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Old 07-18-2012, 12:30 PM #321
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Hi Josh! HI Susan! Hi Fuzzy!

Gosh I guess I missed the last few that slipped in the door. Welcome to the club house. Pull up a chair and read a bit, or ask a ton of questions.
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Old 07-18-2012, 07:51 PM #322
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Wink Hi I'm new! Drug reccommendations

Well.......I'll try this again, it didn't take my first post. Hi ya'll I was dx in 1997. Here's my timeline:

1997: Dx, MRI only.

7/2/12: Woke up with numb left side and speech slurring.
7/5/12: Primary dr. appt....all better.

7/8/12: Woke up numb left side & speech AGAIN.
7/11/12: New Neuro apt new dr. Puts me in hospital for IV steroids.
7/13/12: Released with only slight improvement.
7/18/12: F/u appt with Neuro....says I look improved(NO ****) Suggests Rebif, Betaseron or Gilenya, have to call him when I decide.

Went 15 years with dx and a year of Avonex in 1997-1998. Not sure I even want meds again but this 2x within 2 weeks has me scared. The lack of quality dr's around here has me worried too, I know they are qualified, but really? Going to ER for EVERY exacerbation?? Makes me very nervous and confused. I am a very strong person and if anything, I really dont have time for all this!! Suggestions?

Last edited by Chemar; 07-18-2012 at 08:05 PM. Reason: NeuroTalk language guidelines
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Old 07-18-2012, 10:31 PM #323
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Hi Dixieglfla,

Wishing you a warm welcome.

It might be best to try to get in with an MS specialist even if you have to travel a bit; so you have a more continuous case manager. The emergency room is not a very good way to go for long term solutions or care plans because continuity suffers greatly. It is also tiring to re-explain everything every time that you see an MD in there.
It really sounds like you need to speak with someone who can go over your options especially since you've already had some experience with medication.

Wishing you a speedy and lasting remission.

With love, Erika
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Old 07-18-2012, 11:15 PM #324
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Welcome Dixie, nice to meet you.

Sorry for your new exacerbation. Were you pretty much in remission for that 15 years? I started out with a 17 year remission, after diagnosis. No meds back then....

Come on in and join us..
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Last edited by SallyC; 07-19-2012 at 10:42 PM.
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Old 07-19-2012, 07:41 PM #325
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hi fuzzy,

when i got sick of the level of pain i was suffering with, without any help from my neuro, i looked up a local rehab hosp in my area. i walked in and asked if they had any pain drs and got a name. i asked my neuro to give me a referral.

that dr did more for me than anyone had. you might try that.
i also remember reading something about some kind of pain syndrome that comes about when you've had accidents etc. i can't remember the name but maybe someone will.

welcome to NT.
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Old 07-19-2012, 07:45 PM #326
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hi dixie,

i don't know where merritt is. i live in st. augustine. do you have a mayo clinic in your area. i know around me you can apply to be seen by them.

meds are such a personal choice. i personally believe in them.

welcome to NT. hope to hear more about you.
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Old 07-20-2012, 06:32 AM #327
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Smile Thank you!

Sally, yes I've had little flares occasionally but this is the BIG ONE that I've had.

After 3 days of high doses of salumedrol IV I feel like I'd be better off with Prednisone, I am better now bbut the constant "crickets" in my ears and my head feeling like I'm on an airplane along with my side being numb is driving me nuts. I miss riding my motorcycle.......I can't even sit on it and keep it balanced much less enjoy my convertible, lol.

Since this screen doesn't let you see the replies, whoever lives in St.Augustine, Merritt Island is about an hour and a half south of you on the Space Coast.....they launch the rockets in my backyard! My in-laws live in Jax so when we go that way we shop in St.Augustine and usually hit Friends Cafe in Flagler Beach. My daughter is considering Flagler College also!
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Old 07-20-2012, 07:24 AM #328
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Welcome Dixie! I am sorry you are not feeling great. Did you know Avonex changed their needle? They are now small, and have an auto injector! Thats so great! a couple of different pills are out, and we expect a new on from Biogen to be announced this fall. It used to be used to treat psoriasis in Germany.

I have a local neuro and a far away MS clinic. I go to the MS clinic for once a year and if I have hiccups during the year or little things I see the local neuro.

I hope you feel better soon.
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Old 07-20-2012, 05:30 PM #329
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Hi, I'm new here. I'm 35. Been having symptoms for years. Just recently went to the doctor because only recently did my symptoms start to scare rather than annoy me. I have a feeling I'm about to start living in the doctor world. No diagnosis yet. Went to the family doctor. She ordered a ton of blood work, EKG and an echocardiogram. Evidently, I have a heart valve thing that she found already, but that's not all. Referrals to Neuro and GI are pending. I've been getting migraines since I was 12 and have a family history of MS, Lupus and Rheumatoid Arthritis, so we'll see what all it turns out be. I've been called back in to "discuss" my bloodwork results and echo results on Wednesday. Can't say I'm looking forward to that. And as I'm sitting here typing, my right arm is going numb. Yay. I'm scared, bottom line, of whatever this is. I do get some comfort from reading ya'lls posts, so thank you.
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Old 07-22-2012, 08:02 AM #330
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Hi lawbird! I am so sorry you are not feeling your best, but it sounds like you are doing the right thing by having all specialists take a peek while they have you up on the lift. Hang around, loads to read about.
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