newly diagnosed

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mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/1/2006 7:42 PM (GMT -6)   
I was diagnosed accidentally on 9-29-2006.  Two weeks before that I had an MRI to determine if the petiutary tumor (not cancer, thank God) had reformed.  It had and the radiologist said that it looked like like I might have MS as well.  He sent me to a neurologist to see if what he wanted to do about the tumor and to find out for sure if I have MS.  The neuro looked at my mri and put me on medicine to shrink the tumor.  He also said that there was enough going on in my MRI to warrant a diagnosis of MS.  The only thing I can for sure say is a symptom of the MS right now is a problem with my right eye.  I have needle-like pains in it, mostly at night, blurred vision all the time and double-vision which seems to be getting worse now.  I have an appointment with him tomorrow to talk about what therapy I'm going to try first.
 
That explanation of how I was diagnosed was to lead up to this.  I'm freaked out and scared of what the future holds for me.  I'm so worried about losing my sight  because I love to read and do needlework.  My job requires a lot of computer and internet research, and I worry that I won't be able to keep working.  I don't know what else to say except that I'm scared.  Iwas so happy to find this site today because I need someplace to talk about how scared I am because I can't really talk about it to my sister because she doesn't really understand. 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/1/2006 9:22 PM (GMT -6)   
Hey Mesea

Welcome to the board! I'm so sorry to hear of u'r dx. It truely must be so hard to take! Wow, u got dx'd very quickly and in some ways that's fantastic. Meaning, u didn't have to endure the long wait of limbo and not knowing what was going on and the good part of that is that u can go ahead and get on some meds.

Have u seen a opthamalogist yet?? He can help look at the nerve in the back of u'r eye..optic nerve..to determine if there's optic neuritis going on there. It sounds as if that may be what's happening. With ON u can lose part or all of u'r vision and it may return or may not. U can have bouts with it and u'r vision may only blur each time. With the nervous system anything goes unfortunately. Try to relax and do some research on all this. I'd suggest the National Multiple Sclerosis Society and maybe google optic neuritis as well. Feel free to ask any questions or just vent anytime u'd like. We all understand here and are more than happy to be here for u. Again, welcome to the board!

rhonda
 
 

Post Edited (rhondab) : 11/1/2006 8:31:00 PM (GMT-7)


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 11/1/2006 9:25 PM (GMT -6)   
Hi Mesea,
 
    Bless your heart!  That's a lot to deal with all at once.  I'm sorry for the MS dx.  Research shows that the sooner progression therapy is started the better the long term prognosis is, so in a way it's a good thing you were diagnosed so quickly.  Hopefully it will slow down things with your eyes too!  We do have several here with ON as well and if you have any questions regarding that or anything else we'd be more than happy to share experiences with you.  Take care and please let us know how you are doing and which therapy you decide on.
 
Kimber
 
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mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/2/2006 7:33 AM (GMT -6)   
Thanks for the welcome. I'm trying to decide between Avonex & Rebif. Avonex because I would only have to take the shot once a week and the only other person that I've talked to down here that has MS is on it. Rebif because it seems like it would be an easier shot to give myself. I have an appointment with my doc this afternoon and will make the final decision then, I guess.

My dr is a neuroopthamologist so he checked everything out with my eyes. I guess I have ON. He just didn't want to lay something else on me that day maybe. I have had a five-day solu-medrol treatment, but it didn't help much. My eye seems to be worse now than it was before the treatment. Now, when I first look at something it doubled and if I move my head to fast I get a little dizzy. It's real scary.

whtedragons78
Regular Member


Date Joined Jun 2006
Total Posts : 74
   Posted 11/3/2006 8:30 AM (GMT -6)   
mesea, im really sorry about your dx's, I too was diagnosed on 9-29-06, but took me a 1 1/2yrs to get the answers. So looks like we are sister with same day dx. My new neuro after my dx from the Mayo Clinic, was very supportive and answered lots of questions I had. The Mayo didnt feel meds were necessary at the time, but I told the new neuro, I wanted them. I chose Copaxone, yes its everyday, but I havent had any side effects from it. Except for an initial injection site reaction (redness, small lump) which usually goes away in about 30 mins. I chose the copaxone primarily because of the lessened flue like symptoms that some people get with the MS meds. And felt that I would learn to do the injections and stick it out regardless of the reaction after the injection as my way of fight back.
My way of taking a lil bit of control in something that I have no control over.

I was and still am, quite afraid of needles so at first my husband was the one that gave me my injection every day. Then one day I tried, chickend out at the last min, so he did it. Then the next day im like ok you can do this. And a lil bit later the injection in, I felt triumphant. I did it. Then i got the auto injector, because of my fear of looking at the needle, and used it a few times. I now preferr to to the injection without the injector, except for when I have to give myself the injection in my hip area. I cant reach and squeeze so i use the auto injector.

My mother when she was initially dx'd with MS about 10 yrs ago, she started a med, but she cannot remember what it was called. She had to do it once a week, IM, after a few weeks, she stopped said it made her sicker. She was not tolerant of the flu symptoms she got for a few days after the injection. She still is not on any medications and to me denies the fact she has MS. I had decided that if the dr's said it was MS, i wanted med ASAP. and not wait till i had a major disability or lost the use of something.

welcome again, we are here for you, best support group, i could ever have.
your sister, cyndi
Mother has MS, diagnosed 10 yrs ago.
Diagnosed with spastic colon in 2000.
Diagnosed with RRMS Sept 06
Provigil 100mg, Copaxone


mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/3/2006 9:45 AM (GMT -6)   

Dear whitedragons78,

Thanks for the message.  I saw my neuro yesterday and asked him what med he thought would be best for me.  He said Avonex because I would need to come into the office to get my injection.  I have an old head injury that affects my right side so that i can't always control my hand.  Sorry about your dx too.  Sounds like Sept. wasn't to good a month for either of us this year.  I lost a sister on the 21, a favorite uncle on the 28 and then the 29 I was told that I have MS.  My dr says he thinks I have had it for a long time but because of my old injury I didn't notice possible syptoms andthe radiologists either didn't realize what they were seeing or just thought I had old stroke lesions.  This was the first time anyone had ever mentioned MS to me.  I have to admit I was and still am scared.  I have a degree in social work.  When I was in school my first internship was at an adult daycare.  My first client was a woman in her 40s that had been in the armed forces until one day she got out of bed and fell.  She was dx with MS and by the time I got to know her she couldonly move her head a couple of inches.  That's the only contact I had ever had with MS.  When the dr told me I had MS that's all I could see was this wonderful lady sitting in a wheelchair unable to move.

Now that I've found you all I see that MS is not the end of the world I just have to find a way to work around it.


whtedragons78
Regular Member


Date Joined Jun 2006
Total Posts : 74
   Posted 11/3/2006 10:12 AM (GMT -6)   
yep your right, it is scarey, and yes some cases are very severe, but the sooner meds are started the better, thats what i think and most of us here think that too.

I am aware of the fact that, eventually i could end up in a wheel chair or much worse, but on the other hand, might not have a permanent disability. even though ms is a permanent disability. everyone is different and the effects on each person with ms is different. sometimes i have to use my cane and others like i dont have ms at all.

my dr believes that ive had it for over 3 yrs when i first starting falling down, but i blew it off as being clumsy. and back then, my lesions might have not been large enough to detect on the mri.

yes we have ms, and correct its not the end of the world, its what we do with the rest of our lives that count. since my diagnosis, i have come to realize that life is a blessing, ms is a blessing for me. I appreciate everyday much more, have a new appreciation for my husband and family that care about me. kinda sad, that it took ms for me to "wake up" but im glad it did. i think now, i can live and love more fully. make "today" the best day because with or without ms, you never know what tomorrow is going to bring.

my son is in a boys n girls home, he is going some emotioal issues and my husband and i just couldnt get him the help he needs. before the dx, he was very stressed, thinking mom had a brain tumor and was going to die. now he knows what has been making me sick and he is doing much better, just knowing that its not a tumor. yes i tell him we all die some day, but that is life regardless of what we have or dont have. yes we get anry or feel sad, but its what we learn from it and how we use that knowledge in the future is what counts.

see if your town has a ms support group, some are listed on the national ms society web site, i think its under local chapter. my "local" chapter is 3 hrs away. but there is one here in my town not "sponsored" by the ms society. i havent been able to go yet, the meet once a month, and i have been in classes, but i will be going next week to my first one.

i believe that getting a network of people that understand what you are going through is sooooo important. even if its just that knowing you are not alone in this.

when we move in 1 1/2 yrs, (hubby is a marine corps recruiter) our duty here will be over, if that town doesnt have a ms support group, im going to take the bull by the horns and search and find and start one.

which is kinda ironic that i ended up with ms. when i was 13, i did the ms read athon, and was 2nd in the state of AZ for the most books read and money earned. think it was my destiny.

you have a great weekend and hope to talk to you soon.
cyndi
Mother has MS, diagnosed 10 yrs ago.
Diagnosed with spastic colon in 2000.
Diagnosed with RRMS Sept 06
Provigil 100mg, Copaxone


mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/3/2006 7:32 PM (GMT -6)   
Thanks for that encouragment whitedragon78. I will try to find a support group here. It may be that I can't reach it, but if I can't just being able to share and talk to other people that understand what is happening to me even when i don't on this board makes me feel a little better.
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