made an appt with kens doctor
AnonymousNovember 9, 2009 at 10:31 pm
last week I made an appt with dr sahagian in southern ca in december. he is recommended by ken and he says he has 5 cidpers under his care he also has quite impressive schooling. I also found a doctor here in vegas who supposedly is an ALS expert and left his private practice and is a professor of neurology in the las vegas internal medicine dept and has done extensive research on neuromuscular diseases for many years. his name is dr david ginsburg. but i cant trust that anyone who lives here in vegas can be worth much. the receptionist told me he spends 1 hour with each patient. I am aware that the more doctors I switch to, the worse things look. I am just growing more desperate the worse I feel.
any opinions should I just stick with so cal or see the doc here in town?
ps the reason why I dont trust the doctors here in town is because after all these years of complaining about msucle weakness, muscle pain and neuropathy and areflexia no one has ever suggested an emg until this summer. I asked for one 5 years ago and was told nah its not cidp dispite my “gbs” history. i have been told I have TM ,possible MS, possible mixed connective tissue disease, maybe fibromyalgia, a suspicous GBS, hydrosyringomyelia and so on. when I finally get an emg it was done one month after a 5 year remission during a mild bout. it only showed denervation and reinervation consistant with some sort of poly neuropathy. not the f latency. so when I finally do get a ridiculously huge bout that puts me in the hospital the attending doctor says “I am not going to bother doing an EMG because there is a lag time for this stuff to show”. even though my discharge diagnosis was ” guillain barre exasperation” my chance to catch this thing in the act has been shot. when I got out of the hospital the doctor who said it was cidp said ” oh you have an ana titer of 1:320 go see a rheumatologist” and cut me loose unsupervised while giving me a script for 80 mg of prednisone. meanwhile extensive testing has revealed that the ANA want “rheamatologically significant”. I am so burned out.
AnonymousNovember 10, 2009 at 2:47 am
I see Dr. Sahagian on Wednesday.
Do you want me to ask him anything, for you?
I like him ALOT–you can talk to him, and he will LISTEN.
He also does his own tests, to see for himself results.
He also has an excellent assistant, Karen.
I trust him, and have now been seeing him for years.
I can recommend him highly.
Let me know if you want me to mention anything to him.
All the best,
AnonymousNovember 10, 2009 at 6:07 am
Have you ever seen Dr. Leo Germin? He was reccomended to me and he has locations in Vegas and Henderson? I do know that he requires that you have a referal from a family doctor. I saw Dr. Ginsburg years ago for a different matter. He was very nice but I don’t know anything about his expertise in muscular disorders, he is local it might be worth a shot. You should probably see Ken’s doctor too and then decide which one you are most comfortable with. I know this is frustrating…………Good Luck
AnonymousNovember 10, 2009 at 9:02 am
Keep y our appt with Ken’s doctor if after that appt you want to check out this vegas neuro then make an appt. You have to do whats best for Tara and y ou need a neuro who you can TRUST and one who is going to listen to you. demand a EMG I just dont get the neuro who told you that it was to late to do an EMG obviously he is unknowlegable and ignorant. an EMG to my understanding will show demylenation if there is any. demylenation doesn’t heal in a matter of weeks it takes a long time. But you know that.
Some of these neuro’s need to get over themselves already. They have a God complex because they are so smart and have that degree but they forget about the patient and what the patient is telling them. its like they sit there and tune you out while your explaining everything to them. Its like talking to a brick wall. YOu just want to look them right in the eye and say hello did you just hear anything I said..
I personally think that you might intimidate them because you know and use so many medical terminology. warn the next neuro you talk to before you explain your symptoms that you will be using medical term. so they dont get lost in translation or their God complex dont kick in. These docs might hear you and then cop and attitude of I’m the doc and she isn’t going to tell me whats wrong with her. I truely think that is what happens sometimes. But you know your body and how you feel and you know what you have experienced over the past 5+ years. YOU experienced it not them. so remind them of it if you have to. They spend a short time with you collecting info but you spend every minute of everyday with yourself and you know what your feeling.
When Ryan was admitted to the hospital a few days after dx of CIDP in Dec 2008 he like I said aLready had been dx with spinal tap, emg and symptoms but there was a neuro resident who came in to check him out as soon as we got there and he asked his questions and I told him what Ryans dx was and first thing out of his mouth was you have the wrong dx. there is no way Ryan has CIDP. I guarantee I will find out the real dx before you leave. well I was shocked and mad. I looked at him and asked him how he could stand there and say such a thing. I told him to go look up CIDP and compare Ryan’s symptoms and his test results to the findings and come back to see me if he disagreed. his problem was, was that I told him ryan was dx with CIDP he had the God complex and thought he knew more because of his degree. I later told him if he wanted to make a good neuro then he needs to listen to his patients and not to get caught up in his ego. I told him if he doesn’t agree with a dx then dont make some grand announcement to everyone that you disagree but prove it to be wrong before you announce it. do it quietly. you wont make yourself look like such a fool as often. haha!! I hope he listens.
anyways Tara do whats right for you and if it takes seeing a 100 or more docs to get one who listens and that you like then so be it. dont worry about what they think of you. tell them you are on a quest to finding a “good” doc. anyone can be a doctor but it takes a special one to be a great doctor.
Good luck and I will be praying for you
Rhonda (Ryan’s mom)
AnonymousNovember 10, 2009 at 10:03 am
thanks all. yeah I should warn them that I have been around the block or two. I really try and tone it down but its hard this stuff is part of my vocabulary and I dont even realize when I am using medical terminology anymore. In the past I have seen doctors and just told my story. now I have every test and report since 2002 organized in a binder by catergory and chronolgy. it took alot of foot work. I have not sat down with a doctor since I have done this. the evidence is overwelming I think. for example my neurologist said ” oh you must have lost your reflexes during the gbs in 2002″ I later found out that I had some reflexes two years after the original bout “1+”. now I have none anywhere. that would have been important to be able to prove at the time
I saw dr leo germin last summer the arrogant **. I think hes from behind the iron curtain and has a specific attitude of his priveleged place over you. he is the one who spent 3 min on my emg and told me that cidp didnt come relapse remmitting. i probably would go see him if I had vascular involment though. he is supposed to be a pretty smart vascular neurologist.
yeah ken if you could just drop my name tara huff and say I will be coming on the 11th of december. the most telling part of my situation is that I have been effectively treated with plasma exchange twice. I think an endorsment would be helful at this point. thanks a bunch
AnonymousNovember 11, 2009 at 11:49 pm
Dr. Sahagian is a great guy. As you know, most doctors schedule a
15 minute appointment with most patients, due to payments of health insurance.
Today’s appointment with him lasted over 1 hour. My CIDP is getting worse, and we had a lot to discuss. But that is a good doctor is–he takes the time to LISTEN to me, and we talk about alot on my disease. I am going downhill, but that is another story, far too much to mention here.
But I mentioned about you, Tara. He knows I am part of the GBS/CIDP website, and I tell him how we support each other here. I told him how you are from Las Vegas, and that there are not many good neuros there.
I told him how you are part of Scripps with insurance, and that I recommended that she see you. I told he how you have an appointment to see you in December, and your first name was Tara,
I could not remember all your current problems, but I did ask him this–
I mentioned that you had GBS to start with, and you had a second bout with it–I then asked him that doesn’t a second bout with GBS symptoms mean CIDP–and he said YES, OF COURSE THAT WOULD BE CIDP.
Please feel free to discuss EVERYTHING with him–I think you will like him. And, as I mentioned–he does his own testing and will probably want to do some testing on you. You may want to ask him to do current testing with you, so he can compare past testing, and if there is a decline or status quo. And you may want to ask him to do a skin biopsy, to see if perhaps the CIDP has hit you autonomic system, which could be the solution to some of the problems you are running into.
He is VERY knowledgeable in his specialty. And what I like, is that he will send you to a different person of a different specialty, for treatment not under his specialty, such as he has a very good rheumatologist who is in control of my chemotherapy, as he says, that person is more knowledgeable in that specialty, rather than have himself in control of something he does not have FULL knowledge of, though the two doctors compare notes with each other all the time on me.
Good luck, Tara, and please let me know how it goes with Dr. Sahagian–I have been with him for years now.
All the best,
AnonymousNovember 12, 2009 at 9:59 am
I am very saddend to here you are not doing well. thank you so much for all your effort. he sounds like a very promising lead. the fact that he doesnt bat an eye at saying two GBSs = A CIDP makes me very encouraged especially since my gbss never overtook me completely like I here other gbsers had. thank you so much.
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