Recent MS diagnosis

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Hounds
Regular Member


Date Joined Jul 2014
Total Posts : 30
   Posted 7/29/2014 12:54 PM (GMT -6)   
Hi all,
 
I'm a 45 y/o female.  In March, I had a bout with optic neuritis. I went from 20/20 vision to 20/70 in a matter of days.  Brain and spine scans confirmed lesions in both.  Fast forward to last week, the neurologist prescribed Copaxone, after a second MRI and continuing neuro symptoms since that first bout.  The good news is that my vision is back to normal!  I've also had 3 courses of Solumedrol since March, with the most recent being last week.  
 
I'll be starting the 20mg Copaxone probably later this week, or whenever it is delivered and I'm trained on how to give myself the injections.   I'm getting nervous about the daily injections and the side effects but I'm also looking forward to start feeling like a human again.  Does any one have any advice or insights on what I should expect over the next couple of weeks, as I get in the routine of the injections or what I can expect and not expect with this medication? 
 
 
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 7/30/2014 10:13 AM (GMT -6)   
Hi Hounds,

Welcome! I'm sorry you find yourself in this situation. I've been on copaxone for nearly 8 years. I have found it to be very manageable. I hope you do as well. Be sure you are trained in both injection techniques; manual and auto-ject. Believe it or not, the auto-ject kind of made me nervous. I have always injected manually and it hasn't been an issue.

Knowing how to inject both ways will give you more confidence in this. At first the side effects will seem not so nice. There will be pain and itching at the site. You will likely have a welt. I have gotten used to all that. I don't really think about it anymore. It took a couple of months to get used to the side effects. I got used doing injections in about a week.

It's part of the routine now. I inject just out of the shower in the morning. I'm lazy about the alcohol swab. I just wash well with soap and water.

Look into a BD safe clip. It's a handy little gadget that removes and stores the needle. In my state (CA) I can toss used syringes in the trash as long as the needle has been removed. When the BD safe clip is full, I convince my doctor to add it to his sharps container.

I'm so glad your vision has returned. Do you have any other symptoms? Be sure to get your bone density checked regularly. The solumedrol can mess with that.

I was diagnosed at 43. I have lots of minor issues but I'm happy to report that my progression has been slow and minimal. I still work full time and have a very full and happy life. Please keep hopeful.

There is an outstanding book available. It's called "MS and your feelings." It's by Allison shadday. You might look into that. It helped me a great deal.

Please post as you like. Ask any questions you may have or just vent. Again, welcome to healingwell.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Hounds
Regular Member


Date Joined Jul 2014
Total Posts : 30
   Posted 7/30/2014 12:28 PM (GMT -6)   
Thank you for the Welcome and your experiences. I think it is just the unknown of the injections that has me a little freaked out but I do have a nurse coming to the house for training of the proper techniques, so that should help. I have a cousin who is also on daily copaxone, so she has offered to help me along if I get too nervous! :)

I do have other symptoms, the electric current feeling through my right arm. Prior to the last solumedrol infusion, I had what people tell me was the MS hug in my whole right arm and the reflexes were pretty poor, which is why the second MRI of the brain and neck were ordered. The pain in the right arm is now gone but the electric current sensation is still there. I can deal with that :) Some of the other symptoms are the extreme fatigue, that "drunk" walk and few other mild ones that I probably wouldn't even notice if it weren't for this dx.

It was a long 4 four months of tests, steriods, and more tests before I finally got the diagnosis but I think I'm handling it the best that I can. I just want to start the meds to stop the progression of my current symptoms and limit any future relapses. Don't worry, I expect to have relapses I just don't want any for a little while, if that makes sense :) I have been working full time (plus) since my first "episode" in March, which most people think that I'm crazy for doing so but it keeps me occupied. I've been told that I am handling this dx very well and what I keep telling people is that it could be so much worse and this is manageable, I just need to find what tools will help me best to manage.

Thanks for the reminder about the bone density. I will bring that up with my GP.

I'm sure I'll be around "venting" and asking questions as I start this journey.

(:
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/6/2014 7:55 AM (GMT -6)   
Hey there,
I'm 24 and I've had MS for 5 years. Ive been prescribed numerous MS medications until I found one that was effective for me, my issue with the self injecting meds is that it can take up to 6 months to show improvement so I would go into flare ups. I also would get big welts and developed scar tissue at the injection sights which wasn't very comfortable. After my last hospital stay(about 2 years ago) I was prescribed Tysabri, it's an infusion (IV) you get every 4 weeks. By the 2nd infusion my MS was drastically better and I haven't had a flare up since. I would recommend researching all of your options because they just a pill out for MS (haven't tried it) If you're experiencing numbness/tingling or lack of coordination with your hands, the auto injector might be a bit difficult. I hope this helps, sorry about your MS. Just stay positive and hopeful because those negative emotions also weigh on your MS.

Peggy Olson
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/7/2014 11:07 AM (GMT -6)   
Hello, Hounds:

I just celebrated the five-year anniversary of my MS diagnosis. I had dealt with symptoms for many years before that, so I know the relief and anxiety of having the MS diagnosis finally confirmed.

My doctor prescribed Copaxone as soon as I was diagnosed. Fortunately, I haven't had a relapse since. (Fingers crossed.) I take the 20 mg syringe every evening, using the AutoEject pen. The pen helps me deal with the daily injection, since I don't really see the needle (until I'm done with it). I've established an evening routine around my injection, but it doesn't rule my life. That's important!

My only side effects have been irritation at the injection sites and an occasional flushing right after the injection. (You've probably read about this. It's happened to me about four times and there is no lingering effect.)

The best advice I can give is to allow yourself lots of time to heat the injection site beforehand. It makes a world of difference. If the site is sufficiently heated (at least 10 minutes or more), the injection is so much easier. There's also reduced irritation.

In the beginning, you'll experience trial and error regarding what does and doesn't work for you. Stick with it and be adaptable. It will work out for you!

Shared Solutions (Copaxone's resourse) is wonderful and I highly recommend calling them for any questions - no matter how small. Yearly visits from their nurse is also very helpful. And the National MS Society provides great info and resources as well.

It can be very scary to face a chronic disease, especially one as unpredictable as MS. Seek support from family, trusted friends and positive resources. Avoid negative forums and comments, because a positive attitude is SO very important! Good luck.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/7/2014 6:25 PM (GMT -6)   
Hi Peggy!

Welcome to the board. I'm so glad you're here. Your post is wonderful and so helpful! Thank you for posting!!!! I'm glad to hear the copaxone is working for you! Please post often and share your experiences.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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