klos
04-27-2007, 11:07 PM
Back in Feb. I started getting symptoms like numbness on the right side of my body, pain behind right eye, double vision, blurred vision.
By the end of March I thought I better get this checked out. When I went to my primary physician he immediately ordered blood work and an MRI of the brain witch caught me off guard a little.
I returned a few weeks later and was told that there were several small lesions on my brain and that I may have MS. Needless to say I was SHOCKED!
I've seen a neurologist twice now and after an MRI of my neck and back there has been two more lesions found.
the neuro says that he sees no need for a spinal tap because the results of the blood work and MRI's is clear enough evidence for him for an MS diagnosis.
should I be skeptical?
Should I get a second opinion?
Can he be sure without a spinal tap?
He prescribed Betaseron is that a good treatment?
Sorry for all the questions, just a little worried. Any info is very much appreciated.
By the end of March I thought I better get this checked out. When I went to my primary physician he immediately ordered blood work and an MRI of the brain witch caught me off guard a little.
I returned a few weeks later and was told that there were several small lesions on my brain and that I may have MS. Needless to say I was SHOCKED!
I've seen a neurologist twice now and after an MRI of my neck and back there has been two more lesions found.
the neuro says that he sees no need for a spinal tap because the results of the blood work and MRI's is clear enough evidence for him for an MS diagnosis.
should I be skeptical?
Should I get a second opinion?
Can he be sure without a spinal tap?
He prescribed Betaseron is that a good treatment?
Sorry for all the questions, just a little worried. Any info is very much appreciated.
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Bearygood
04-27-2007, 11:25 PM
Not 100% my story but similar enough. Yup, I get the shocked thing. That's sure how I felt and to a certain extent, still do. My 5 brain lesions were "classic" enough that combined with my history a "clinical diagnosis" could be made. (I'm putting the doctors' words in quotes there -- kind of med school textbook reference stuff.) My neurologist has now orded a more thorough MRI of the brain and one of the spinal column. He said he might want additional blood work but hasn't ordered a spinal tap. If you have any doubts at all and feel a need to be more sure, I'd definitely get a second opinion. Certainly couldn't hurt and might give you an opportunity to get more professional input about your situation and how recommended treatment. I'm far from the pro here but from what you're describing it sounds like my doctor would be saying the same thing. But it still doesn't matter, you have to be satisfied within yourself!
Lisa_P
04-28-2007, 01:22 AM
If they do order an LP (spinal tap), it's really not so bad. They just want to test the fluid for certain elements. There's no one thing that says MS, so your doctor is probably safe to find indicators elsewhere (history, MRI, etc.).
kimpossible67
04-28-2007, 08:02 AM
You could get a second opinion if it makes you feel better. I'm one of the nay-sayers on spinal taps. You couldn't pay me to have another one. Not only that, but mine was negative and I was diagnosed anyway. I'm in Michigan myself, the thumb area.
klos
04-28-2007, 10:13 AM
Kim- you’re not that far from me. I'm in Goodrich near Flint.
I really don't want a spinal tap if I don't need one. I just wanted to know if any of you have been successfully diagnosed without one.
I didn’t realize this would happen so fast. After two visits to the neuro and two MRI's the doc wants me to start Betaseron immediately. I'm only 29 years old and kind of leery of injecting chemicals in my body for the rest of my life.
Any other advice?
Anyone use anything else to supplement there MS medication?
I really don't want a spinal tap if I don't need one. I just wanted to know if any of you have been successfully diagnosed without one.
I didn’t realize this would happen so fast. After two visits to the neuro and two MRI's the doc wants me to start Betaseron immediately. I'm only 29 years old and kind of leery of injecting chemicals in my body for the rest of my life.
Any other advice?
Anyone use anything else to supplement there MS medication?
msladyinca
04-28-2007, 04:21 PM
Hi klos,
You can have a negative spinal tap with a positive MRI (showing MS lesions), or a positive spinal tap (showing MS 'bands') with a negative MRI (clean with no lesions). As some have stated, there is no one test for MS. Imho, usually one or the other of the above tests will suffice when sometimes combined with an EMG, EP'S, clinical history of symptoms, etc., to rule out any other possible dx's (like Lymes, Stroke, Lupus, and so on).
Fwiw, if you feel comfortable with your neuro, I don't think a sec. opinion is necessary (I'm not a dr though), however, if you do feel the need for a sec. opinion to put your mind at ease, I say by all means have one with a MS Specialist.
Betaseron is the oldest of the older generation DMDs (Disease Modifying Drugs) and it is an interferon 1-b (shot, sub-q every other day).
I am on the newest DMD in over a decade for MS - Tysabri - (infusion every 4 weeks) which has a proven superior efficacy of 67% in stopping/slowing the disease process and preventing new lesions with their accumulating disabilities.
Whichever DMD you choose, don't be afraid to as your dr questions (that's part of what he/she is there for and gets paid for!). I wish you only the very best klos...,
(((((hugs)))))
Lauren :)
You can have a negative spinal tap with a positive MRI (showing MS lesions), or a positive spinal tap (showing MS 'bands') with a negative MRI (clean with no lesions). As some have stated, there is no one test for MS. Imho, usually one or the other of the above tests will suffice when sometimes combined with an EMG, EP'S, clinical history of symptoms, etc., to rule out any other possible dx's (like Lymes, Stroke, Lupus, and so on).
Fwiw, if you feel comfortable with your neuro, I don't think a sec. opinion is necessary (I'm not a dr though), however, if you do feel the need for a sec. opinion to put your mind at ease, I say by all means have one with a MS Specialist.
Betaseron is the oldest of the older generation DMDs (Disease Modifying Drugs) and it is an interferon 1-b (shot, sub-q every other day).
I am on the newest DMD in over a decade for MS - Tysabri - (infusion every 4 weeks) which has a proven superior efficacy of 67% in stopping/slowing the disease process and preventing new lesions with their accumulating disabilities.
Whichever DMD you choose, don't be afraid to as your dr questions (that's part of what he/she is there for and gets paid for!). I wish you only the very best klos...,
(((((hugs)))))
Lauren :)
Bearygood
04-28-2007, 11:49 PM
I didn’t realize this would happen so fast. After two visits to the neuro and two MRI's the doc wants me to start Betaseron immediately. I'm only 29 years old and kind of leery of injecting chemicals in my body for the rest of my life.
I'm older than you and I hear you on that concern. This is so much about personal choice but making sure you make your decisions based on as much educated information as you can. At least at this point in time I've personally made the choice to not inject but as you can see just from this board, many people feel that drug intervention has helped them a lot.
I'm older than you and I hear you on that concern. This is so much about personal choice but making sure you make your decisions based on as much educated information as you can. At least at this point in time I've personally made the choice to not inject but as you can see just from this board, many people feel that drug intervention has helped them a lot.
MSNik
04-29-2007, 03:44 PM
Just something to think about. A. Youve probably had this disease alot longer than you have known, so waiting a few more weeks or even months to start meds isnt going to kill you...and B. there are so many choices in meds you really want to talk to people who are on each one, and see how they feel about it. You also want to think about your body type. Can you inject sub-cutaneously, or is Muscle better? Would you rather do it daily, or weekly, or in between? (rebif, is 3 times a week). Things like this. I was diagnosed at 39 and rushed to start Rebif, simply because I was feeling so awful. I wanted to prevent it from becoming permanent. And, it did...it worked for me, I had 50+ legions on my brain and was in a horrible relapse when I started. Once the relaspse stopped, I felt alot better and havent ever had that kind of relapse again...however, there are other things to think about.
When you see people with MS who are 'older" and disabled...they didnt have any med choices 20 years ago. Most of them became disabled because they had no options to slow down the progression of the disease. So stop and think, do you want to do anything you can, to make sure you dont wind up there, or do you want to risk it (what are your odds? You can tell by where the disease is and how many legions you have....you can watch your MRIs over a year and see if they get worse or not) but you also have to realize by risking it, not every relapse is going to be 100% recoverable. The idea behind the shots is to PREVENT relapses and minimize new legions. For every new legion you DONT get, you wont have the possiblity of a relapse.....for every relapse you DO prevent- you wont have a disability to worry about..at least not this time. Everyone I know who is disabled and in worse shape than me WISHES they had had the opportunity to go on a disease modifying drug 10 years ago...they say that their MS progressed over the past 10 years probably because they werent taking anything...
Now, the choice is yours, but this is why your doctor is telling you to do it now...which one, is up to you and your doctor. Trust me, you tell him you want to take Rebif over Betaseron, becasue you want to inject it 3 times a week, instead of every other day, he will probaly say fine. You say you want to take Avonex once a week instead of 3 times a week, he'll probably say fine...most docs dont care which one you go on, unlesss you honestly have a reaction to one of the Interferons....
Also remember, each of these has side effects, mostly site reaction marks and flu-like symtoms. It took me 6 months and I have never had another side effect, but you do have to bite the bullet during the time it takes to get used to the drug....
good luck.
Nikki
When you see people with MS who are 'older" and disabled...they didnt have any med choices 20 years ago. Most of them became disabled because they had no options to slow down the progression of the disease. So stop and think, do you want to do anything you can, to make sure you dont wind up there, or do you want to risk it (what are your odds? You can tell by where the disease is and how many legions you have....you can watch your MRIs over a year and see if they get worse or not) but you also have to realize by risking it, not every relapse is going to be 100% recoverable. The idea behind the shots is to PREVENT relapses and minimize new legions. For every new legion you DONT get, you wont have the possiblity of a relapse.....for every relapse you DO prevent- you wont have a disability to worry about..at least not this time. Everyone I know who is disabled and in worse shape than me WISHES they had had the opportunity to go on a disease modifying drug 10 years ago...they say that their MS progressed over the past 10 years probably because they werent taking anything...
Now, the choice is yours, but this is why your doctor is telling you to do it now...which one, is up to you and your doctor. Trust me, you tell him you want to take Rebif over Betaseron, becasue you want to inject it 3 times a week, instead of every other day, he will probaly say fine. You say you want to take Avonex once a week instead of 3 times a week, he'll probably say fine...most docs dont care which one you go on, unlesss you honestly have a reaction to one of the Interferons....
Also remember, each of these has side effects, mostly site reaction marks and flu-like symtoms. It took me 6 months and I have never had another side effect, but you do have to bite the bullet during the time it takes to get used to the drug....
good luck.
Nikki