxed with fibro over 19 yrs ago, and when you look back at my symptoms and compare them to what is going on now-its obvious I was having more than just fibromyalgia going on the whole time. Your symptoms don’t exactly fit fibro symptoms in my opinion, just as mine don’t exactly fit. Please keep a journal, its time consuming if you are busy but it will mean alot in the long run. Pop in for a visit every now and then Please. Take Care.
AnonymousJuly 12, 2008 at 2:16 pm
yup! I, also, was diagnosed with fibromyalgia ~ even after the GBS. As Cheryl said, we know better now!! The issue remains that there is not enough anecdotal evidence entered into medical science and what they have to say. As with any disease process ~ [I][U]listen[/U] to the patient!![/I]
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