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Old 09-07-2008, 03:25 PM #1
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Default New and need advise please

Hi everyone,

I am new to this disease called MS. ( For those who saw my first post in the intro area, my apoliges, I had a bad night last night and got on the pity party train).

I am 50 and after many test and Doctors I have MS. I have some questions, and not sure where to start.

My Neuro Doc feels I am in early stages of MS and at my last appointment told me he may or may not begin treating me for it. I will see him again in 2 weeks. All of the research I am reading implies that early is the best time to begin treatment with Avonex or one of the interferons. Even the National MS Society says that.

Although my EVP test was normal, my MRI showed several lesions and elevated T2 signals in a few areas. My Doc said there are some things in my Neuro Exam that I falied? I recently had a LP which I will find out results from that when I see him in 2 weeks.

I started back in the spring of this year with what I thought was just a case of needing new eye glasses, things were very blurry. But then it went into severe eye pain ( which has started again over the weekend). I was told I had ON. which they passed me onto the Neuro Doc from there.

I have lots of problems with heat in the summer and a low tolerace for cold in the winter which is worse these days. I have bad spasms in my are and leg, and have had balance issues and a few falls. In my past history, I had horrible chest pains that felt like the onset of a heart attack...but was told they were spasms and now I wonder if thats related to MS? I never even told my Neuro Doc about thhat cause I never thought it could even be related.

Anyway, sorry this is so long...I am wondering what others think of this and any advise you all may have or questions I should talk to my Neuro Doc about at my next appointment.

For now he does have me taking PT for the balance issue and Amantadine for the fatigue, which I have not yet felt any different from taking it , yet anyway.

Over the past 20 years or so, I have had many times when thnigs physically seemed to go wrong with me, but I ignored them cause they all went away. Maybe they were related to MS as well? Whats your opinion on early treatment...as I said I do not have results back from the LP, but what if it is normal?

Thanks ahead of time for listening to me ramble and advise you may have-Helen
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Old 09-07-2008, 03:50 PM #2
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Welcome and sorry to hear about the dx (diagnosis). But you're going to be surrounded by people who understand what you're going through in the friends you will make at NeuroTalk.

The "heart attack" type pain that you had might have been what's commonly called the "MS Hug." Look that up. You'll find interesting information about that. But never ignore that type of pain and assume that's what it is. It's always better to call the doc and let them know if you're having that type of pain.

Treating early is an option. There's good stuff out there. I was given the option of the CRABs drugs (Copaxone, Rebif, Avonex, Betaseron). I took the Copaxone because it wasn't going to give me flu-like symptoms even though it was a daily injection. Right now, I'm not on meds. But that's a LONG story!

Amantadine can take a little while to work. Provigil is another option. But insurance coverage may be an issue. Fatigue is just something you learn to live with.

Don't worry too much about what you failed in your neuro exam. Seriously! You failed whatever parts it was. Sure, it's fun to learn it but don't stress over it.

And that's good advice. Right now since you just got a dx, be kind to yourself. It's ok to have a pity party for a while, but then get off your butt and go about your life. You have a disease but the disease doesn't have you! Remember that--it's hard sometimes, but it's necessary. Otherwise, you walk around feeling sorry for yourself all the time. Who wants to do that????

Others will have their opinions on what type of drugs are right. Just remember, it's YOUR personal decision. Something you make and have to live with. So make the choice based on YOUR preference. And read everything you can get your hands on about the drugs--reputable stuff, so you understand them and the potential side-effects.

Information is power. It's going to help you take care of yourself better and ask your doc(s) good questions.

Consider getting and keeping copies of your medical records so that you have them should you want to change doctors. That means MRIs and all test results. Keep a file on yourself. It's smart--in more ways than one.

Look up the McDonald criteria. That's the diagnostic criteria for MS. You can see what you "need" to be dx'd with MS. You can see if it makes a difference what your LP shows.

Welcome!!
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Old 09-07-2008, 04:24 PM #3
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Hi Helen! Gazelle gave you some excellent advise so I really don't have anything to add to it!!

I've been dx since 2005 but I believe I've had MS for many years prior to that. Just putting 2 and 2 together regarding symptoms I've had throughout the years but never knew what was causing them.

Good luck to you and keep coming here and posting. It really does help. And the great sense of humor most of our members share will keep you smiling!

Kelly
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Old 09-07-2008, 05:01 PM #4
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welcome Helen sorry about the MS, but at least you can work on slowing it down with meds, you will find some wonderful people here and some fantastic support, any questions you have dont hesitate to ask, a lot of us have been there and have the shirt to prove it welcome to the NT boards
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Old 09-07-2008, 05:30 PM #5
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Hi Helen and Welcome!

I know that this is a very scary time for you. I was also dx at the age of 50 in March 2007. The first year was really tough for me due the dx and problems I had with meds. Everyone here has been really supportive. While I probably still do think about ms everyday, it is not constant. Some days are harder than others. I continue to work full time.

I did not have any problems prior to my first flare. I have also been told that my ms is mild based on number of lesions (have several) and neurological exam. However, I too have numerous symptoms. I am currently not on any dmd treatment, but that is due to serious problems I have experienced with interferons, copaxone, and tysabri. Most do recommend going on a dmd as soon as possible.

Amantadine did not work for me, but it is worth a try. I have been holding off on trying provigil for now.

Gazelle did give you some great advice. Do not hesitate to ask questions. There are lots of good people here.
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Old 09-07-2008, 07:16 PM #6
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Hello Helen and welcome to NeuroTalk. I haven't checked out your intro yet, but just wanted to chime in that I'm really glad you found us.

One day at a time, eh?? take care.

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Old 09-07-2008, 07:21 PM #7
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One big, warm, tight, hug, handshake and howdy, moose-size official type welcome to NT. This place is amazing!
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Old 09-07-2008, 08:47 PM #8
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hi helen and welcome to NT.
glad you found us.

i'm sorry about your dx.
i was dx'd at 53 and i'm 59 now.

you've gotten some good advice.
when i got dx'd my dr gave me packages on each of the 4 DMD's with videos included. i don't know if they have those anymore.

i read and watched everything. i was like a sponge.
it was my choice to use copaxone. i too traded the daily shots because i didn't want the flu like side effects. i was single and had to work FT. i also had a hx of depression and the interferons can affect your mood.

taking a med is a personal choice. but IMHO i believe that taking a med can help with disease progression and help with future disability down the road.
that's from what i've read.

the one thing that was hardest for me to learn was to listen to my body's signals. for instance, to stop running errands and go home to rest. i quickly learned that if i went past my limits i paid the price.

i too, as many of us are, heat intolerant. there are several cooling devices available that can help with that. i'm not sensitive to cold but i know others are. you'll also find that MS is a very individualized illness. sx's (symptoms) are many and varied.

please share all your sx's with your dr. and develop a good relationship with your pcp. i don't go to my neuro that often and my pcp is great.

call your local MS society (1-800-FIGHT MS) and they'll send you tons of info on MS. sometimes they even give workshops, very informative.

give yourself some gentle time to adjust. it's a lot to take in all at once.
but knowledge is power. you're the best advocate you have and the most important on your healthcare team.

i also advise keeping copies of your records and tests. call the folks that did your mri and they'll give you a cd for your own records. i tell my drs i want copies of my test results. it's your right to get copies. don't wait because then you might be charged copying fees.

i didn't mean to bombard you with so much info.
hope to hear more about you.
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Old 09-07-2008, 08:52 PM #9
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hi helen
i forgot to mention that getting a 2nd opinion even after you have gotten a dx is not a bad thing. especially if you want to try to find another dr.

i was dx'd without an LP. however, when i did have one i had 2 oligoclonal bands which cinched the dx.

i went back and read your intro. i'm glad you have your dh for support.
i'd call your neuro's office monday am and let them know you're having bad eye sx's. he might want to Rx some tx (treatment) before your appt. best to keep an "eye" on your ON.
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Old 09-07-2008, 11:35 PM #10
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Wink Thank you all for advise!

Thank you Gazelle, Kelly,Weegot, barb02,DM,MooseasauruRex and Nurse Nancy.......wow, never expected such a warm welcome and help from so many, your all the best and I'm glad I found this place.

I am going to call my Doctor in the mornig to let them know this eye pain is back, although now it seems to be letting up some today, vision is even a bit better.

I like the advise about getting copies of all my medical records/tests results etc. as well as learning from all of you that many of you share the same symptoms I have, so finally can speack to someone who understands. I don't want to dwell on the fact, with my loved ones at home, or anyone for that matter that I have MS, however, now it's nice to know I have somewhere to go for support when others here, just don't'get it'.

I am like a sponge, learning so much about MS. Actually now am excited about attacking IT for a change and living the full busy ,active life I perfur to enjoy.....not this 'OH, CRAP...THIS IS THE END OF LIFE AS I KNOW IT, I'LL NEVER BE THE SAME"blah, blah,blah...cause thats is exactly how I felt. You have all gieven me more hope. Thank you and hugs to all of you(((((((new freinds))))))))))). Helen
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