HELP all you MSers

[Victorian1975]

I go tomorrow for my final results on all my MS testing.  I know already my Neuro is going to want to start me on meds.  My question is this.  Once I start on the meds, will my symptoms go away.  Will I feel better?   I have felt really rotten with fatique, muscle pain, joint pain and numbness here and there since June.  It takes everything I have to go to work each day.  I come home exhausted.  I just want to feel like me again. I am terrified to start on these meds.  I have heard about so many side effects.   Then everything I read, it says the meds DO NOT slow the progression down just prevents as many relapses and hopefully less development of lesions.   If my doctor tells me he thinks it is MS, I don't know if I should start the meds or go for a second opinion.  All I know is I feel rotten and I just want to feel good again.

I need to hear from some of you who have been on these meds and tell me your thoughts
Cathy

[kwarendorf]

Hi Victorian -

As others here have said, the disease modifying drugs are not meant to address current symptoms. Symptoms tend to be caused by inflammation and the inflammation can be addressed by steroids.

My last relapse, the one that lead to my diagnosis, was a year ago. I was given a 5 day course of IV Solumedrol. This was followed by a 12 day oral taper. The steroids were like a wonder drug. My symptoms began to retreat almost immediately. I had no side effects from the steroids.

As far as DMD's go, I started Tysabri last November. I've had 10 monthly infusions. In that time I have had no side effects and no further relapses.

Kyle

[sllowe]

Sorry, for got to answer one of your questions.....

I've only been on Rebif since dx in 2007. It's one of  interferons (betaseron, avonex). It's served me well. My 1st year was the worse with the disease, and while I'm not where I was pre-07, I'm so much better than then. I attribute this to the medication, and coping mechanisms learned along the way. Hope this helps.
-Shell

[sllowe]

HI Victorian,

Nice to meet you :)  The meds may not impact what you experiencing right away. Typically fatigue is at it's strongest during an attack, then you may feel it lift with time.

The meds are not designed specifically to affect those symptoms related to MS, i.e., fatigue, spasms, cog fog, and spasticity (to name just a few), rather they modulate the immune system in an attempt to stop the break in the blood brain barrier which is why we experience attacks in the first place. The traditional meds work outside the blood brain barrier - it's quite fascinating actually.

So, ultimately, what you want by use of a DMD is fewer attacks, delays in disability and progression. Each DMD has shown to do this. While not in every MSer, but in some. It's prevention we cannot afford to miss.

In early phases of MS, the disease is very inflammatory, and MSers experience the relapsing remitting all the literature speaks about. It's this phase where the DMDs have show best results.

In secondary phases they are less effective. Please know what you are experiencing now can get better. It's hard to believe that when you are in the thick of it like you are now. Best thing you can do is get through each day by grately changing up your routine and lifestyle. You will have to give into the fatigue it's just not possible to get through it. But, also push when you feel you can.

Thank you so much for joining us - I hope we can be a source of information and support for you. You ask questions that are so important that most want to know. Thank you for posting yours :)
-shell

[Victorian1975]

Thanks Alex for you information and encouragement.  Funny I have so looked forward to this appointment thinking it would never get here and now that today has arrived, I feel very anxious about it.   Good luck to you and God Bless you

[HVAC]

The DMDs work on slowing progression not symptoms. There are medications for symptoms such as fatigue. The DMDs are not fun but they are not as scary as other drugs. They make this thing real like insulin make diabetes real.

There are two things in MS inflammation and nerve damage. If your symptoms are caused by inflammation the can come an go as the inflammation subsides. No one can tell which is which.

Progression and nerve damage can occur with out symptoms so it is important to get on and stay on a DMD if you can. Since they have been around people are living active lives longer.

No two cases of MS are the same and you may not get all the symptoms it juts depends on where the damage is in your body. I have had MS for 47 years and I am still very active. I just got hit with cancer and I am going horseback riding between chemos tomorrow. I am very weak but for me attitude goes a long way. My most limiting factor is myself. I can't do what I once did but I find new things to do. It is an adventure.

Alex

[Victorian1975]

Thanks so much for you kind words.  I guess there is a part of me that thinks if I take the meds then that means I REALLY do have MS and I think I am still in denial.  I just keep thinking it has to be something else and the docs just have not found it.  
I am 55 years old and have spent my life diagnosing and treating patients and  you just never think that something like MS is going to happen to you especially at this age.
I am so afraid because of course I see the worst in my field and when I think of MS I think of all those patients I have seen and it scares the hell out of me.

[JaneK1975]

I was diagnosed last December and started Copaxone in early February. You are correct that there is no scientific proof that the DMD's reduce an individual's current symptoms. However, there are other meds that do, so if you are having trouble with your daily activities, you may want to talk to your neuro or PCP about getting help.

For me, I never took any prescription meds to control my symptoms, but I feel WAY better now than I did on the day I was diagnosed because time has passed and my flare has passed. I am in remission now, and I am ecstatic about it. I will be hoping the same happens for you, and it is very likely that it will.

The months during diagnosis are always difficult because there is so much unknown and typically we are suffering the most severe flare of our life when the diagnosis finally comes. Please know that things will get better. And in the meantime, we will be here for you.

Regarding the second opinion, I am a fan. I got a second even though I really knew in my heart I had MS. I just wanted another doc to look me over. The decision to start on a DMD is a personal one, but do keep in mind that science has proven that the earlier an MS'er starts on a DMD, the better off he/she will be in the long run.

Wishing you all the best,
Jane