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Newly diagnosed today

Posted: Tue Nov 26, 2013 6:42 pm
by Cbridgeman
Finally got a call back from my neuro, and with one lesion on my brain and one on my spine that caused left sided parathesis (numbness) last August, and with more than five oligoclonal bands in CSF, I have my MS diagnosis. I was actually more upset at the doc not calling back for more than a week after her knowing the results (long story) than the actual dx.

Anyway, now I'm trying to figure out which of four DMDs to start...Copaxone, Refib, Betaseron, or Avonex. Any thoughts or experiences?

Thanks in advance.

Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 6:30 am
by want2bike
Don't let them scare you into taking the drugs. Many people treat their MS with diet rather than drugs. The drugs do more harm than good. Diet is the only way to help your MS. Here are a couple video's explaining it. Get all the information before you decide on the drugs. Make it your decision. You can get better if you choose the right path.




Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 7:08 am
by DougL
Cbridgeman wrote:Anyway, now I'm trying to figure out which of four DMDs to start...Copaxone, Refib, Betaseron, or Avonex. Any thoughts?
i say call your neuro back and ask which one they get the biggest kick-back from. might as well have one person benefit from the drugs you will be taking

Disclaimer:the previous statement has not been evaluated by the FDA and in no way should it be taken as medical advice. There is no evidence that any of these drugs don't help pwMS

welcome to TIMS. many people here (and elsewhere) think DMD's only line the pockets of the Dr. and drug companies. personally, i don't have enough info to know if they work or not. good luck on whatever you decide. remember it is your decision to make.

Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 1:11 pm
by LR1234
I personally would get on a drug and my choice would be copaxone.
I have to be honest and say that who knows if it's helping or not but I do lots of diet things too. I just kinda think anything that might help us worth trying....
For some they really work. I went many years on no drugs and got more and more symptoms but copaxone has helped me some with fatigue but I still have symptoms.
I'm going to try one of the stronger drugs to see if that can kerb ms.
I am very anti drugs have been and always will be however I would rather take something even if it only helps a little. (Just wanted to make sure you had another view)

Good luck with whatever you decide x

Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 4:55 pm
by jimmylegs
last week i went for my first appt in the ms clinic since 2006 (when I was diagnosed). the doc wondered if I wanted any treatment and I said no thanks. he said, the drugs have not been shown to slow progression, but they can cut down on relapses. and I said, I don't have relapses. so that was that.
the reason I was not on a drug in the first place was b/c I didn't really trust the diagnosis. it's a very individual decision.

Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 6:11 pm
by MarkLavelle
Cbridgeman wrote:Anyway, now I'm trying to figure out which of four DMDs to start...Copaxone, Refib, Betaseron, or Avonex. Any thoughts or experiences?
You can listen to the conspiracy theorists and the like, or you can take a chance on the best modern medicine currently has to offer. Unfortunately (in terms of quality of advice), you have posted in the land of conspiracy theorists and amateur scientists.

There is nothing wrong with diets, etc., other than the fact that no one has found a way to do rigorous diet science. No one seriously doubts that eliminating junk and sticking to 'whole' foods is good for you, but no one can prove that any particular diet is particularly good for MS, either.

I may be too conservative, but I use Copaxone because it has been shown to reduce the frequency of relapses and it has the least serious side effects. In my particular case, the fact that Copaxone is not an immunosuppressant was also a factor (my immune system has already been 'compromised' by chemo & radiation).

Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 7:16 pm
by want2bike
Here is a site where people taking copaxone have to say about the drug. You can check out the other drugs on this site to see what people have to say. Good to know what others who have taken the drugs have to say about their experience.


http://www.askapatient.com/viewrating.a ... e=COPAXONE

Re: Newly diagnosed today

Posted: Wed Nov 27, 2013 8:09 pm
by jimmylegs
thank goodness we have decades of nutrition science to work with, if we choose :)

Re: Newly diagnosed today

Posted: Thu Nov 28, 2013 2:46 am
by NHE

Re: Newly diagnosed today

Posted: Fri Nov 29, 2013 6:38 pm
by Cbridgeman
Many thanks to you all for your thoughts. I agree it is my decision. I'm still not sure what I will decide, but I will incorporate your feedback into it. Again, many thanks.

Re: Newly diagnosed today

Posted: Sat Nov 30, 2013 12:12 pm
by Fayruz
Maybe it could be helpful for you to remember that you don't have to decide this minute. You can take your time and think it through, read through the forum and other sites and decide then.

My neurologist wanted to put me on Copaxone but I have declined that for the time being because I wanted to gather more information since I don't that that kind of decision lightly.

Re: Newly diagnosed today

Posted: Wed Dec 11, 2013 6:39 pm
by Cbridgeman
I decided on Rebif. The nurse trains me on injecting next week. Wish me luck :)

Re: Newly diagnosed today

Posted: Thu Dec 12, 2013 1:24 am
by NHE
Cbridgeman wrote:I decided on Rebif. The nurse trains me on injecting next week. Wish me luck :)
To help combat the side effects of interferon-beta, try taking some ibuprofen about an hour before your shot and then about 4 hours afterwards. A little the next day, e.g., one 200 mg tablet, can also be helpful for clearing out the lingering effects from the interferon-beta.

Re: Newly diagnosed today

Posted: Thu Dec 12, 2013 10:37 am
by Kronk
MarkLavelle wrote:You can listen to the conspiracy theorists and the like, or you can take a chance on the best modern medicine currently has to offer. Unfortunately (in terms of quality of advice), you have posted in the land of conspiracy theorists and amateur scientists.

There is nothing wrong with diets, etc., other than the fact that no one has found a way to do rigorous diet science. No one seriously doubts that eliminating junk and sticking to 'whole' foods is good for you, but no one can prove that any particular diet is particularly good for MS, either.

I may be too conservative, but I use Copaxone because it has been shown to reduce the frequency of relapses and it has the least serious side effects. In my particular case, the fact that Copaxone is not an immunosuppressant was also a factor.
I agree with this individual 100%. All the DMDs have been proven to reduce the frequency of relapses but none claim to cure or prevent the progression of the disease. So weigh it with that in mind, do you want to take a drug and deal with possible side effects, or have more frequent relapses. I do a swank diet, copaxone, LDN, and tinker with various supplements. Basically everything and anything that has some scientific evidence behind it I will give a try.

It is important to note many people live long, healthy, happy lives with MS. I was shook to the core when I was diagnosed as it came out of the blue with only a couple minor numbness episodes but MRI showed 9 active lesions on brain and spine. Took me many months to come out of my dark place and realise that I could be one of the people that avoids disability. Keep hope alive.