Hi, Could We All Introduce Ourselves on this thread?
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looneybin94
- Newbie
- Posts: 4
- Joined: Thu Dec 30, 2004 3:00 pm
- Location: Ohio
- Contact:
Greetings and salutations. 30, female, and was diagnosed August 2004 with MS after 2 misdiagnoses starting when I was 14. I don't like doctors much. Prior to Aug 2004 I didn't know what MS was. Currently on rebif and really confused about everything that has changed and whats what. Trying to decipher the posts on MS boards with all the acronyms is like reading a foreign language so much is useless to me. Is there an acronym guide around here?
Hi, I just posted an Intro "Just joined in Indonesia"
(Would have been better alliteration if I had said 'Just Joined in Jakarta'...) I forgot personal data: I am married, have three kids ages 21, 18, and 14. Two away at school and one here in Jakarta. I teach second grade at an International school. My dx was a relief because I thought I was going blind, and the steroids filled in the black holes in my vision. Now I just want to do the right thing to keep this at bay. But living overseas, my treatment options are limitted. Whatever they decide when I go to SF has to be available in Singapore (we would never trust sources in Indonesia) or has to be shipped to me. Does anyone know about this?
--Stephanie
(Would have been better alliteration if I had said 'Just Joined in Jakarta'...) I forgot personal data: I am married, have three kids ages 21, 18, and 14. Two away at school and one here in Jakarta. I teach second grade at an International school. My dx was a relief because I thought I was going blind, and the steroids filled in the black holes in my vision. Now I just want to do the right thing to keep this at bay. But living overseas, my treatment options are limitted. Whatever they decide when I go to SF has to be available in Singapore (we would never trust sources in Indonesia) or has to be shipped to me. Does anyone know about this?
--Stephanie
Hi, Stepha! Welcome to the Board!
Yes, I can say I read these things.
The problem is, I'm not certain if anybody has an answer for you (which I agree, it IS totally rude, though, for someone to not at least say that much). My apologies. I have no excuse either, other than my concentration has been focused elsewhere, as you can see from my other recent posts lately.
Shipping of drugs...........well, me being a legal person myself, that might get a little complex. I'm not certain. Especially to the location you are at. It might depend, also, on which drug is recommended that you take. I'm not even certain where to recommend you go resource-wise to find out. I'm thinking that perhaps once you know the drug you need shipped, then we might be able to track down if, how, etc.
Oh, and to namaah, welcome also!! I know the acronyms can get away from a person, huh? Let me know which ones you would like explained, and between us all here, we can clue you in.
As a matter of fact, I'm going to profess my ignorance right now by asking Stepha a dumb question: What does SF stand for, and where is it?
Deb
Yes, I can say I read these things.
The problem is, I'm not certain if anybody has an answer for you (which I agree, it IS totally rude, though, for someone to not at least say that much). My apologies. I have no excuse either, other than my concentration has been focused elsewhere, as you can see from my other recent posts lately.
Shipping of drugs...........well, me being a legal person myself, that might get a little complex. I'm not certain. Especially to the location you are at. It might depend, also, on which drug is recommended that you take. I'm not even certain where to recommend you go resource-wise to find out. I'm thinking that perhaps once you know the drug you need shipped, then we might be able to track down if, how, etc.
Oh, and to namaah, welcome also!! I know the acronyms can get away from a person, huh? Let me know which ones you would like explained, and between us all here, we can clue you in.
As a matter of fact, I'm going to profess my ignorance right now by asking Stepha a dumb question: What does SF stand for, and where is it?
Deb
Hello namaah and Stephanie, welcome to the site. Lots of people DO read these introduction posts, but if you have a specific question it's best to put it underneath one of the topic headings (or if you can't determine which one is best, just put it into General Discussion). Welcome to both of you!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Thanks for the responses. Yes, SF is San Francisco. I will be at the University of California at San Francisco medical center for both MS and cardiology. I am expecting to have a radio wave ablation of the trigger points in my left atrium to stop the paroxismal atrial firbillations from recurring and get off the medications Tambocor and Plavix. then I can concentrate on getting something for the MS.. so much information to absorb. LDN: will it be available? Rebif: do I want it? tTat Tetracycline thing? How aggressive will the docs be, and who will the neuro be, what will they want to do... It seems like a long way to go for a lot of big unknowns. How demanding should I be, and how demanding CAN I be? I don't even know what type of MS I have yet because I have recovered my vision but other symptoms have arisen and others have recurred immediately following my steroid treatment. So-- have I had remission or am I progressive? (I did have a first round of undiagnosed symptoms a year ago and no symptoms at all over the summer, a good sign.) Probably time to move off this thread onto regimens or some other spot.
BFN
Stephanie
BFN
Stephanie
New Here
Hi all,
My name is Rose and I was diagnosed with RRMS in August of 2004. I live in Florida, divorced with a 7 year old daughter. I live with my boyfriend who is so helpful to me. I am on Rebif and neurontin and I look forward to meeting y'all.
Rose
My name is Rose and I was diagnosed with RRMS in August of 2004. I live in Florida, divorced with a 7 year old daughter. I live with my boyfriend who is so helpful to me. I am on Rebif and neurontin and I look forward to meeting y'all.
Rose
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MichelleMM
- Family Member
- Posts: 30
- Joined: Thu Jan 13, 2005 3:00 pm
- Location: Pennsylvania
New Member
Hi,
I'm Michelle and I'm fairly new here. I've made a few posts about Tysabri, but I've never formally introduced myself.
I initially started having symptoms when I woke up the day after Thanksgiving last year. Those consisted of left leg paresthesia then some dizziness. After 4 MRI's the last one of the cervical spine indicated 2 lesions at the junction of 3-4 and mid5 through 6. To verify the diagnosis, my neuro ordered a spinal tap which indicated the banding consistent with MS. So, here I am. I have started the Tysabri infusion 1/11 and was the first at my hospital to receive it. I have high hopes that this drug really does what it claims to do. I still have symptoms which now include intermittent left leg paresthesia and now some left arm and just recently right leg. A question I do have and I'm sure some of the very knowledgeable people here could help with is...Do these symptoms go away? How long does a relapse last? Since this is my first exacerbation, I don't know what to expect.
Here is a little info about me: I am 42 years old and this diagnosis came as quite a surprise since I have had a very healthy life up until now. I am a surgical R.N. at a busy city hospital and am hoping to be able to continue my work as I have in the past. The information I have read on these boards have been both helpful and interesting. Any advice or input is welcome and appreciated. I will be glad to give any information that I can about the Tysabri since I have done a lot of research on this medication and have received the first dose. (my second is due on Feb 8th).
Good Luck and God Bless all who have been so nice and offered their help and prayers. Thank you.
I'm Michelle and I'm fairly new here. I've made a few posts about Tysabri, but I've never formally introduced myself.
I initially started having symptoms when I woke up the day after Thanksgiving last year. Those consisted of left leg paresthesia then some dizziness. After 4 MRI's the last one of the cervical spine indicated 2 lesions at the junction of 3-4 and mid5 through 6. To verify the diagnosis, my neuro ordered a spinal tap which indicated the banding consistent with MS. So, here I am. I have started the Tysabri infusion 1/11 and was the first at my hospital to receive it. I have high hopes that this drug really does what it claims to do. I still have symptoms which now include intermittent left leg paresthesia and now some left arm and just recently right leg. A question I do have and I'm sure some of the very knowledgeable people here could help with is...Do these symptoms go away? How long does a relapse last? Since this is my first exacerbation, I don't know what to expect.
Here is a little info about me: I am 42 years old and this diagnosis came as quite a surprise since I have had a very healthy life up until now. I am a surgical R.N. at a busy city hospital and am hoping to be able to continue my work as I have in the past. The information I have read on these boards have been both helpful and interesting. Any advice or input is welcome and appreciated. I will be glad to give any information that I can about the Tysabri since I have done a lot of research on this medication and have received the first dose. (my second is due on Feb 8th).
Good Luck and God Bless all who have been so nice and offered their help and prayers. Thank you.
Hi Michelle,
I'm Tim and by no means an expert on MS having been dx a year and a half ago. What I do know is that everyone seems to be different. My first exacerbation was 20 years ago, tingling and numbness in both hands. The doctors thought it might be a herniated disc and I chose to recover on my own. It took about a year. Then in 2003 I had a major exacerbation, loss of feeling and weakness in my entire body and not able to use both arms and hands and lost the use of my left leg. I was treated with IV Decadron and recovered to the point of returning to work in 3 weeks. I still have some minor symptoms though. Every time you have a flareup you loose and that's why it's important to get treatment to minimize the damage.
Any problems with Tysabri? And is it true that once you start you can't come off it? I'm quite interested in this drug but waiting to see how it plays out. Keep us posted and good luck.
I'm Tim and by no means an expert on MS having been dx a year and a half ago. What I do know is that everyone seems to be different. My first exacerbation was 20 years ago, tingling and numbness in both hands. The doctors thought it might be a herniated disc and I chose to recover on my own. It took about a year. Then in 2003 I had a major exacerbation, loss of feeling and weakness in my entire body and not able to use both arms and hands and lost the use of my left leg. I was treated with IV Decadron and recovered to the point of returning to work in 3 weeks. I still have some minor symptoms though. Every time you have a flareup you loose and that's why it's important to get treatment to minimize the damage.
Any problems with Tysabri? And is it true that once you start you can't come off it? I'm quite interested in this drug but waiting to see how it plays out. Keep us posted and good luck.
Tim