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 symptom...at 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
Showing posts with label lesions. Show all posts
Showing posts with label lesions. Show all posts
Monday, August 5, 2013
Sunday, June 9, 2013
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
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
Thursday, April 11, 2013
At least I'm not crazy
January 11th, 2013. The day I learned I wasn't crazy. That's what I had pretty much decided I was. That or a hypochondriac. "You have anxiety, you have migraines, you have nothing wrong with you." This is what the first neuro told me. In fact, her opening sentence to me on our first visit was "you don't have MS". At that point I hadn't even thought I might, but boy was it good to know I definitely did not have that.
I had blood work upon blood work, I had ultrasounds on my heart and neck. I wore monitors with sticky pads all over my chest for 2 days. I was seriously tested. I was healthy, I was crazy. The right side of my face was not really numb, my right arm was not really numb, I was not dizzy almost all the time and my body absolutely did not feel like it weighed 500 lbs. I was fine. Oh, and the 14 lesions that were on my MRI? "They're just pinnacle...you have migraines. See your doctor for anxiety meds". Okay.
Fast forward a year and a half. Fast forward past 4 relapses and 2 trips to emergency as I thought I must be having a stroke or hit a new level of crazy. New MRI, 2 new lesions and holy crap, a positive lumbar puncture. Congrats...I am the proud owner of MS. But hey, at least I'm not crazy, right?
Anyway, here I am. I hear over and over that lot's of people have this, lot's of people live long, happy, healthy lives with this. Lot's of people don't even think about the fact they have MS. I know this, I believe this and someday, I'm sure I'll accept this. Right now though....I'm just pissed off.
I used to weight train, I used to do yoga, I used to jog. That was on top of working 60 hours a week, raising three boys and keeping up with cooking, cleaning and a 2 hour per day commute. Now, I work, nap and sleep. That's all I've got.
I miss me, I miss energy, I miss 2 years ago.
I assure you, this blog will not be like this all the time. I'm certain I will bitch and complain here and there but I'll do my best to keep it to a minimum.
More than anything, I just want to hear from others who are going through this. People who are newly diagnosed, people who have been for a while but remember what it was like when it was new and even people who want to tell me to quit whining and move on.
Talk again soon....
I had blood work upon blood work, I had ultrasounds on my heart and neck. I wore monitors with sticky pads all over my chest for 2 days. I was seriously tested. I was healthy, I was crazy. The right side of my face was not really numb, my right arm was not really numb, I was not dizzy almost all the time and my body absolutely did not feel like it weighed 500 lbs. I was fine. Oh, and the 14 lesions that were on my MRI? "They're just pinnacle...you have migraines. See your doctor for anxiety meds". Okay.
Fast forward a year and a half. Fast forward past 4 relapses and 2 trips to emergency as I thought I must be having a stroke or hit a new level of crazy. New MRI, 2 new lesions and holy crap, a positive lumbar puncture. Congrats...I am the proud owner of MS. But hey, at least I'm not crazy, right?
Anyway, here I am. I hear over and over that lot's of people have this, lot's of people live long, happy, healthy lives with this. Lot's of people don't even think about the fact they have MS. I know this, I believe this and someday, I'm sure I'll accept this. Right now though....I'm just pissed off.
I used to weight train, I used to do yoga, I used to jog. That was on top of working 60 hours a week, raising three boys and keeping up with cooking, cleaning and a 2 hour per day commute. Now, I work, nap and sleep. That's all I've got.
I miss me, I miss energy, I miss 2 years ago.
I assure you, this blog will not be like this all the time. I'm certain I will bitch and complain here and there but I'll do my best to keep it to a minimum.
More than anything, I just want to hear from others who are going through this. People who are newly diagnosed, people who have been for a while but remember what it was like when it was new and even people who want to tell me to quit whining and move on.
Talk again soon....
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