Is copaxone making me worse?

I know that it can take 6 months or more for your body to begin to respond to Copaxone.  I know that it isn't going to make me better and that the best case scenario is that it will reduce my relapses by 33%.  What I didn't expect though, was to get worse.

I started injecting daily at the beginning of March.  I had a relapse in April and am now deep into yet another one.  When I started not feeling well 2 years ago I would be "off" for a couple of weeks and then almost normal for maybe 3 months.  My doctor said I was having more relapses than average.  He said I needed to start a DMD right away.  What I don't completely understand is what this means.  I went into a pretty bad relapse in February, started Copaxone, and then had 2 more only 5 weeks apart.  It seems like since this all started I'm just getting worse and worse and since starting the drugs they are barely separated by the mandatory month in between.

What does it mean if my relapses are coming more and more often.  They seem to include a new symptom with each one too, which is also very frightening.  I read that it is normal, on average, to have 1 relapse per year,  at this rate I could have about 9 this year alone.  Does this mean I am going to get worse quickly?  Does this mean I will probably lose more mobility sooner than average?  Does this mean I will transition to secondary anytime? 

I look for answers to this but they are vague.  What I have read is that every disease course is different for everyone so there's no clear way to know.  I have seen studies that show that the more relapses you have in the first 2 years after diagnosis the sooner you will have more advanced disability but then it always follows with 'this is not the case for everyone'.

I want another MRI, the last one on my brain was last August.  At that point it showed one new lesion since 6 months before that (I have over 14 total).  I had a spinal MRI in November which showed a couple of lesions there as well.  With having had 5 relapses since last August I wonder how many new lesions are there?  Apparently you can develop lesions even without a marked attack so it could be a lot.  Would this add to atrophy?  He already said that was measurable in me and was another reason to start DMD sooner than later.

As I type this I see that I already know half the answers here.  I know it's not great news that I'm having so many relapses.  I know that I won't know how this is going to progress until it actually happens.  What I don't know is if starting these drugs has actually triggered something that is making things even worse?  Does anyone know if this is possible?  I would really appreciate any comments or feedback from people who are taking or have taken Copaxone on this one.

Talk soon

Paperwork, paperwork, paperwork (and a nice dose of disclosure)

Through my employer I am entitled to a critical illness benefit.  There is a handful of diseases that this benefit applies to and this is one of them.  I'm not sure how I feel about that to be honest.  I mean, this being on the list of diseases that suck so bad you deserve a payout just adds to the reality that this is not a small thing.

It is a descent lump sum payment.  It is meant to be there for me when I need to purchase assistive devices, have modifications made to my home, need a caregiver or can't work for a while.  Again, all scary thoughts for me.  I suppose I should feel fortunate to have this kind of insurance as I'm sure there are many who don't.

I have to apply for this now because you have a limited time from diagnosis to apply or you cannot receive the benefit, I believe it's 12 months.  This meant I had to tell my employer.  I had been hoping to put this off for quite a while longer.  If I wait though, I'm out of luck.  It seems silly to me that with a critical illness that isn't going anywhere they put such a short claim allowance period (I guess it gets them out of quite a few payouts). 

I contacted my HR department and they said that they could not initiate the claim without disclosure of the reason for it, I had been hoping I would be able to deal with the insurance company directly.  Follow this call with a very personal and terrifying conversation with my regional director (boss) and the process has begun.  Another very big life change.  I have worked hard to reach where I am and I had planned to continue to climb within the company.  I can't help but worry about how this has likely changed senior leaderships ideas of my future growth with them.

Anyhow, what's done is done.  So onto the paperwork!  HOLY PAPERWORK.  I received two separate sets of claim forms.  The first twelve pages long and the second eight.  I have to have my GP fill out four of these pages, the rest are special just for me.  The questions request incredible detail and specifics.  Now, please bare in mind, I can't remember who I just spoke to on the phone five minutes ago half the time, yet I'm supposed to know the 'exact' date of which my symptoms began.  How in God's name would someone with MS know the first day their symptoms began?  Ummm, could have been when the pleasant bouts of irregularity started 6 years ago, could have been when I felt so tired I was sure I had mono 4 years ago, could have been when I started tripping up escalators and missing steps which has been on and off for years.  I don't have the slightest clue on what exact date this started, so I've decided to go with when I started getting dizzy in 2011 and just copy my doctors work.  Honestly, the people who generate these forms must not know much about MS.

Then, they want copies of all relevant tests and results.  They want dates that you have visited the emergency room and what doctor treated you there.  They want your date of diagnosis.  They want to know what feels like a gazillion pages of everything, which would be just fine with me if I could only remember all the answers.

Oh well, like I mentioned earlier, I'm going to copy my doctor's homework as much as I can.  I have had them print out two years of my medical files and tests so I can sift through them for answers and I've left a request with the hospital for any documents they may have.  I do believe this is going to take a while.

Hopefully I get it done by my deadline next January, LOL.

Talk soon