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    Old 03-18-2009, 07:31 AM   #1
    Tkatmolmom
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    Question Newly diagnosed

    Ok, where to start? A few days before my daughter's cheer competition (I was very stressed out) I noticed a pain in my left eye. Over the next few days my vision in that eye got very blurry in my central vision; long story short, went to my regular opthamologist who made me an appt. with a retinal specialist for the next week. Bless my optho's heart; he was very concerned and knew something was very wrong. Anyway, the retinal specialist did all these tests and told me I had optic neuritis. He closed the door to the exam room and told my husband and I that he wanted me to have an MRI to rule out MS because optic neuritis is a very common symptom of MS. I REALLY thought this would turn out to be nothing. So, when he called 2 weeks later and told me that the MRI showed 3 lesions in the white matter of my brain and that this indicated MS, I was in total shock. He talked to me for another 15 minutes, but I couldn't tell you what he said because my brain went completely numb. He did make me an appointment with a neurologist for a few weeks later.

    My neuro exam was interesting. I did well on all the pin-pricks and walking,etc., but he left to look at my MRI and came back and said I have MS. He wanted to do a spinal tap right there, but I didn't have time to lay on my back all day, so I've got that coming up on April 6th. He said that the spinal tap would show how active the MS is and then we could decide if I need to start medication. They did bloodwork to rule out Lupus, Lyme disease, etc, and that all came back negative. Also, when the Dr. was taking my history, I mentioned to him a couple of episodes of extreme dizziness that occured over the last 8 years that once was so bad I went to the ER - and he said that this didn't sound MS related but more migraine-related. (I have occasional migraines). Since I was diagnosed Jan 6th, I have been researching MS and have read about vertigo as a symptom - but this Dr. told me that it wasn't. UGH I wasn't thrilled with this neurologist - and I'm thinking about finding another one. I had to ask him questions about MS; he didn't offer me any info. So, I was wondering how everyone found their neurologist.
    Thanks!
    T in TN

    Last edited by Tkatmolmom; 03-18-2009 at 07:33 AM. Reason: more info

     
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    Old 03-18-2009, 08:07 AM   #2
    sodapopper
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    Re: Newly diagnosed

    I would say it is very important to find a good neuro that has alot of experience with MS patients, that you feel very comfortable with. The reason I choose the Neurologist I did was based on recommendations from others and many years of experience. It worked out that he takes care of alot of MS patients and that he does this very well. He also recommended that I see an MS specialist for an "academic" consultation. After meeting with the MS specialist they both said I could either be followed on a regular basis by one or the other. I choose to see my local Neurologist over the specialist. I did not like the MS specialists personality(or lack there of-I don't care if he is some MS guru!) Anyhow they both agreed on all points and the plan of care and action to be taken. My Neuro is very informative, speaks in lay terms that I can understand and spends alot of time answering questions from me and my wife both. We never feel rushed. He has helped us both to feel at ease and even comfortable with this chronic disease. Good luck. I hope you can find the right MD for you because you will spend your share of time with them.

     
    Old 03-18-2009, 09:23 AM   #3
    MSJayhawk
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    Re: Newly diagnosed

    Quote:
    Originally Posted by Tkatmolmom View Post
    He said that the spinal tap would show how active the MS is and then we could decide if I need to start medication.
    T in TN
    Your neurologist should know that a LP, when used, is only positive for 85% of those MS patients who get the LP. Your dizziness 8 years prior could have been your initial MS symptoms. While you are getting processed
    quickly, if I had your neurologist I would be querying him as to the LP statistic as well as vertigo.

    Stay positive and keep asking the tough questions; Welcome aboard!!
    I will keep you in my prayers!
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    Eternally blessed and eternally optimistic!<><

     
    Old 03-18-2009, 10:20 AM   #4
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    Re: Newly diagnosed

    Hi, first welcome to the boards. I think you will find a host of information here and some good support. Second, please let me suggest you find another neurologist. If you relayed the information correctly to us- your Neuro is not experienced with MS at all....this could be a huge problem. A Spinal Tap will NEVER tell you how much progression has developed with the MS and drugs for MS are a very individualized decision. Some docs wll say at the very first sign of lesions (which are scar tissue casued by attack on the central nervous system) that you should start DMD (disease modifying drugs) immediately and knock out the possiblity of progression. Others will say that you should wait until you have 2 or 3 attacks before you find it necessary to start drugs.
    My own opinion was when they discovered that I had MS, I had over 50 lesions on my brain- I had had a year of dizziness and heat sensitivity, but it wasnt until my entire hand and fingers went numb that I started to investigate why....that led to a dx in under a week. I started Rebif, one of the shots immediately. 3 years later Im still on it. My doc was of the school that why chance it?? Why wait until you have another episode which might leave you permanently disabled? If you can stop progression now, and avoid more attacks, then try it. I was all for that idea- and interstingly enough, my hand issues- they ARE permanent. It never corrected itself...the nerve damage is too extreme. However, I have not had a single new episode or relapse since starting the Rebif.

    you need an MS specialist- please look into it. Shout out here for reccomendations, or call your local MS society for names- but Jayhawk is right- trusting your doctor is key to geting thru this.

    Best of luck to you, please let us know if you have any specific questions that we can help with...and be careful reading the internet. Most of the info is old, outdated, or just plain "snake oil salesmen" talk....this site, one which deals with people who are honestly going thru what you are going thru, both the newly diagnosed and the old hats (like me) can really help steer you toward truth and fiction. And btw, vertigo and dizziness are a huge part of MS for SOME patients. You really could have had your onset symtom 8 years ago, thus justifying why you only have 3 lesions....and another FYI- even with 50 lesions, I work full time as a Director of a large company- have 3 kids and a needy husband...life DOES go on with MS!
    Hugs
    Nikki
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    Old 03-19-2009, 08:41 AM   #5
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    Re: Newly diagnosed

    Hi welcome!

    I went to a nuerological center out here when my leg went numb and I was slurring my speech, they did mri, ct, lp and a host of blood tests the next day I had my dx. I have always had eye problems and did have bouts of dizzyness and walking into things that I just assumed was the eyesight but now we know. I agree with everyone else go to an ms specialist. Good lick,

    hotflash

     
    Old 03-19-2009, 09:06 AM   #6
    Tkatmolmom
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    Re: Newly diagnosed

    Thank you all for the information and encouragement. I have made a request for an appointment with an MS specialist in the same group as the neurologist that diagnosed me. I feel a bit guilty about wanting to take up his time, though, because I feel ok right now and I have such a mild case of MS. But, on the other hand, I do want a Dr. that I feel is experienced with MS, and supposedly he is one of the best MS neuros in the area.

    I do have another question for everyone. When first diagnosed, did anyone else go on a rollercoaster of emotions of sorts? One week I'll be in COMPLETE denial, and the next week I'll be mad at God for letting this happen to me when I have 2 girls to raise! I know He'll get me through this, but at times the 'what ifs' scare me to death. Another thing I've been going through is every time my foot falls to sleep, or I bump into something I wonder if it's my MS. I know it's probably not, but I feel like a total NUT at times!

    Oh-well, enough of my rant. Thank you all again for all the words of wisdom and encouragement. I hope that one day I can encourage others in the same way.
    T in TN

    Last edited by Tkatmolmom; 03-19-2009 at 09:09 AM.

     
    Old 03-19-2009, 12:42 PM   #7
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    Re: Newly diagnosed

    Emotional roller-coasters are what you may ride unlimited times. When my emotions are frayed, I will retire to a private room so I do not offend anyone else. I realize it is nearly impossible when you are mom, but nonetheless, your family needs to adapt and allow you some space. You might need to delegate some of your own tasks. Learning to give up somethings will bring you benefits of more energy conserved and thereby benefit your family harmony.

    My oldest son was 12 years old when I had to go on disability. The next day he was mowing the lawn and assuming tasks for which I could no longer complete. It was hard to give up these tasks, but both my son and I grew.

    MS is a sign of the decay for which our bodies are a part in this world. Paul, on his missionary journeys, asked God to relieve him of his infirmity. God basically told Paul that God's grace was sufficient and that lest he swell up with ego/pride. Paul would have to endure the infirmity.

    My MS has allowed me untold memories. My life changed as my life had to take a new direction. Yes, my infirmity tries to clutch to me daily, but I focus on others and the beauty of God's creation. There are so many things for which to be thankful. I know in my heart that things could be worse than the circumstances which have befallen me; therefore, I need to learn to find blessings wherever they might be.

    MS allows me to slow down, smell the flowers, and tend to the flowers. Find at least one thing a day for which to be thankful. After doing so, count two things, three things....and soon you will find that your cup will runneth over. When your cup is full, you are ready to share your blessings and pay forward.
    __________________
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    Eternally blessed and eternally optimistic!<><

     
    Old 03-20-2009, 07:09 AM   #8
    mitch512u
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    Re: Newly diagnosed

    "When first diagnosed, did anyone else go on a rollercoaster of emotions of sorts?"

    I've been dx'd for over 3 yrs. and I still ride the emotional rollercoaster. Most days the MS in only in the back of my mind. Other times it fills my whole brain. Don't know if one ever gets to the point where you don't think about it at all. Would be nice though.

    Good luck to you,
    Neil

     
    Old 03-22-2009, 09:51 AM   #9
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    Re: Newly diagnosed

    You will find that you will have periods of mood swings that are very "MS related" you will find yourself snapping at people when they haven't done a thing and you know that... but there's nothing you can do about it... as for the denial to anger over the DX... that's perfectly normal we all go through it, and I believe we are never given more than we can handle... I was given a probably DX in '93 and went along with that same DX until 97 right after the birth of my second son. I have been there for my kids for everything that they need the same as any other mom, I just may have to go about a few things differently from time to time. My kids are now 12 and 13 and they know all my ins and outs and ups and downs, I think it's been easier for me having had the DX there whole life rather than to interupt their routine in the middle, but It will teach your kids some compassion for others if nothing else, and also that they better enjoy life to it's fullest, that problems such as these can come up and change their lives in an instant... it's not always the other person to have problems like this, it's universal and does not discriminate. If your kids are having problems with your dx you may want to seek counseling for them, some kids have a rough time with a parent that is suddenly ill and how they should deal with it. Just be absolutely sure to explain everything to them... MS is not fatal and does not diminish life expectancy... it just makes life harder.

     
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