dr sahagian is awsome
AnonymousDecember 12, 2009 at 10:15 pm
I went to scripps encinitis. Dr sahagian is awsome. he first spent 30 minutes looking at the data before coming in to see me. then he came in and told me that he did not think I had cidp or ever had gbs. Long story short is that he is trying to figure this out. he said I have objective findings and symptoms in both central and peripheral systems. the peripheral findings dont match the latitude of the symptoms i.e. paralysis. He is ordering every test for everything. He is also looking at it from a stand point as what is receptive to PE. Because of the central lesion and the pain behind the eyes he is doing a test for Devics. And because of the muscle and the eyes involvement, he is also looking at myasthenia gravis. The important thing is that he is not ruling out anything and will make sure that cidp is not a factor also. He scheduled a muscle and skin biopsy along with an EMG all on the same day the week after christmas. he ordered heavy metal, vitamin E and lyme. If anything shows peripheral only then will he do a nerve biopsy. He even called my 3:00 appointment rheumatologist to give him the heads up on me. btw all this would be consistant with my post ” two different neuropathies or just cidp”
The rheumatologist wanted to retest the sjogrens because I had one negative and one possitive so close together and he siad I had such a low titer and I have never tested possitve in the past that it could not be responsible for all these symptoms all these years. He also did a fibro test and said I did not have that either.lol.
So Ken i owe you a debt of gratitude that I, for the first time in a long time, can hand the stearing wheel over to a doctor rather than frantically searching the internet for answers. Someone who I feel is competant is on the case. THANK YOU!!!!
AnonymousDecember 13, 2009 at 6:40 pm
That is great! Finally a dr that is willing to listen to you & take you seriously! YAY!
I forget but have you had a brain & spinal MRI with contrast? If not, maybe you should call him on Monday & ask him to throw those tests in too.
I’m very happy that you seem to be on the road to a diagnosis!
December 14, 2009 at 12:24 am
The Doctor is In. I’m so thrilled that you are getting the medical treatment you deserve. This should make your Christmas a little merrier!
AnonymousDecember 16, 2009 at 9:06 pm
I am so happy to read your news. It must be such a relief
to know that someone is really trying to give you the
answers you need! All your research and effort has paid off.
Tara, I don’t know much about Scripps except they have a
facility in San Diego. Is that where you are seeing Dr. Sahagiar?
I ask because if you are successful in getting a diagnosis, I
might want to follow in your footsteps. As you know, I have
had no luck at UCLA or USC. They just argue back and forth
about my case. They haven’t agreed on 1 thing. I am just
I am sure that my insurance would not cover Scripps as an
in house provider, but I don’t even care at this point. I have
gotten no where with all the resources that LA has to offer.
What is more debt, if I can get my health under control?
Any advice for me? Again, I couldn’t be more proud of you!
You didn’t give up and it paid off! Congratulations. I hope that
your holidays are happy and restful. Relax your mind and try
to let all that anxiety go! Just have FUN! You deserve it.
AnonymousDecember 16, 2009 at 10:58 pm
hey follow away. I am following “KEDASO” Ken. he suggested him to me. He is located in Encinitas and oceanside. If there is a name for this disease I have I would certainly say that this doctor is putting in every effort to find out what it is. I guess there is something called Athena blood tests where a blood kit is sent to you via mail and a nurse comes to your house to take the blood and send it off. He ordered that for me for Devics (Neuromyelitis optica). They rearranged schedules to fit my EMG, muscle biopsy and skin biopsy all for the same morning so that I dont have to make too many trips. Personally, its gonna be hard to pull me down from barking up the CIDP tree because I was under the impression that I had GBS for many years but I am open minded to anything the doctor thinks it might be. this thing is soo symetrical, ascending, and muscular. the loss of reflexes even went in ascending order. My blood pressure drops really low every time im in the hospital. But thats the cool thing about this doctor is that he isnt ruling anything out until its ruled out. THe other doctors just said naaah probably not and went straight to the bottom of the diagnosis upon exclusion list, hysteria. Nevermind the crazy objective evidence.
Ken suggested him to me way back this summer. I had what I thought was a really good neuro back then but he eventually diappointed me by calling me an enigma. He did warn me that Las Vegas was not equiped for my case and to get out of town. I cant say if this doctor can diagnose you but from what I have seen, he certainly is going to give it an effort.
AnonymousDecember 20, 2009 at 6:33 am
Now you know what I mean about him.
I have been seeing him for years now. He is a GREAT neuro. And he LISTENS to what you tell him !
He is Head of Neurology at Tri-City Medical Center, and also works with Scripps Hospital in Encinitas, having an office near both hospitals.
He is very knowledgeable of CIDP, and is a neuro-muscular specialist.
He works with a team of about 10 different neuros, all between the two offices, of which each neuro specializes in a different neuro aspect/specialty.
As I have told you before–many doctors give you the 15-minute rule for an office visit-then say time’s up, and go to the next patient.
I have has long conversations with Dr. Sahagian, of which my time with him went over an hour.
Tara, I do hope you get the help you need with Dr. Sahagian. He also has set up with him, different doctors he might send you to in a different specialty, that he deems are very good, as I have been sent to two different doctors by him, that I totally am pleased with as well. He uses a Rheumatologist by the name of Dr. Paul Brion, of whom is in charge of my chemotherapy. Dr. Sahagian even sent me back many years ago, to his actual teacher in med school, at USCD, who is a top teaching neurologist, and only deals with rare diseases. They were stumped with me in the beginning, as the CIDP was affecting half of my body, assymetrical. After seeing him, it turned out I did have CIDP, with a variant called “Lewis-Sumner Variant”, though as time went on, it affected both sides of my body.
And Dr. Brion is a fantastic doctor as well-I fully trust him as well.
To me, anyone that Dr. Sahagian suggests, I GO WITH. And ANYTHING he suggests, I go with. He even had an idea once–that he wanted to try on me. A year ago, the great fatigue that went with this CIDP was getting real bad–I was almost becoming bed-ridden because I had to sleep so much–at least 15 hours a day. So, he said, “I have an idea–let’s try “speed” to try to beat this fatigue.” So, he said he would prefer I dealt with a neuro who deals with sleep disorders, (in this case the opposite–how to stop sleeping”, by the name of Mindy Cetel, who knew of CIDP. So, we started with mild stimulants that did not work. Then hit on Ritalin, AND IT WORKED !!!
I use 20mg of Ritalin when I first get up in the morning, then another 20mg around 11am. It gets me through the day until about 4pm-6pm.
Again, I thank Dr. Sahagian for coming up with his “idea”.
Unfortunately, I am his worst CIDP patient, as it hit my autonomic system. And I failed at the normal protocol of treatments for CIDP, with my current Cytoxan being used to slow the progression.
But I even talked with one of his patients, who was doing okay with IVIG, and can talk to them with experience–I told him about our website–hope he joins.
I wish you MUCH LUCK with this VERY GOOD doctor.
Now for Sandila–
I used to be with the “Scripps Health Insurance Plan”, but later switched to “Healthnet” for health insurance. Dr. Sahagian takes both insurances.
And I know they take other insurances as well–all you have to do is call them, and they will tell you what they take for insurance plans.
I gave this website to Tara, as Dr. Sahagian’s team of neuros have their own website. Perhaps this might help you, or, as I suggested to Tara–to go and see Dr. Sahagian.
Their website is: [url]www.neurocenter.com[/url]
Look at their website, and give them a call. They might take your health insurance that you have–who knows?
You can see the different doctors there. I was actually with a different doctor on their team that I didn’t like, and was able to switch to Dr. Sahagian, after it was deemed by their head doctor, that I indeed had a neuro-muscular disease. I won’t say who that doctor was, that I didn’t like, but I will tell you that I totally trust Dr. Sahagian. This is a very progressive office, and they often do research as well between the different doctors.
There is a neuro there who specializes in migraine headaches, which I had awful ones in the beginning of my CIDP, as my eyes were affected and could not take light, and would turn into a migraine. Well, this one doctor had done research on patients, using anti-arthritic meds as a trial, and found they worked. I have been taking Indocin, and anti-arthritic med, twice daily, for many years now–AND HAVE NOT HAD ONE MIGRAINE SINCE THEN.
It is a very good office.
Hope you give it a try, like Tara did…and I hope you get some success as well.
All the best,
AnonymousDecember 20, 2009 at 10:26 am
Thanks to you Tara, you have inspired me to pursue my dx with a second
opinion. I get so much info from this web sight (e-mail add. etc.) I was
looking up neurologist at Barnes Jewish Hosp. yesterday and low and behold
my nephew called (who is a gastro. dr.) and he strongly recommended I get
another opinion. I haven’t talk to him in about 2 months! I’m so happy
for you to of found such a good dr. I will pray he gets to the bottom of
AnonymousDecember 20, 2009 at 1:26 pm
Thanks for your replies. I am having the EMG, skin biopsy and muscle biopsy this week. hmm I have had that same eye thing for years, ken. 5 years ago I had to wear sunglasses all the time. its wierd Ihave suspected autonomic involvment for years because my blood pressure drops dramatically everytime I am in the hospital but it never frightened me because these were acute style episosdes so of course everything is going to be effected.
I dint know if I am going crazy. certainly my notions of what is going on are not pristine as I am an avid internet searcher but the other day I could NOT push the air out of my lungs. it stopped ubruptly just below the baseline of where I inhale and exhale. I just found out yesterday that goosbumps are an autonomic function. I have been getting that on one leg or one part of one leg. My nose kept stinging like I am smelling amonia. I dont know why i didnt go to the hosptital. I am so trained to just sit and wait and see what happens or maybe I am just hoping that I am crazy.
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