medics

The only thing I can suggest is to “interview” potential doctors.

You need to find someone that will work for you… after all without patients doctors would be nothing!

You need to find a doctor that knows about CIDP and how to treat it.

Get a list of physicians and start calling.

You know your body best and need the help from the doctor to make things work the best that they can!

I know there is a UK forum on GBS/CIDP, perhaps they have a list of doctors.

Good luck,
Rhonda from Canada

I am not trying to make you feel bad, but we have a doc that fits your criteria and then some. But it was not easy, it took three other docs, 3 wrong dx and so much effort,tears and persistance. You have to keep trying. We too had the psych dx what an insult. That doc tried to get an additional $107 from us that was misbilled, I asked his attorney representing him in the bill collection if he would prefer the $107 or a lawsuit for his mis dx that I questioned him on several times. The bill was dropped AND the hosp sent $500 of gift cards when I called and asked for the doc to be brought to review before his peers. Anyway, keep trying if your insurance allows. AND, docs in the us too are just as difficult to deal with. Something I would like to add to your criteria is a doc that not only listens to what you ask, but admits that he too is learning things and offers to take info that I print out and review. I actually write things up regarding ques on articles I find and fax them before the appoint. and the doc calls w/ answers. God has really helped us find the best doc for us, I am so thankful for that and will say a prayer that you to can either have a breakthrough with your current doc or find one that suits your needs. Keep the faith!!
Dawn Kevies mom

Hi John;

I sooo get what you’re talking about!! I’m also still searching for a DX. I can’t seem to get past the initial reflexes exam. I’ve been to 2 neuros that said my reflexes seem ok….so there can’t be anything REALLY wrong, so it must all be in my head….and then sent me on my way and didn’t EVEN pay attention to any of the other symptoms!:mad: I think it’s pretty arrogant to presume something like that about anyone when you know nothing about them personally. If they knew me (and I’m sure this applies to others on this forum) they’d know that I’m not that kind of person. Yeah, I have A LOT of stress now….who wouldn’t….but I was happy and feeling fine before!

Well, at least I got them to give me a blood test for Lyme disease, (still waiting for results.) In the mean time, I’ve read many posts on this forum that express the same frustrations with doctors….so I guess it’s just the process. Anyway, DON’T give up! Others here have found doctors and are receiving treatment so there’s hope for us yet….and if not….well then all us “CRAZIES” gotta stick together, you know..LOL!!;)

Hope you get an answer soon!!
Lori

[I]Check the lists of neurologists practicing at each hospital in your area.

Check each of the docs as to where they attended medical school, where they did their residency, did they have a fellowship or become a chief resident?

My internist graduated from med school somewhere I don’t remember at the moment. But his residency was at Cedars-Sinai in Los Angeles. After residency, he was chosen to be Chief Resident.

My neurologist graduated from a med school somewhere I don’t remember at the moment. But her residency was at Johns-Hopkins in Baltimore. After residency, she was chosen to receive a Fellowship.

Their credentials are excellent. They are sharp, early to see the glimmer of possible problems, eager to listen, and … not egotistically unable to refer to someone of more experience.

You [U]can[/U] winnow down the lists of docs you want to check out further.[/I]

RESEARCH has been done about CIDP or GBS at that doc’s training hospital? For example if they only are focusing on Alzheimer’s? and nothing on Say, MS? [also a demeyelinating issue] then shy them! Further avoid all hospitals [IF you can?] that advocate exclusively the use of steroids for ALL neuro problems. Isn’t so! We all here know that! Web up any interesting doc’s name and see what papers and issues they’ve been participating in… See what the ‘attitude’ is in these papers towards the ‘patients’. IF it seems that they are able to communicate w/patients in their ‘trials’, and if they seem to have open minds about causes etc of neruo issues? Then, they mite be your person! If nothing else? It tells you where/how they ‘formed’ a lot of opinions! Bias in medicine is a big roadblock at times. I hit one at first big-time. I’m not going to do that again.
I don’t know how your system ‘works’. It can take ages to learn such things. I hope you find others who can help you! Best of hopes Truly!

Wow! I like your criteria for finding a doctor. If only one like that exsisted!!!:p Seriously, The only time I had a doctor spend over 30 minutes with me on a 1st consultation was because I was visiting from the States (Miami) in Austria and we had to communicate via an English/German dictionary at a house call in my hotel room at 1:30 a.m.! Fortunatly that diagnosis was easy, UTI not CIDP! Two different animals!
I am glad and sad to hear that I am not the only one who has been told I was crazy! It is written plain as day in my hospital records when I first was addmitted with double vision: Doctor feel this could be a psychiatric problem! What!! 6 years later, I have no reflexes, I have the NerveConductions of a 70 year old (I am 34) and I just started IVIG last week. I feel like taking my records to that doctor that said it was psychiatric and throwing them in his face! That may land in the looney bin! I have also been diagnosed with stress, fatigue, carpel tunnel and neoropathy, oh and again, psychosematic illness (made up in my head). What I did was find a doctor that had the nerve to tell me “I don’t know what you have, let’s get all your symptoms together and start ruling things out”. That was the moment I knew I found my doctor. He was not afraid of not knowing. The ones who didn’t know, they gave me a diagnosis pulled out of a hat as I got sicker and sicker. We landed on a DX of CIDP 3 years ago, but he was not able to get another doctor to agree, until now. The NCV/EMG studies for the past 3 years have shown a demylination at an alarming rate. That was why the treatment got started already. If you can get one doctor to listen to you, become a partner with you and investigate this together, you have your winner. Please be open to all personalities. The one that stuck with me/I stuck with him is one of the most disliked doctors in the field. He is known for his bad attitude. I got past that quickly, and I told him: I am not having you for dinner, I’m having you work on my case! You are the best I’ve seen and the fact that you are not blowing sunshine up my you know what and telling me it like it is, makes you the one for me.:D Six, wow, closer to 7 years later, he is still my number 1 go to guy. We have built a friendship out of dedication. He was as interested in finding out what was wrong with me and being right about it, as I was interested in getting the diagnosis that would let me know it was not in my head and get me on the path towards treatment.
Wow…. Talk about rambeling! One last word of advise, Steroids work wonders for some, and can really destroy others. Be sure if you are started on them that you start on a low dose and have the people closest to you moniteryour mood. When you are taking them, they make you blind to your flaws. I reacted very bad to them. They made me a horrible, mean person. I realized it when I had a screaming match with my husband and actually listened to the words that were launched out of my mouth. I broke down and admitted I was horrible and I never got on them again. Now he knows that when I start a new medication, he has to tell me when my personality changes because I won’t notice until it’s too late…
Best of luck my friend.

Hi Guskno,
After reading many of the posts on this site and watching Mystery Diagnosis on television it makes wonder why the right doctor is so hard to find and why a diagnosis for some the rare disease take years sometime.
I know I was lucky and not smart when I found in a timely fashion the doctor who I feel is one of the best in America and I feel blessed to be healing.
Luck and persistence seem to be uppermost in my opinion.
I will pray that you are soon in the right hands.