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Old 12-30-2008, 01:55 PM   #1
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Talked to my neurologist

He wants to see me next week to do another evaluation. He also said he would be sending me for MRIs to see if anything new is going on. I am absolutely terrified right now.

ETA: If it is another flare-up, does this mean that I could be classified as having progressive MS?? I've only been diagnosed for just a little over a month.

Last edited by Carol72; 12-30-2008 at 01:58 PM.

 
Old 12-31-2008, 03:36 AM   #2
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Re: Talked to my neurologist

hi Carol. Id love to know who your Neuro is (especially since we are in the same neck of the woods) however NO- with or without new symtoms, it doesnt mean you have a more progressive form of MS.

Its a really good sign that your doctor wants to keep watching you to see how you are adjusting to the meds (you just started Rebif, right?) and he wants to do an MRI to see if there is any new activity on it. My doc repeats my MRIs every 6 months!!

Symtoms come and go and during the first 6 months that you are on a drug, nothing is really conclusive....its what happens when you are on it for 6 full months that starts to paint a true picture of whether or not the drug is working for you. I think I told you, 4 months into me starting Rebif, I had the only terrible relapse ever- including optical nueritis- I was POSTIVE the drug wasnt working and they were going to take me off of it; however turns out that the drug was working, no more lesions showed and after that initial scare, Ive not had another relapse in 3+ years! And, I have one of the most stressful jobs I can think of!

Just do as your doctor says- and if you ever need a referral for a great MS Specialist, let me know. I have a really good one in Central Jersey- and a list of others (part of what I do for a living). I think its great that your doc is keeping close tabs on you!!! Let us know how the MRI goes..and try not to worry-
Nikki
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Old 12-31-2008, 04:31 AM   #3
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Re: Talked to my neurologist

I see Dr. Mandel at Thomas Jefferson in Philadelphia. I do have an appointment with an MS specialist (Dr. Aaron Miller) at Mt. Sinai February 11th (at the urging of my current doctor--he's the one who gave me the name).

Although instead of going to Dr. Miller, I am trying to get in to see an MS specialist at Jefferson (Dr. Leist). I spoke with his office yesterday, and I have to have all my reports faxed over for him to review before he will accept me as a patient.

As far as the Rebif, I am only starting the 22's tonight so I am going into my 3rd week. My anxiety is creeping up again, and I think I may have had a minor panic attack last night. I am just so terrified of what this MRI might show...plus the added stress of getting to the doctor then getting to the MRI when I have a really busy next 2 weeks of work. I just feel completely stressed and anxiety ridden--which I know is NOT good anyway....

 
Old 12-31-2008, 04:47 PM   #4
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Re: Talked to my neurologist

Quote:
Originally Posted by Carol72 View Post
He wants to see me next week to do another evaluation. He also said he would be sending me for MRIs to see if anything new is going on. I am absolutely terrified right now.

ETA: If it is another flare-up, does this mean that I could be classified as having progressive MS?? I've only been diagnosed for just a little over a month.
Your doctor will advise you as to MS type. You could go through several flare-ups and then go through a period of "normalcy". Although you have only been diagnosed for a month, it does not address the question of when you first got MS. I read of a woman who was only diagnosed with MS at the age of 70.

Whatever type of MS you have, your life is not over. My life deals with progressive MS. Please believe me when I say, you have nothing to fear.

 
Old 12-31-2008, 05:05 PM   #5
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Re: Talked to my neurologist

Jayhawk--Thinking back now (as I'm sure all newly diagnosed people do), I do believe I may have has this much longer than I first realized. I never before experienced the level of symptoms that led to my diagnosis, but I now recognize minor indications that something was going on.

You are such an inspiration to everyone on this board. I hope one day I can have the positive outlook and absence of fear about my diagnosis like you.

 
Old 12-31-2008, 06:54 PM   #6
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Re: Talked to my neurologist

Carol, Jayhawk is right, listen to him! He knows of what he speaks!!
As for your doctor, your obviously in South Jersey area...Im originally from Philly, and know the group you are talking about well...they are very good; however, they are Neuros, not MS specialists.... As far as MS Specialists go, I dont know if Id travel all the way to Sinai; there are some excellent doctors in NJ..
One of the ones that I happen to think the world of is Dr. Suhayl Dhib-Jalbut, MD, he is in New Brunswick, but well worth that ride, and closer then NY...you can look up his credentials on line- he is at Robert Wood Johnson Hospital...and one of the most respected MS specialists on the East Coast..
another one, even closer is Clyde E. Markowitz, MD who is the director of MS at Univ of Penn in Philly....also has a great reputation! I have more, if you are interested....
As for anxiety...STOP. What you are feeling is normal....honestly. Its normal to go thru stages...your body is also undergoing some changes with the meds..its all normal. Keep up the meds- and you will start to gain control of this. You might have some side effects but push thru them. It will be worth it! Your MRI isnt going to show anything new, watch and see! But definately get yourself to an MS Specialist...and keep the regular Neuro around for emergency appointments...i see both, my regular Neuro (around the corner and in my insurance plan) for checkups and he orders my Rebif and MRIs, but I copy my MS specilaist on him (dr Jalbut) twice a year and take my MRIs and any changes to him for eval....Im very happy having them both in my corner!

Let me know how your doing....and if I can help you more.
Nikki
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Old 01-01-2009, 06:40 AM   #7
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Re: Talked to my neurologist

Nikki, Thanks for the information. Yeah, I was kind of unsure if I wanted to travel all the way to NYC which is what mainly prompted me to contact Dr. Leist at Jefferson (as I had also heard good things about him through current patients and those in the medical field). It didn't occur to me that I could have a neurologist along with an MS specialist--I just assumed I had to choose one or the other.

As far as Penn goes...that was the other option in my mind pre-diagnosis when I was looking for a neurologist to see. As it turns out, I had called them both and Jefferson happened to be the one to call me back first with an available appointment the next day. Fortunately, it was around this time that Penn decided to stop accepting the kind of insurance I have (Horizon Blue Cross Blue Shield--ridiculous, but whatever...) so it ended up working out anyway.

As far as the anxiety, I did start seeing a therapist yesterday that I will see every 2 weeks and I see my PCP tomorrow for a medication evaluation. I don't feel like the Xanax is working anymore plus I'm nervous about the potential addiction. The therapist is helping me to work through the anxiety with exercises and she gave me a suggestion of med to replace the Xanax that she wants me to ask my PCP about.

Thanks for all the input, Nikki. I'll see if this Dr. Leist accepts me as a patient...if he doesn't, I would like to pursue some of your recommendations...

BTW, we have a lot in common....I also work in the health field. I am a clinical consultant for young children with autism.

 
Old 01-01-2009, 10:48 AM   #8
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Re: Talked to my neurologist

Carol, just keep doing what you are doing, and remember that everything comes in stages...and this anxious stage will also pass. This is all new to you and I think, from what Ive read here, that you are doing an excellent job of handling things. Believe me, by the time you have been dx a year- nothing will surprise you, or even bother you...you start taking it all in stride.

I am the Director of a International Pharmaceutical Company, which also specializes in Rehabs and SubAcute discharges....99% of my function is working with World Class Physicians , both credentialing them, meeting them and putting them thru rigourous academic education courses- if I dont know a physician, I have access to his life; trust me! my job is exhausting, super stressful and after only 3 months, I still dont know why I went back into corporate America (I had a very nice parttime job about 6 months ago ) except that Im extremely worried about my future, and being alone (husband needs to say yes to divorce, and no kids) - so I push onward.....sometimes, I think my job is my sanity- other times I think its killing me- but nevertheless, I have learned to live with MS and what surprises it often delivers. You will too.

Let me know how it goes with Leist....and the threrapist. We all need alittle help sometimes, but Xanax (although I have been known to pop several in my time, too) isnt what you want to be addicted to. Use them sparingly, and keep educating yourself on this disease...the more you learn, the less anxious you will be about the "unknown".
Hugs
and Happy New Year.
Nikki
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Old 01-03-2009, 06:27 PM   #9
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Re: Talked to my neurologist

do you know of an ms specialist here in texas .. other then the childrens hospital in dallas? we had a very bad experience with them and would love a second opinion outside of them.. any help would be much appreciated.. thanks.. carrie







Quote:
Originally Posted by MSNik View Post
Carol, just keep doing what you are doing, and remember that everything comes in stages...and this anxious stage will also pass. This is all new to you and I think, from what Ive read here, that you are doing an excellent job of handling things. Believe me, by the time you have been dx a year- nothing will surprise you, or even bother you...you start taking it all in stride.

I am the Director of a International Pharmaceutical Company, which also specializes in Rehabs and SubAcute discharges....99% of my function is working with World Class Physicians , both credentialing them, meeting them and putting them thru rigourous academic education courses- if I dont know a physician, I have access to his life; trust me! my job is exhausting, super stressful and after only 3 months, I still dont know why I went back into corporate America (I had a very nice parttime job about 6 months ago ) except that Im extremely worried about my future, and being alone (husband needs to say yes to divorce, and no kids) - so I push onward.....sometimes, I think my job is my sanity- other times I think its killing me- but nevertheless, I have learned to live with MS and what surprises it often delivers. You will too.

Let me know how it goes with Leist....and the threrapist. We all need alittle help sometimes, but Xanax (although I have been known to pop several in my time, too) isnt what you want to be addicted to. Use them sparingly, and keep educating yourself on this disease...the more you learn, the less anxious you will be about the "unknown".
Hugs
and Happy New Year.
Nikki

 
Old 01-03-2009, 07:03 PM   #10
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Re: Talked to my neurologist

Quote:
Originally Posted by sharingheart777 View Post
do you know of an ms specialist here in texas .. other then the childrens hospital in dallas? we had a very bad experience with them and would love a second opinion outside of them.. any help would be much appreciated.. thanks.. carrie
Carrie,

From what I have read, the University of Texas at Tyler Hospital (located on I-20) has a MS program that includes rehabilitation programs for MS patients.
I do not know where you live in Texas, but there are other hospitals in Texas that are excellent for their neurology departments. Try the university hospitals there in Dallas, Baylor, UT Austin, San Antonio, Corpus Christi, Houston......

Go online and also ask for a referral.

 
Old 01-03-2009, 07:11 PM   #11
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Re: Talked to my neurologist

sharingheart, I also started a thread for you...Texas Neurology- Dr. Steven Herzog....look into that group..
Nikki
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