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RUserious
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Date Joined Dec 2010
Total Posts : 6
   Posted 12/29/2010 11:40 AM (GMT -6)   
I have been diagnosed with Fibromyalgia and am in the process of finding out if I have MS-my Rheumatologist and Neurologist both believe that is what it is and am waiting to be seen by an MS specialist.  My neurologist wants me to go ahead and start on the Copaxone and I don't want another medication.  I have been on Gabapentin, Tramadol, and Baclofen for 2 years now and they just raised my dosage of Gabapentin.  I am concerned that all this medication is causing alot of the symptoms I am experiencing, but my doctors say no.  I have tried to go off of them, but the withdrawl symptoms are horrible and the pain is unbearable-has anyone else dealt with this?  I feel like noone around me understands it.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3565
   Posted 12/29/2010 11:00 PM (GMT -6)   
I am sorry to hear about your probable MS diagnosis.  I am surprised that your neurologist wants you to start copaxone already.  Copaxone is quite expensive and most insurance companies are going to insist on a definite diagnosis. 
 
If you do decide to start copaxone, rest assured, that most people find its side effects very managable.  I am sure you already know this, but copaxone is a daily injection.  The side effects are a lump at injection site that can be hot and itchy for a few hours.  There are a few other rare reactions that can some people experience.  I have been on Copaxone for 4 and a half years without issue.  It has been real easy for me.
 
Best of luck to you.

MSVet
New Member


Date Joined Dec 2010
Total Posts : 2
   Posted 12/30/2010 12:25 AM (GMT -6)   
I agree with the above poster. It's highly unusual your neuro would want to start you on meds before an official diagnosis.  Most insurance companies won't approve the meds until there is clinicial evidence.  Even then there are often fights.
 
If you do end up with a diagnosis of MS you'll want to do your research. There are a number of medications available not just copaxone. All have their side effects. 
I was diagnosed with relapsing-remitting MS in 2003. My personal philosophy of MS is simple: MS is a life sentence, but that doesn't mean I'm going to stop living.

RUserious
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/30/2010 9:05 AM (GMT -6)   
Thanks for your replies, guys.  I thought it seemed strange that he would want me to start on it already.  His reasoning was that I might not get into the MS specialist for 6 months and the Copaxone would take a few months to really get into my system and in that time I could have another attack, but if that is the case then why haven't they diagnosed me with it yet?  I'm very confused by all this and really not trying to take another medication (especially an immune suppressant) if it is not necessary.   Any advise anyone can give me is helpful.  Thanks.--How have you all been doing on your medications?  Do you take pain medications or muscle relaxers?  Have you had any long term effects from them? 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 12/30/2010 2:07 PM (GMT -6)   
Hi again.  I take adderall everyday as a mood stabilizer and to help with focus and concentration (like MS induced ADD).  I take baclofen as needed.  I ignore all my numbness and tingling (you do get used to if after a while).  I take klonopin as needed for my restless leg/nerve pain that I can get in the evenings.  I am lucky that I don't have to take pain meds or spasticity meds on a regular basis and only as needed. 
 
Copaxone is considered an immune modifier and not an immune suppressant.  I haven't not had any problems with getting infections or getting over infections.  I get an occasional cold, and it isn't any worse than before I started taking copaxone.  My immune health seems fine in that way.
 
I do take several supplements that I feel are important to my MS.  I take D3 (liquid cap) everyday (5,000 IU)  I also take 250 mg of niacin (I don't take the non-flush version...it can be hard on your liver) everyday.  I take a basic calcium, magnesium, zinc combo (trader joes) and I take spirulina for trace minerals.  The most important one would be that D3, most MSers are low on this one.  I insist that my teenage boys take the D3 as well and I have noticed that they never get sick now. 
 
Please know that I am sharing my knowledge and experience with copaxone....but I am not pitching it!  As MSvet has said, there are several MS meds out there that are considered successful.  The key is finding which one will work for you.  Which one will you tolerate and stick with etc.  Google; Betaseron, Copaxone, Rebif, Avonex.  Those are the main four, but there is also Tysabri (considered only if you fail other meds) and Gilenya the only pill form currently out.
 
Please remember, NONE of the current MS meds stop flares (attacks, exacerbations, whatever you want to call them).  One of my biggest flares came 7 months after starting copaxone.  It was frightening and I was convinced that the copaxone wasn't working.  I stuck with it and have had yet another flare but over-all I am doing very well.  I have good mobility and I still work full time.
 
Also, many people opt for no treatment.  They work hard at lifestyle changes and supplements.  The idea of lifestyle changes is very important for MSers.  You can't just count on meds.  You will need to eat as healthy a diet as you can stick with and exercise is critical.  Aerobic exercise is known for being an excellent way to create an enviromnent of low/no inflammation.  Stretching and strength training of any sort are helpful in keeping strong and helping with spasticity.  I battle some spasticity in my left leg with near constant stretching.  I will quickly stretch several times a day.
 
Wow, sorry!  This is a bit long!  I hope it helps.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 12/30/2010 2:09 PM (GMT -6)   
MSVet, thanks for joining in and sharing your experiences and expertise.  Your posts are appreciated!

RUserious
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/30/2010 6:52 PM (GMT -6)   
Any help I can get is much appreciated! Thank you so much for the info!  I didn't know that Copaxone is not an immune suppressant.  I definately need to read more into it.  I have been excersing, stretching and taking supplements, but I'm not sure I know what D3 is-can you tell me?  Thanks again for your help!  I hope you are doing well-it sounds like you have been dealing with this for awhile.

Post Edited (RUserious) : 12/30/2010 6:17:35 PM (GMT-7)


RUserious
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/30/2010 9:06 PM (GMT -6)   
To Gretchen1 and MSVet:  I know I said it before, but I really just wanted to say thanks again for helping me.  I am new to all this and quite frankly I am really worried about what is to come.  I have been on another site before that I got a really rude and condescending comment to my question so I really appreciate you all being so nice!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 12/31/2010 12:24 AM (GMT -6)   
Hey again, RUserious,
 
Below is a link to an article that hopefully explains the importance of D3 and MS.  Vitamin D3 is actually a hormone that occurs in the human body.  It is created via the skin after exposure to sun.  D3 is critical for optimal brain function.  It is the one supplement that most neurologist will encourage an MSer to take on a regular basis.  It is an inexpensive supplement and available just about everywhere.  Just make sure it is D3.  The recommended daily dose is way too low for MSers.  I think they say 400 IU.  I take 5,000 IU a day.  Since it is a naturally occuring hormone, there is little chance of taking to much.  A day at the beach (lots of sun, lots of skin exposed) can cause the body to make/receive 50,000 IU in a day.  It is very safe.  Google it.  It's also nicknamed the antibiotic vitamin as it can really increase immune function and prevent infection. 
 
How long will it be before you see the MS specialist?
 

RUserious
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/31/2010 8:58 AM (GMT -6)   
Gretchen1-I'm not sure when I will see the specialist.  They need a copy of my brain MRI disk before they will schedule me and I just mailed it.  So we will see.  Thanks for the info on the site-I'll check it out. 
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