Is it going to get bad?

[littlelawbear]

Hi everyone.  Bit of background - I was diagnosed with Clinically Isolated Syndrome highly suggestive of MS in June 2011 after having partial transverse myelitis (right side went numbish from shoulder to hip, front and back.  Mostly resolved except for some residual weird sensation in my right hand up to mid-forearm).  No disability, no weakness, no problems with my legs, no cognitive problems.  MRI showed 7-8 supratentorial white matter lesions, including periventricular and in corpus callosum.  One lesion in spinal cord from C2-C4.  This was a true CIS for me - I do not remember having any symptoms before the numbness.  I was put on Copaxone right away (I took my first shot 19 days after diagnosis).

Three months later (October 2011) I had another MRI.  The lesions were still there but the spinal cord lesion had "decreased minimally in size".  By then my symptoms had resolved except for this residual sensory stuff in my right hand up to mid-forearm.  Most of the time I don't even notice it.  Well, the fatigue can be bothersome sometimes too.

My evoked potentials, including visual, were all normal. I had some eye pain and development of floaters in August 2011 but since I had no vision loss or change in colour saturation, the neuro and opthamologist highly doubt that I had optic neuritis.

According to my neuro, I'm doing exceptionally well.  The neuto still can't diagnose me with clinically definite MS - he says that he doesn't have enough evidence yet.  Which is great news...right?

Honestly, I'm wondering when things are going to get bad.  I'm expecting that it's going to happen.  For some reason, I just can't seem to accept that I'm doing quite well.  I know that it's early days in my MS journey, but I can't seem to enjoy things anymore because I'm just expecting to wake up one day and realize that I'm a mess.  Guys, does MS always get bad?  And how long does it take to get there?

Thanks so much.  I know it's an odd question but I'd appreciate some feedback from your own personal experiences.  

[kwarendorf]

" I just sat there listening to their stories and chastising myself for worrying so much about my teeny-tiny sensory problem."

I would advise against this :-) You have CIS/MS. Your CIS/MS is going to be different from everyone else's CIS/MS. It will not be as bad as some and it may be worse than others. But it's your CIS/MS.

It's hard not to compare yourself to others in our boat. I know I did/do. But I try not to feel guilty about the fact that my MS currently causes me any undue difficulty. We are both new to this stuff and have far more questions than answers. Don't be afraid to ask questions simply because your doing pretty well :-)

[Lulu54]

Patient support groups are good for some but not so good for others.  That's why they come in many forms, such as the one here.

I go to a lot of pharma sponsored MS talks and MS meetings and find that the people around me are at all different stages of living with MS.  It bothered me at first, much like you thinking that my complaints are small.  There is no rhyme or reason to this disease and it sounds like you already know that.

I'm glad you are talking to us - we'll definitely listen, even if you want to complain about "little" things - there are no such things as little when it involves yourself and you have to stop comparing yourself to others.  Your MS is yours, and yours alone.

So talk away!
Lulu

[littlelawbear]

Wow - you guys are awesome.  Thank you so much for your comments.

I'm having a tough time figuring out how to feel about all of this.  I went to a MS support group in my area and I don't think I'm going to do that again for a while.  So many people there had been disabled by this monster of a disease and they are suffering so much.  I just sat there listening to their stories and chastising myself for worrying so much about my teeny-tiny sensory problem.  I had things to say, but I didn't say them because I didn't feel entitled to complain around people who had it so much worse than I did.

I appreciate being able to talk to you guys.  Thanks again!  :)

[JaneK1975]

I can relate so much to what you wrote. I have these same fears. I think everyone in this forum has them. They are completely natural.

I was diagnosed with MS last month, and I'm still dealing with the fear that someday it will get really bad. But I've also learned that, for me, I can calm those fears a little bit by slowing down, taking a deep breath, and reminding myself that I've made it through 36 years with good health.

Now that I know I have MS, I can identify three relapses (2004, 2008, and 2011). None of my relapses have disabled me. I'm going to say that again, as much to remind myself as to remind you. NONE OF MY RELAPSES HAVE DISABLED ME.

Like Kwarendorf, I work, I ride my bike, and I lead a completely normal life. I plan to keep it that way by taking my Copaxone, eating right, and exercising.

I hope what I've said has given you some consolation. I don't think the fear we have will ever go away completely. But I think we can learn to live with it.

Best wishes,
Jane

[kwarendorf]

For many, MS does not have to get bad and it does not have to control our lives. You are in a really good place. The CIS diagnosis means this was your first episode and you caught it! The Copaxone is designed to stop it in its tracks. In theory this should prevent CIS from ripening into MS.

But even if it does morph in MS it doesn't mean the end of the world :-) My MS life started from the other end of the time line. I had my first episode 20 years ago which went undiagnosed. I was fine for 18 years until relapse #2, also undiagnosed. Then this past summer Relapse # 3 which was diagnosed. By that time I "skipped" RRMS and went straight to secondary progressive MS. And guess what? I'm OK!

I have virtually no limitations. I go to work every day, cook, ride bicycles, travel...There are lots of us with MS that are just fine :-)

[sllowe]

Hi there!

I posted a link to a discussion on why take medicine if I feel well. It explains alot. I'll bump that for you because I think you'll be able to appreciate it.

I have to give a big hand to your neuro who put you on disease modifier right away. They do have the potential to delay, or out right halt further progression to MS. Especially so when you are treated early.

Since everyone is different, time will tell your course. If you are feeling well - just go for it! Do those things you love, and live your life to the fullest :)

We are fighting this disease together, so lean on us, and thank you for trusting us with your thoughts :)
-shell

[Lulu54]

You have sure laid it out there in a great way - this is what so many of us think when we are first diagnosed.

The good news here is the disease is not the same it was 20+ years ago.  There are earlier diagnosis such as yours with CIS, there are drugs to delay and even stop progression like your copaxone, and something like 85% of peoplewith RRMS will remain ambulatory not needing any help to walk or use a wheelchair.

You have done the best thing for yourself - getting on treatment and staying on it.  Don't be lulled into a false sense of security that you are well and can do without it.  You just don't know.

Living with these questions is tough - I hope you'll stick around here and learn more.  HAving knowledge on your side is so important in this battle.

best,
lulu

[heartfelt77]

Hello, Welcome my name is misty.  Sorry to hear about this its a very hard question.  But, I wanted to reply to your post.  In my opinion it would depend on what type of ms u have and what stage its in.  Do u have a good neuro one that you trust and can confide in because I think its means so much when people do have good doctors that truly care.

Are u still on a Dmd?  If you were and know your not but it was helping you why would your neuro take u off of it.  That's alittle scary.  I think if I seen that a medication was making things better I would demand to stay on it.  Because, obviously it was working for you and slowly everything down.

In my opinion we r all afraid of the unknown.  But, I believe we need to make the best of it.  And, when our time is up its up....    Please, don't think about the negative starting thinking about all of the positive things in life.

Just say to yourself I'm going to take one day at a time. And, whatever comes my way I can deal with it..   I can completely understand your thoughts though.  As I lay in this bed almost day in and day out I think what's going to happen next..  I say every morning thank you god for giving me another day.  And, give me the strengh to enjoy life with my family.

I'm not going to spreach but, even though we r all suffering in very similar ways I still believe he has a plan for everyone life.  

I'm not a holy roller but, I do believe in god and know he has seen me through so much...  

Sending u my support and hugs.  Just know we are here for you.

Stay positive I believe its very important when fighting.  And, stay strong.

U can and will be ok.....  Believe in yourself.  Don't think about what could happen think about how u can make it better for you.

Take care.....   I hope this help maybe alittle and others will come on and help u too.    Your doctors are going to try and keep you stable also.  Hang in there.

It's ok to be afraid I'm afraid also....   Your not alone...   Fight, fight, fight

Misty