Wednesday, August 21, 2013

Okay, starting to worry now...

So, last posting was a true relapse.  Yep, another one.  That's one in February, one in April, one in June and another one in August.  They last a couple of weeks only (thank God), give me about a 5-6 week break and BAM...hit me with another.  I have called my neuro and left a message for each one just as I was told to.  I had IV steroids for the one in April, rode out the next one (by my choice), waited until the end to call on my latest.  This time the office called right back to inform me that my neuro wanted to see me the next day at noon.
Now, my neuro requires a pre-book for appointments of about 3 months.  You just can't get anything sooner.  This being the next day and at noon told me that not only was this obviously squeezed in on his lunch but also more serious than I realized.
When I got there we went over my last 3 relapses to try to decide if they were all true ones.  He said he was very concerned because I am continuing to not only have too many but they are actually getting even more frequent.  I am on Copaxone and have been for about 5 1/2 months.
He did his regular poking and prodding.  Babinski thingy is there on my left foot, right foot is not responsive either way.  Told me to jump on one foot.  I had to grab the wall and got like NO height.  This surprised even me because I used to be super athletic and had no idea I couldn't do this.  Really, who jumps up and down on one foot for no reason?  Then he checked this thing where I lie on my back and put my legs straight up in the air.  My feet slowly crossed over each other.  I thought nothing of it, he asked me to try not to cross them.  I uncrossed them and watched them all on their own go back to crossed....weird thing to see by the way when you don't intentionally decide to do it.  Apparently this isn't such a great thing either based on his face and note taking.
He said he thinks it would be wise to see an MS specialist at this point.  He said that I might need to consider Tysabri or Gilenya?  I don't know much about these but he said they both are a bit scary and really last resort.  One has a 1 in 10,000 chance of triggering a brain infection that is usually fatal and one requires monitoring after your initial dose because your heart could stop.  Neither sound like a great plan to me at all.  I asked about the other DMT drugs and he said that the interferon based ones have the same results as copaxone for slowing progression and relapse rate and he doesn't believe they would be any more effective in my case.
Final decision was to do another MRI of both my spine and brain using some kind of die to see just what is going on.  Then, as he said, if there is no progression we can take a deep breath and relax...continue on Copaxone (which can take 6-9 months to reach full effectiveness) or if there is then it's off to the specialist armed with these to look at the option of the above mentioned "scary" ones.
This is all happening so fast.  When I was diagnosed I researched and researched and the only good thing seemed to be that this was a disease that usually had slow progression.  I thought I had like 10-15 years on Copaxone with reduced relapses before I would be looking at these kinds of options.
So now the wait begins.  MRI is not until October 3.  If my body stays on it's current schedule I should get until about mid to late September relapse free....can't wait.

Monday, August 5, 2013

Is this a relapse or not?

I find it hard to know if something is a true relapse or just another strange blip in this unpredictable disease.  I often can tell one's coming because without any specific symptoms, I generally feel crappy.  I feel more lightheaded than normal, more tired than normal, crankier than normal (if that's even possible lately).

I'm pretty new to this thing though and still never know for sure.  I'm supposed to call my neuro with every relapse so he can track my 'disease progress' but I don't want to call for stupid things or no reason.  I don't want to be that annoying patient.

So for the last 2 weeks I have been trying to decide exactly what the hell is going on.  I have a new least I think it's a symptom.  I have had painful goosebumps from the knee down to my ankle in my right leg only.  They come and go every few minutes and they hurt!  Along with that I had about 3 days straight of this electric crawling again from the knee down in the same leg that just made me want to rip my own leg off.  I also had the lovely return of the tightness around my shoulders and throat and my right arm full of pins and needles off and on.  I guess this is a relapse?

From what I understand, a relapse is something that occurs and lasts for at least 24 hours.  They have to be at least 4 weeks apart.  They do not always incorporate a new symptom, they may ONLY be a new symptom, or they may be a blend of many existing symptoms and additionally a new one.  It had only been 5 weeks since my last one finished when this began.

I guess it does sound like a relapse...but goosebumps?  Really?  I've never had them in only one part of my body, I've never had them when I'm not cold or emotional, so I guess it could have to do with my broken brain. 

Does anyone else have relapses this often?  I guess I should be thankful that they only last for a couple of weeks but I'm really scared by how often they seem to be coming now...if that's what these are.

Fingers crossed I'm just crazy because more relapses would mean more lesions and that's only the ones I would know about.  From what I've researched, you can develop new lesions in more 'silent' parts of your brain and not even be aware it's happened.  That makes me seriously concerned about what they may find on my next MRI, whenever that will be.

Well, I see my neuro at the end of the month so I guess I just wait until then.

I don't think there is actually anyone out there reading these posts, but on the off chance there is...

Talk soon