Hello all on the board.
I am a newbie, female age 50 dx 4/04 RRMS symptoms beginning 07/02.
Would not jump on the MS bandwagon, so denied.
Would not even consider a serious problem until I needed neck surgery and the MRI showed spots on the spine.
After a wonderful surgery had the *pleasure* of another mri, brain scan, some ultrasound tests for a questionable Mamagram, a close up mamagram and other wonderful female testing, I was told to get myself to a Neuro.
I have had some Neuro-testing done to check my brain fog.
I am NORMAL.
A visit with the Neuro who stated she was sure I did not have MS but couldnt explain the spots on my brain scan, except MINI STROKES.
I did finally have a LP that was positive (as it can be!) for MS.
The dx was almost a relief.
I am most troubled by my DUMB days. And was so scared I was loosing my mind that I confessed to my boss, and was actually afraid I would have to quit work.
I cannot multi task at ALL. I can type, but cant spell or put the words togther. My phone skills are SHOT...I write down who I am talking to because I forget!
Im getting a prescript for Provigil..(sp) next week to help with the fatigue.
BUT I am hanging tight! I will start AVONEX in a couple of weeks, I am PROACTIVE in this. I want to stop the progression if I can!
Great Site!
debe
Hi, Could We All Introduce Ourselves on this thread?
Hi All!
New to the site and thought I'd introduce myself.
I am a 38 year old married female, no kids, with RRMS.
My MS presented itself in August of 2001 in the form of Optic Neuritis. I thought that I was going blind, and had NO expectations of being told while I was in the hospital receiving Solumedrol for the Optic Neuritis that I had MS.
But, the MRI that they did while I was in the hospital didn’t lie. I was a textbook case. I’m actually thankful for this in that there are a lot of folks who go a very long time before they are given a diagnosis.
Upon diagnosis, I snatched up a new neurologist ( I was her first patient here) that the hospital had just recruited and started on Copaxone immediately. I stayed on this for a year, but had repeated very unpleasant post injection side effects that eventually became intolerable for me. During this year, the spasticity in my legs became so bad that I started taking Baclofen. Without it, I would likely not be walking today. I then switched to Rebif after giving up the Copaxone, and tolerated it very well. During this second year, the fatigue set in so badly that even though I would get a wonderful nights worth of sleep, my forehead was ready to hit the keyboard about 15 minutes after I got to work in the morning. It continued to get worse, so I started Provigil. What a wonderful drug that is! There have been times when I have forgotten to take it and boy do I know it!!
After a year on the Rebif, I had a talk with my neuro, and we discussed the long term effectiveness of the injectible meds. He reported that some data is pointing toward them not being all that effective after about a year. (I know that some other neuro’s may disagree with this.) But, I decided to try eliminating that from my routine, and I’ve been off the injectibles for a year now with no increase or decrease in the frequency or duration of my exacerbations. So, for now, it’s working for me, and saving me a boatload of money. I have great insurance, and I was still getting killed on co-pays.
Within the last 5 months, in addition to the spasticity in my legs, I started suffering from a lot of nerve pain in my lower legs. More specifically, my shins. I could barely touch them without being in excruciating pain. Just the covers in bed would wake me up in tears. I started taking Amitriptyline in small doses and continued to up the dose until I was comfortable. Again, another drug that has made day to day living tolerable for me.
So, generally speaking, I do okay, as long as I take my meds. There isn’t a day that goes by that I don’t know that I have MS, but from the outside looking in, people are surprised to hear that I do.
I have a wonderful support network in my family, friends, and co-workers.
So, that’s my story, and I’m sticking to it!
Nice to meet you all, and I look forward to poking around here. I’m sure that you’ll be hearing from me!
New to the site and thought I'd introduce myself.
I am a 38 year old married female, no kids, with RRMS.
My MS presented itself in August of 2001 in the form of Optic Neuritis. I thought that I was going blind, and had NO expectations of being told while I was in the hospital receiving Solumedrol for the Optic Neuritis that I had MS.
But, the MRI that they did while I was in the hospital didn’t lie. I was a textbook case. I’m actually thankful for this in that there are a lot of folks who go a very long time before they are given a diagnosis.
Upon diagnosis, I snatched up a new neurologist ( I was her first patient here) that the hospital had just recruited and started on Copaxone immediately. I stayed on this for a year, but had repeated very unpleasant post injection side effects that eventually became intolerable for me. During this year, the spasticity in my legs became so bad that I started taking Baclofen. Without it, I would likely not be walking today. I then switched to Rebif after giving up the Copaxone, and tolerated it very well. During this second year, the fatigue set in so badly that even though I would get a wonderful nights worth of sleep, my forehead was ready to hit the keyboard about 15 minutes after I got to work in the morning. It continued to get worse, so I started Provigil. What a wonderful drug that is! There have been times when I have forgotten to take it and boy do I know it!!
After a year on the Rebif, I had a talk with my neuro, and we discussed the long term effectiveness of the injectible meds. He reported that some data is pointing toward them not being all that effective after about a year. (I know that some other neuro’s may disagree with this.) But, I decided to try eliminating that from my routine, and I’ve been off the injectibles for a year now with no increase or decrease in the frequency or duration of my exacerbations. So, for now, it’s working for me, and saving me a boatload of money. I have great insurance, and I was still getting killed on co-pays.
Within the last 5 months, in addition to the spasticity in my legs, I started suffering from a lot of nerve pain in my lower legs. More specifically, my shins. I could barely touch them without being in excruciating pain. Just the covers in bed would wake me up in tears. I started taking Amitriptyline in small doses and continued to up the dose until I was comfortable. Again, another drug that has made day to day living tolerable for me.
So, generally speaking, I do okay, as long as I take my meds. There isn’t a day that goes by that I don’t know that I have MS, but from the outside looking in, people are surprised to hear that I do.
I have a wonderful support network in my family, friends, and co-workers.
So, that’s my story, and I’m sticking to it!
Nice to meet you all, and I look forward to poking around here. I’m sure that you’ll be hearing from me!
TraceyK
DX - 8/01
RRMS
DX - 8/01
RRMS
Hi, I am Wendy from Kent, UK 48 years with two girls aged 15 and 12 who sometimes help and a husband who's getting better with time! Diagnosed approx 8 years ago. Been on Rebiff nearly 3 years - don't really know if it's working but am fed up with injections!! Am thinking of coming off as there is the possiblity of the goat serum (aimspro). ANyone have any comments on coming off Rebiff - did it make much difference?-
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willysnout1
- Family Elder
- Posts: 125
- Joined: Sun May 23, 2004 2:00 pm
My first symptoms were in the early '90s when I lived in Boston. Slow degradation after that, with exacerbations in 1999 and 2002. I was diagnosed in 2002 and have been disabled since then. I have taken Avonex since I was dx'd. Last fall I returned to Seattle, where I had lived for a couple years in the mid-'90s, because the summer climate is a lot less punishing here than it is in the East, and because I was constantly getting lost and having near-misses in Boston traffic. 
I am a major-league Internet curmudgeon but am a whole lot nicer in person!
I am a major-league Internet curmudgeon but am a whole lot nicer in person! 
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mscaregiver
- Volunteer Moderator
- Posts: 148
- Joined: Sat Jun 05, 2004 2:00 pm
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msoldtimer
- Newbie
- Posts: 2
- Joined: Wed Jun 23, 2004 2:00 pm
- Location: Long Island, New York
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seahorse
- Getting to Know You...
- Posts: 16
- Joined: Sun Jun 20, 2004 2:00 pm
- Location: leipzig, germany
Hi John,
welcome to this board. I'm new here, too, but already in very interesting discussions. First time I saw this board, I spent 2 hours just reading, it is really really interesting.
Looking forward to hearing from you!
Antje
By the way - very funny nick that you choosed...
welcome to this board. I'm new here, too, but already in very interesting discussions. First time I saw this board, I spent 2 hours just reading, it is really really interesting.
Looking forward to hearing from you!
Antje
By the way - very funny nick that you choosed...
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince
hi
Feesher - married to RRMS who is not net savvy and has busy career. She was dx in 1999, and shortly after had our 2 boys. During the pregnancy, and more importantly between the 2, she felt great. She has not experienced a major relapse after boy #2.
She's been on avonex for maybe 2 months.
Very little disability so far (knock knock) - stuff that we could live with forever. Hoping for something better than CRAB's soon. Sort of like the ultimate game of "chicken".
This is the best MS site.
She's been on avonex for maybe 2 months.
Very little disability so far (knock knock) - stuff that we could live with forever. Hoping for something better than CRAB's soon. Sort of like the ultimate game of "chicken".
This is the best MS site.
Better Late than Never...
Hello, all. My name is Kim. I do not have MS, but my 16 year old son was diagnosed with MS 3 years ago. It's been a really long road, lots of confusion, denial, you name it.
I've been reading on this board for quite some time, and find it really helpful and informative. I've posted a bit, but not too much.
My son is basically fine at this time. He had a really rough start, with paralysis in the left side of his body as a "wake up call". We went from a diagnosis of multiple inoperable brain tumors to a diagnosis of acute disseminated encephalomyelitis, and finally, to a diagnosis of probable MS based on lesion appearance alone. We've seen countless neuros, some pediatric and some MS specialist.
He stared out on Avonex, had one of the worse exacerbations he has ever had a little over a year into it. He tolerated the Avonex fairly well, it just didn't "hold" him. He used Rebif for 9 months without any exacerbations, but severe problems with the drug itself. (i.e. depression, site reactions, severe pain during and after the injections and everyone in the household in tears on "shot night"...) He started LDN this weekend after 6 months of research and alot of soul searching on the part of his father and myself.
I think this board has great potential, and I find it to be very informative. I have had an incident on here where another member deemed me "irresponsible" for switching my son to LDN, so I haven't made the call as to whether I will utilize this board in the way that I initially intended to, but I thought I should take the time to introduce myself anyway.
It's so nice to read the introductions and know a bit more about the people here! Take care, and have a good weekend!
Kim
I've been reading on this board for quite some time, and find it really helpful and informative. I've posted a bit, but not too much.
My son is basically fine at this time. He had a really rough start, with paralysis in the left side of his body as a "wake up call". We went from a diagnosis of multiple inoperable brain tumors to a diagnosis of acute disseminated encephalomyelitis, and finally, to a diagnosis of probable MS based on lesion appearance alone. We've seen countless neuros, some pediatric and some MS specialist.
He stared out on Avonex, had one of the worse exacerbations he has ever had a little over a year into it. He tolerated the Avonex fairly well, it just didn't "hold" him. He used Rebif for 9 months without any exacerbations, but severe problems with the drug itself. (i.e. depression, site reactions, severe pain during and after the injections and everyone in the household in tears on "shot night"...) He started LDN this weekend after 6 months of research and alot of soul searching on the part of his father and myself.
I think this board has great potential, and I find it to be very informative. I have had an incident on here where another member deemed me "irresponsible" for switching my son to LDN, so I haven't made the call as to whether I will utilize this board in the way that I initially intended to, but I thought I should take the time to introduce myself anyway.
It's so nice to read the introductions and know a bit more about the people here! Take care, and have a good weekend!
Kim
Kim R.
Re: Better Late than Never...
Hi kim, and thanks for the introduction.CCmom wrote:Hello, all. My name is Kim....I think this board has great potential, and I find it to be very informative. I have had an incident on here where another member deemed me "irresponsible" for switching my son to LDN, so I haven't made the call as to whether I will utilize this board in the way that I initially intended to, but I thought I should take the time to introduce myself anyway.
It's good to hear how things are working out for you, and I agree this board does have great potential, and I hope you continue to use it. I have moved away from time to time, but mainly because of periods of inactivity, but there is some great information on the site.
Occasionally people do have differing views, but that just helps to focus the mind, and after all, it is just ONE other persons view on a given situation.
I am currently trying LDN myself, but haven't reached a conclusion yet, I'm still in the first two weeks.
All the very best, and please write again,
Chris P
Thanks, Chris!
I will continue to read, whether I post or not. I agree that everyone has different views totally. I just take offense to someone who knows absolutely nothing about my son, myself or the situation to declare me as "irresponsible" and to suggest that I should be unable "to sleep at night"....But you are right...It's just one person's view!
Anyway, thanks for the welcome!
Kim
Anyway, thanks for the welcome!
Kim
Kim R.
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willysnout1
- Family Elder
- Posts: 125
- Joined: Sun May 23, 2004 2:00 pm
CCMom, you mentioned that your son has tried Avonex and Rebif. If you've done six months of research you know that these are the same drug, with Rebif simply being a higher dose, given more frequently and injected subcutaneously rather than into the muscle. What about Betaseron, which is a different form of interferon and is said to have milder side effects than Rebif, or Copaxone, which is a different drug altogether and is generally thought to be the easiest to tolerate?
What does your son's neurologist say about your decision to switch him to LDN? I should have asked these questions prior to stating that your decision was irresponsible. I jumped the gun, and for that I apologize.
Another question. You mention you have seen countless neurologists and your son having a diagnosis of "probable MS based on lesion appearance alone." Are you saying that no one took the clinical history into account, i.e., the paralysis and the exacerbation? It strikes me as odd that they'd give him an interferon, and especially Rebif -- the most powerful and difficult to tolerate of the bunch -- on a belief of "probable MS."
"Probable" means it's a hunch not a diagnosis. This could easily be an artifact of the way you've written or the way I've read it, so let me ask directly: Do you accept your son's diagnosis, or are you doubtful of it? It sounds as if you're doubtful and that perhaps this is part of your decision to take your son off of the recognized MS treatments and give him something that's easier to take even though there is no proof behind it.
But I don't want to put words in your mouth, so maybe you could fill it in? One other thing: Rebif has been shown to be more effective in the first six months of administration. After that, it's efficacy is indistinguishable from Avonex. Here's the full study and here's a discussion in layman's terms.
You've stated that since he's been on Rebif he hasn't had an exacerbation. Given the data in the study about the six-month effect, one option might be to go back to Avonex. If he really does have MS, that is. Seems to me that taking him off of the approved treatments and putting him on something like LDN that's being advertised as a sort of medical Swiss Army knife is a pretty drastic step.
There's an enourmous amount of quackery directed at people with chronic, incurable diseases. MS is especially attractive for quacks because there's a big population of people who have it, the symptoms are diffuse and comes and goes. So you get the stress crowd, and the herb crowd and the alternative medicine crowd. Some quacks will even claim to have discovered a cure for MS.
Again, I'm sorry for calling your decision irresponsible. I was wrong to do so. Just be careful about this LDN stuff. You son is playing for keeps here.
What does your son's neurologist say about your decision to switch him to LDN? I should have asked these questions prior to stating that your decision was irresponsible. I jumped the gun, and for that I apologize.
Another question. You mention you have seen countless neurologists and your son having a diagnosis of "probable MS based on lesion appearance alone." Are you saying that no one took the clinical history into account, i.e., the paralysis and the exacerbation? It strikes me as odd that they'd give him an interferon, and especially Rebif -- the most powerful and difficult to tolerate of the bunch -- on a belief of "probable MS."
"Probable" means it's a hunch not a diagnosis. This could easily be an artifact of the way you've written or the way I've read it, so let me ask directly: Do you accept your son's diagnosis, or are you doubtful of it? It sounds as if you're doubtful and that perhaps this is part of your decision to take your son off of the recognized MS treatments and give him something that's easier to take even though there is no proof behind it.
But I don't want to put words in your mouth, so maybe you could fill it in? One other thing: Rebif has been shown to be more effective in the first six months of administration. After that, it's efficacy is indistinguishable from Avonex. Here's the full study and here's a discussion in layman's terms.
You've stated that since he's been on Rebif he hasn't had an exacerbation. Given the data in the study about the six-month effect, one option might be to go back to Avonex. If he really does have MS, that is. Seems to me that taking him off of the approved treatments and putting him on something like LDN that's being advertised as a sort of medical Swiss Army knife is a pretty drastic step.
There's an enourmous amount of quackery directed at people with chronic, incurable diseases. MS is especially attractive for quacks because there's a big population of people who have it, the symptoms are diffuse and comes and goes. So you get the stress crowd, and the herb crowd and the alternative medicine crowd. Some quacks will even claim to have discovered a cure for MS.
Again, I'm sorry for calling your decision irresponsible. I was wrong to do so. Just be careful about this LDN stuff. You son is playing for keeps here.
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DawnsBrain
- Family Member
- Posts: 32
- Joined: Sun Jun 27, 2004 2:00 pm
- Location: South Louisiana
