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how long does it take to have MS


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Old 06-24-2008, 12:04 PM   #16
Nenu
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Re: how long does it take to have MS

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Originally Posted by mhiggin1 View Post
I'm new to the site and have the same question. I've had 4 bouts of optic neuritis on the last year and a half, with no positive tests for neither MS nor Devic's. I was on Avonex for 4 months, but the flulike side effects never subsided and I got off of it, only to experience another episode of optic neuritis and the lovely cocktail of steroids. Without a positive MS diagnosis, I'm hesitant to endure weekly sickness caused by the interferons, but the reactive steroid treatments aren't fun either. I feel like a pufferfish for a month! Is there anyone out there also in this catch 22?
Welcome to the site/family

I'm quite surprised to hear you have not had a positive MS diagnosis, however you were placed on Avonex regardless!

I suggest starting a new thread with this question. Those who can better offer advice to you, or share their own experiences, will be more likely to notice it that way.

Did you talk to your neuro/doctor regarding other treatment options since you had such problems with Avonex?
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Old 06-24-2008, 01:04 PM   #17
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Re: how long does it take to have MS

I too, question why anyone would put you on Avonex without a positive MS diagnosis..that doesnt follow protocol..
Have you seen an MS SPecialist? I know there are many in your part of the world..I would defintaely think the time has come to consult one.

As for the interferon side effects, they dont last forever- and quite possibly Copaxone would be a better choice for you, since it is not an interferon and doesnt have the same side effects...most interferons (rebif, avonex and betaseron) the side effects only last 6-8 hours and only for a few months...

But you shouldnt be on any of them without being positive for MS...so please continue to get tested! See a good MS doc and let us know how you are.
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Old 06-24-2008, 01:28 PM   #18
mhiggin1
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Re: how long does it take to have MS

Thank you MSNik and Nenu for the response. I have talked to my Neuro and he suggested Copaxone, however, I am hesitant to do it without a positive diagnosis. The decision to start on Avonex arose from my treatment at the Mayo, so I didn't question it. 4 months later I was still running 104+ degree fevers, so I felt this drug wasn't right for me. In the meantime, I continue to get regular MRI's and I'm sure more lumbar punctures to come.

Right now, I'm doing fine and hope both of you are the same. Thanks

 
Old 06-24-2008, 01:30 PM   #19
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Re: how long does it take to have MS

Quote:
Originally Posted by mhiggin1 View Post
I'm new to the site and have the same question. I've had 4 bouts of optic neuritis on the last year and a half, with no positive tests for neither MS nor Devic's. I was on Avonex for 4 months, but the flulike side effects never subsided and I got off of it, only to experience another episode of optic neuritis and the lovely cocktail of steroids. Without a positive MS diagnosis, I'm hesitant to endure weekly sickness caused by the interferons, but the reactive steroid treatments aren't fun either. I feel like a pufferfish for a month! Is there anyone out there also in this catch 22?
mhiggin, there are causes of Optic Neuritis other than MS or Devics:

[url]http://www.mayoclinic.com/health/optic-neuritis/DS00882/DSECTION=causes[/url]

If you were tested for Devics have you also had a cervical spine MRI?

The Disease Modifying Drugs such as Avonex have been prescribed for those with Clinically Isolated Syndrome (CIS) or those who are probable/possible MS but do not meet the McDonald Criteria. This is not the case for everyone with CIS or those who are probable/possible, it's up to the neuro

However, in your case I am suprised Avonex was prescribed since you have no positive testing other than confirming you have/had optic neuritis.
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Last edited by Snoopy61; 06-24-2008 at 01:55 PM.

 
Old 06-24-2008, 01:33 PM   #20
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Re: how long does it take to have MS

Quote:
Originally Posted by mhiggin1 View Post
Thank you MSNik and Nenu for the response. I have talked to my Neuro and he suggested Copaxone, however, I am hesitant to do it without a positive diagnosis. The decision to start on Avonex arose from my treatment at the Mayo, so I didn't question it. 4 months later I was still running 104+ degree fevers, so I felt this drug wasn't right for me. In the meantime, I continue to get regular MRI's and I'm sure more lumbar punctures to come.

Right now, I'm doing fine and hope both of you are the same. Thanks
I'm doing very well these days thanks! I am actually on Copaxone. It's my first drug, and so far so good. The 20ish minutes of discomfort after injecting make it a good choice in my opinion. Even if it is daily!

Did your neurologists give you any idea as to why MS was ruled out? Usually us MS'ers hear a completely opposite tale of those who have come extremely close to a full diagnosis, only to be told to 'go and live life and wait for 6 months + and then we'll see if things have changed', without being recommended for a treatment (DMD).
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Last edited by Nenu; 06-24-2008 at 01:34 PM.

 
Old 06-24-2008, 04:29 PM   #21
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Re: how long does it take to have MS

This site is great! and all of your responses have been wonderful. I went to the neurologist this morning and he did his examination of pricking and eyes etc. He felt as though my symptoms were not strong enough to be MS or other serious neurological problems - which happened last time I went a few years ago. He gave me some information on neck and back exercises but both of them hurt. I've been under a lot of stress and wondered if this was it. I'm still a bit concerned though. He told me to come back in a month and encouraged me to start working out again. I've lost a great amount of weight in the past and work out very well but with everything going on in my life I just stopped that.

I also have severe TMJ which can cause A LOT of strange symptoms, but never like this.

For the one who said you feel the tingling when you do strenuous activity, see I'm just the opposite. If I'm running around and such it's better, it's when I stop that it starts.

For the new individual, don't focus on it all the time. I found after I went to the doctor today I didn't focus on it as much and I felt better about myself. It was still there, but the stress about it was less. Try those neck exercises you can find online and back. It is a fact that muscle strain in your back can do a lot of pinching and changing of nerve activity. I'm praying at this point that is what I'm dealing with.

I will ask everyone though. Beyond the leg and arm, one of the things I deal with now is my upper lip tingling and teeth. I'm used to my face hurting because of the TMJ but this is a different type of tingling I'm not used too. Does anyone experience that? What do you think of what the neurologist said? Did anyone else get that advice the first they went to a neurologist when they suspected they might have MS?

 
Old 06-24-2008, 04:34 PM   #22
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Re: how long does it take to have MS

I hear copaxen is good. Not only that but it is the one MS injection that does not contain blood particles. I have a friend that is a Jehovah Witness that was eventually diagnosed with MS and that is the medication he could use. Me on the other hand would use whatever kept me the most functional and happy. But the good thing is that there are choices and you don't have to stick with what makes you sick.

 
Old 06-24-2008, 04:36 PM   #23
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Re: how long does it take to have MS

I'm suprised too, how many doctors have you seen for this? You should definitly get a few opinions. That is a very strong medication to be given with no positive diagnosis.

 
Old 06-24-2008, 04:46 PM   #24
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Re: how long does it take to have MS

I'm suprised too, how many doctors have you seen for this? You should definitly get a few opinions. That is a very strong medication to be given with no positive diagnosis.

 
Old 06-25-2008, 04:17 PM   #25
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Re: how long does it take to have MS

Quote:
Originally Posted by Lilred924 View Post
I will ask everyone though. Beyond the leg and arm, one of the things I deal with now is my upper lip tingling and teeth. I'm used to my face hurting because of the TMJ but this is a different type of tingling I'm not used too. Does anyone experience that? What do you think of what the neurologist said? Did anyone else get that advice the first they went to a neurologist when they suspected they might have MS?
I had facial spasm + burning mouth/tingling sensation in my lip as well, and I had already been dx'ed with TMJ. My dentist got me into a neurologist. Complete waste of time this guy was. He said I was stressed and to go home and sleep! Uhhhhh....?

I honestly knew SOMETHING was wrong neurologically at this point, however I did not mention MS, because I didn't think it could possibly be MS at that point. It was only after having L'Hermittes Sign that I suspected MS personally.
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Old 06-25-2008, 04:19 PM   #26
Nenu
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Re: how long does it take to have MS

Quote:
Originally Posted by Lilred924 View Post
I hear copaxen is good. Not only that but it is the one MS injection that does not contain blood particles. I have a friend that is a Jehovah Witness that was eventually diagnosed with MS and that is the medication he could use. Me on the other hand would use whatever kept me the most functional and happy. But the good thing is that there are choices and you don't have to stick with what makes you sick.
The other DMDs contain these? That's news to me, but I haven't actually spent too much time looking into the other options because Copax is working in my case from what I can tell.
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Old 06-27-2008, 08:35 AM   #27
Lilred924
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Re: how long does it take to have MS

Quote:
Originally Posted by Nenu View Post
The other DMDs contain these? That's news to me, but I haven't actually spent too much time looking into the other options because Copax is working in my case from what I can tell.
Yes, some of them do. It makes sense if you think about it. You need some of that strength in blood cells to rebuild the mylar on your nerves.

 
Old 06-27-2008, 12:13 PM   #28
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Re: how long does it take to have MS

Well I'm not a drug expert, but my understanding is that A, B and R work to prevent cells from crossing the barrier to the brain where the myelin is being damaged, versus C that interacts with the Tcells and works to hopefully change their interaction with the myelin.
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