Who to beleive……….
AnonymousSeptember 21, 2009 at 8:01 am
Am in a bit of a quandry here, due to the loss of my job we had to relocate to west Texas from St. Louis and am in the process of finding a new nuero. that I can work with. Went to visit the new guy last week, he ran a few basic tests and did a new nerve test and his preliminary thoughts are that I do NOT have CIDP but rather had GB instead. This is based on his interpretation of the new nerve test that he says looks normal. Am supposed to go see him in a couple weeks to get his final dx and treatment plan after he finishes reviewing the test results from the latest EMG and compares it with the last 2 the other Dr’s did.
My quandry is whether I should go along with him or believe the team of Dr’s that I have been working with for the last 2 years.
The GB thought is interesting, although it really doesn’t fit with the way I’ve been feeling recently…have been feeling like I am right on the edge of a relapse for a month or so now so am rather confused.
Has anyone gone through this? And if so how did it work out?? Thank you in advance for any thoughts anyone might have as this is about to drive me nuts……or maybe I should say more nuts than I already am….LOL
AnonymousSeptember 21, 2009 at 8:47 am
My advice is…
ALWAYS listen to your inner voice.
Seems to me you believe you have CIDP. You feel you are on the verge of a relapse. I would go with that, you know your body the best.
This new dr has only seen you one time. He saw you when you were doing Ok. The other dr’s, I’m assuming, saw you at your worse moments. I think they have a better idea of what you are dealing with.
Would it be possible to get in touch with the old dr(s) and ask for someone to make a phone call to the new dr. Tell them new dr doesn’t believe you have CIDP but you feel on the verge of a relapse & you feel having the dr’s speak to each other would greatly benefit you.
AnonymousSeptember 21, 2009 at 9:53 am
Yes, I think I can say I’ve been through this. About four years ago I was told that I also have Charcot Marie Tooth; CMT; as well as CIDP. Neurologist #8 just took one look at my feet and told me I have CMT. Now, how is it that 7 other neurologists never diagnosed the CMT, didn’t see it, missed it, doesn’t make sense to me. And how am I supposed to sort through the symptoms of CMT as opposed to CIDP and say yes I have CMT.
I decided to listen to my gut feelings, my instincts, which are excellent and stay with just the diagnosis of CIDP, but I keep a maybe for CMT in the back of my mind.
September 21, 2009 at 11:56 am
Recently my son had another ncv/emg, 2 years and 10 months into this. We have been on ivig since the dx 2 years ago. This last ncv/emg was normal with the exception of one border line nerve. This result is not because we do not have cidp anymore, but because the ivig has kept it in control and the nerves have been able to heal. Currently we ARE in a weaning down of ivig with no ivig the ultimate goal to see if we are in a true remission or one that appears to be a remission due to ivig a medicinal remission. I just consider it “under control” with ivig. If we should start feeling relapse symptoms, we have the last ncv/emg to compare to the last to see if progress starts again. If it were me, I would suggest to the doc that ivig has been used and that is why the study appears normal. Tell him that should symptoms reappear and weakness emerges, ivig would again be in order once another ncv/emg is compared with this last. Do your old records have several ncv/emg’s that you could use to show there indeed was a progression? Could your old doc confer with this new doc and explain why indeed he thought it was cidp and not gbs? Worse / best case scenario, you get off of ivig and continue to feel good, perhaps then you could say remission. Or, this doc is on the fence and thinks gbs, you wait and see, symptoms return and you get back on ivig. It seems that if you are able to convince him you need to go back, nothing is lost. On the other hand, if symptoms do not appear, you have the very fortunate news of a remission. Good luck int your decisions.
Dawn Kevies mom
AnonymousSeptember 21, 2009 at 3:55 pm
[COLOR=”Sienna”][FONT=”Georgia”][SIZE=”2″]Having worked in the medical biz for 35+ years, I am not at all anxious to think that I’ve found a good doc, no matter the specialty. Where did your doc go to school? Where did he do his internship? His residency? Did he do a fellowship?
My current neuro did her residency at Johns-Hopkins, premiere institution. She also did fellowship there. She has no hesitancy sending me for second opinion with her “guru” who is associated with Weiss-Cornell.
Do your research. Find someone with the “balls” background that you’re comfortable with.
Having a son-in-law and daughter in Lubbock, once a professor @ his bachelor’s degree school, and since screwed over by university politics, I can tell you that Lubbock is an area where you should research, research, research.[/SIZE][/FONT][/COLOR]
AnonymousSeptember 21, 2009 at 11:27 pm
CIDP is such a rare disease that many neurologists never see one case. I have found these last many years that doctors when they don’t know rarely tell you. I had to beg to see other specialists and was told for years I had Fibromyalgia. If only I have gone to a decent neuro who knew cared enough to figure out what was wrong.
Please get your previous medical records and find some one in your area who knows about CIDP. Having a relapse without a neuro who understands would be awful.
AnonymousSeptember 22, 2009 at 7:27 am
Thought the situation over yesterday and am going to keep my faith in the St. Louis bunch. I think what I will do is hear this new guy out and have him put his plan in writing and have my St. Louis neuro look it over and get his impression, if he says what I think he will I will do what needs to be done to stay on good terms with him till I find someone here. If need be I will just travel back and forth as needed. Thanks for the comments and suggestions.
AnonymousSeptember 24, 2009 at 10:28 pm
Make sure the “new guy” gets the other Dr. office notes. Even if you have to deliver them personally.
It is possible for CIDP to have a “longer” remission. Some on the forum have had more than 5 years between relapses. If you are in a longer remission, the solution may be thought as GBS. The definition of CIDP is more than 8 consecutive weeks of attack. Making it Chronic. If he was unaware of the earlier activity, he may be confused about the current status.
Either way, educate the new neuro. I went through a very similar situation. New neuro wanted a whole slew of tests. In some cases I just said “NO. I have had enough of them, and the results are recent and clear. Please use the earlier results.” This is one of the largest wastes of our insurance program. Test test test. I am all for tests to diagnose, I hate tests to replicate other tests.
Anyway, off my soapbox.
Good luck with your new neuro. Educate him, and get them to work for YOU. Because you are paying the bill. (Even if it is insurance, you are paying the premium. Even if it is insurance through work, it is part of your compensation package.)
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