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  • Pretty certain this MS - trying hard to be positive though

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    Old 01-04-2006, 07:01 AM   #1
    df8pk94
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    Unhappy Pretty certain this MS - trying hard to be positive though

    Any thoughts would be helpful...
    In early December I had both arms fall asleep during the night as well as very sore muscles in my upper arms. One bout of fatigue wear my arms were so tired I had to sit down and rest them. MRI of spine normal, MRI of brain showed 5 white spot which were listed as potentially normal, did not look like MS. Neuro agreed. Optic nerve ok. Things have gotten worse over past 1.5 weeks though. Tingling/numbness in face/lips. Arms more sore/weak. Actually thought my tongue tingled the other day. Need I say more? Physical therapist said neck muscles were tight and C2 out of place, but I cannot believe that is what is causing all of this! I am 36 and have two small children and I am scared to death about how this will play out and how fast. Please provide some words of encouragement (if possible), but also tell me the truth! Any medication that I should start to reign this thing in? Oh, and last night, I woke up with the feeling that my skin was slightly on fire from the neck to my thighs! My PT said could be nerves, but I feel like everyone is making excuses! Thank you...h

     
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    Old 01-04-2006, 07:25 AM   #2
    KelliD
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    Re: Pretty certain this MS - trying hard to be positive though

    Well, the first thing I would do is go back to my doc and explain that nervousness is only making your issues worse..you need peace of mind..and ask him or her to begin tests to rule in/out MS and/or other similar diseases.

    Everything you are describing is indicative of MS..which is hard to diagnose because it masks itself as other things and can "hide" until it progresses far enough that docs can pinpoint it (as much as possible) through the usual tests.

    A dx can take some time, depending on how quickly you can get the tests done and interpreted.

    Until you can get the ball rolling on this, my recommendation would be to ask the doc for something to treat the symptoms. I used Amitriptyline during my dx process to help control pain, nerve-sensitive skin, and aid with calming my emotions and helping me sleep.

    Like you...all of my tests initially came back okay, but the symptoms persisted...and so did I.

    MS is different in every person. IF this is what you are dealing with, only your neurologist can determine which type of MS it is and give you an idea of what to expect. The most common form seems to be relapsing/remitting MS, which is what I am dealing with. With RRMS, you can experience an exacerbation, have it go away, and never be bothered for the rest of your life....but there are so MANY variations on the "theme," so to speak.

    Start with your doc...ask for help with the symptoms and your anxiety and insist on pursuing a more aggressive diagnostic plan. Let us know how it goes!

     
    Old 01-04-2006, 10:08 AM   #3
    df8pk94
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    Re: Pretty certain this is MS - ideas on next test???

    Thank you for the advice! Anyone's opinion on the next test I should take would be great. I have had the 2 MRIs, optic nerve, and tons of blood taken at this point - 5 white spots on brain only but told inconclusive, did not look like MS and the rest of the tests showed nothing. Should I do a risky spinal or redo the brain MRI which was done at the end of November. The majority of my symptoms have accumulated in December and January. Not sure if they would cause a change to the MRI or not. Also have a nerve conduction test scheduled for 1/18. Will that help too?

    Last edited by df8pk94; 01-04-2006 at 11:33 AM.

     
    Old 01-04-2006, 03:47 PM   #4
    dollymama
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    Re: Pretty certain this MS - trying hard to be positive though

    Hi. In August of 2003 I had lasik eye surgery on both eyes. In January I had it again on one eye. In April of 2004 I went to bed one night and felt weird. Like my head was very light. The next day I went to work and only made it halfway through the day. I called my eye guy and told him that whatever he did, screwed me up and my vision was getting blurry and my head was going crazy. He made me drive up there and then did all these tests and was adamant that nothing he did had any relation to what I was going through. He told me that by looking at me, he couldn't even understand how I drove myself to his office ! (I don't really remember either). He suggested I call an ambulance and be taken straight to the hospital. I called my boyfriend who immediately left work and had a friend drive him to me. We took my car to town and to the hospital (yes, through all this, I kept saying "I am not leaving my truck all the way up here"-he was about 30 miles away). The whole way into town I was dizzy and nauseous (picture being drunk for several days). I got there about 5pm and by the time I was seen and got into the MRI tube it was about 1230am. About 3am they came to the conclusion that I couldn't be released until I had an "LP" lumbar puncture. Well I didn't know what that was at the time, but I knew it couldn't be good. I refused it and they told me they couldn't release me without doing it. So I had them do it, to find out it was a spinal tap. I was so out of it, that I don't remember it at all. My boyfriend held my hand the entire time and I woke up at 5 am and they sent us home. Sorry to drop all that on ya, but this is a serious thing and don't take one answer for the final answer. I went to about 7 different dr's over the course of the following few months and one finally saw the white spot and had me go for another MRI. Then I was referred to a neurologist. My primary care just kept telling me "it's a virus that settled in my brain". It wasn't until December (4 days before xmas to be exact) that I was finally diagnosed. This came after spending the rest of April, all of May and part of June in my bed. That was my first episode. Before that came extreme fatigue. I think that I am much better on the Avonex and my last MRI looked good and my dr. thinks that I am doing well. Good to hear, hard to deal with. MS is a pretty quiet illness out there and I suggest if you have a gut feeling that is what you have, then do the research, talk to the dr's, get some MRI's and don't give up until someone give you an answer you will accept. Good Luck.

     
    Old 01-04-2006, 04:47 PM   #5
    StephanieAnne
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    Re: Pretty certain this MS - trying hard to be positive though

    Hi

    1st let me tell you that KelliD is the most positive, caring and understanding person, she always posts wonderful comments and she is an inspiration for me.

    2nd this board is filled with very supportive members, they make you feel like you are not alone, and that was such a welcome relief when I found this site.

    My feeling is that you have to be pro active in your health care, do research, go visit the ms society, that site is very helpful in just giving you knowledge about this disease what tests can be done, and what medications are available. Arm yourself with all the info that you can, make notes if you have to, so you can ask your dr. and be persistent, if the dr says see you in 3 months, tell him that is not soon enough the squeaky wheel gets the grease
    be the squeaky wheel!

    Don't be afraid of any of the tests, the Lumbar Puncture is nothing compared to having children and you already did that

    Try to stay positive and I do know that stress will make this worse, if you can sit and relax and breathe, it might make you feel better and stronger.

    Drink lots of water, stay away from processed foods, MSG and fast foods, and see how that works, because it works for me. I go to a nutritionist, because maybe my MS is caused by years and years of eating the wrong foods.

    Oh yeah my white spots, my neuro wasn't concerned with them, until the specialist took interest in them. Then he took interest

    Keep at it, and I do wish you the best, and please let us know how you make out

    Steph
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