Aa
Looking for a little guidance
Hello!
My name is Anna and I am new to this forum. I am a 25 year old nurse from the Midwest. I recently had an MRI done due to some headaches I have been having and incidentally, a few lesions were found on my brain. I then had the full work up- EVP, LP, and spinal MRI. While my spinal MRI came back negative, there was evidence of "O-Bands" (result of protein breakdown) in my spinal fluid. From there, my neurologist diagnosed me with "probable" MS and suggested that I start a medication regimen as to slow the progression of the disease. I will be starting Copaxone next week. Again, to my recollection I've never had any MS symptoms, this was merely an incidental finding.
Now, I am starting my grieving process. I'm starting to wonder what-if and am having some anxiety about the unknown. I'm worried about my first flare-up and what to expect. Will I ever have a flare-up? I know that no one has a crystal ball and that this question simply cannot be answered. I am just looking for some insight and seeing if anyone here has a similar situation that could shed a little light my way. In addition, has anyone had any POSITIVE experiences with Copaxone as far as keeping flare ups at bay? Thanks!
My name is Anna and I am new to this forum. I am a 25 year old nurse from the Midwest. I recently had an MRI done due to some headaches I have been having and incidentally, a few lesions were found on my brain. I then had the full work up- EVP, LP, and spinal MRI. While my spinal MRI came back negative, there was evidence of "O-Bands" (result of protein breakdown) in my spinal fluid. From there, my neurologist diagnosed me with "probable" MS and suggested that I start a medication regimen as to slow the progression of the disease. I will be starting Copaxone next week. Again, to my recollection I've never had any MS symptoms, this was merely an incidental finding.
Now, I am starting my grieving process. I'm starting to wonder what-if and am having some anxiety about the unknown. I'm worried about my first flare-up and what to expect. Will I ever have a flare-up? I know that no one has a crystal ball and that this question simply cannot be answered. I am just looking for some insight and seeing if anyone here has a similar situation that could shed a little light my way. In addition, has anyone had any POSITIVE experiences with Copaxone as far as keeping flare ups at bay? Thanks!
Hi Ann I am and is going through the same thing u r going through when it comes to feelings. Its up and down for me because I was recently diagnosed with MS. I'm a new member as well and all this is new to me but my symptoms were different I went completely blind in my right eye but it started with the headaches and over the counter meds would only help a little, it would go and come back. I started with Copaxone everyday than 3 times a week until my neurologist told me he found more legions in another area that wasn't there before. He told me tysabri was the best option but it lower my immune system so now I can get sick quicker. I don't know this is all new to me. I have a neurologist but he's not giving me all the information I leave with more questions every time so as of right now I'm looking for another neurologist to be very clear with me before this gets worst, my anxiety is at a high and insomnia because I can't sleep.
Thank you all for your responses. I've had so many highs and lows the past week that I can't tell if I'm relieved, sad, happy, scared... You get it. I do know that talking to others who have been in my shoes is very helpful. I know that I have to "rip the bandaid off" and just realize that I have no choice but to move on with life and take care of myself to the best of my ability. I will continue to use this forum as an outlet and I hope that I can make someone a little more at ease like you all did for me.
Hi Anna,
Each case of MS is different. My MS was found by my GP during a yearly physical. I found out later I had a lot of MS symptoms but did not know they were abnormal. It is hard to get the diagnosis. It took me two years to really accept it. I went through all kinds of emotions. I waited for the shoe to drop and have all the symptoms I had heard of. I am odd because I had all my attacks in childhood. I now have a slow decline. I barely notice it. My legs do not work as well as they used to. My cognitive is harder all the time. Others do not notice or I make a joke about it.
It is good your Doctor is so proactive I had to wait two years with all my tests pointing to MS.
I let myself feel whatever I feel. I stopped beating up on myself. It is not my fault I have MS. I did in the beginning. I was angry at the cost of MS.
Each case of MS is different. My MS was found by my GP during a yearly physical. I found out later I had a lot of MS symptoms but did not know they were abnormal. It is hard to get the diagnosis. It took me two years to really accept it. I went through all kinds of emotions. I waited for the shoe to drop and have all the symptoms I had heard of. I am odd because I had all my attacks in childhood. I now have a slow decline. I barely notice it. My legs do not work as well as they used to. My cognitive is harder all the time. Others do not notice or I make a joke about it.
It is good your Doctor is so proactive I had to wait two years with all my tests pointing to MS.
I let myself feel whatever I feel. I stopped beating up on myself. It is not my fault I have MS. I did in the beginning. I was angry at the cost of MS.
Hi and welcome. TLC has given you some very good info.
I'm simply adding to that by saying that it is not possible to know whether a given drug is being effective for a given patient. That's because we can't prove a negative, meaning we can't know whether or not the person would have attacks, or more attacks or worse attacks, without the drug or with some other drug. Your neurologist will monitor developments through MRIs and office examinations, and also through symptoms you report, and that is some gauge of effectiveness, but keep in mind that MRI lesions and symptoms do not necessarily correlate.
On the other hand, we can be reasonably sure a given drug is NOT being effective if there are attacks or new attacks at a level your doctor feels is unacceptable. That would be something to be discussed when or if.
Note that what I wrote above applies to a given individual taking a given drug. But considered overall, for many thousands of patients over years of trials and subsequent years of prescriptions, the MS treatment drugs have been demonstrated to be effective, statistically speaking. They all do reduce the severity of MS. Copaxone has a long and positive track record, and many patients are sticking with it even though newer drugs are available, several now in pill form. I'm one who switched to pills and am happy not to have to do injections, but that's just me. It's always possible to change treatments, depending on circumstances.
ess
I'm simply adding to that by saying that it is not possible to know whether a given drug is being effective for a given patient. That's because we can't prove a negative, meaning we can't know whether or not the person would have attacks, or more attacks or worse attacks, without the drug or with some other drug. Your neurologist will monitor developments through MRIs and office examinations, and also through symptoms you report, and that is some gauge of effectiveness, but keep in mind that MRI lesions and symptoms do not necessarily correlate.
On the other hand, we can be reasonably sure a given drug is NOT being effective if there are attacks or new attacks at a level your doctor feels is unacceptable. That would be something to be discussed when or if.
Note that what I wrote above applies to a given individual taking a given drug. But considered overall, for many thousands of patients over years of trials and subsequent years of prescriptions, the MS treatment drugs have been demonstrated to be effective, statistically speaking. They all do reduce the severity of MS. Copaxone has a long and positive track record, and many patients are sticking with it even though newer drugs are available, several now in pill form. I'm one who switched to pills and am happy not to have to do injections, but that's just me. It's always possible to change treatments, depending on circumstances.
ess
Hello Anna,
I am sorry to hear about your diagnosis. It's completely normal to be experiencing anxiety about your uncertain future.
Headaches can be a symptom of MS and I would imagine that if your headaches were severe enough or consistent enough for a doctor to order an MRI, yours might be related to your "probable" MS diagnosis.
You can have MS and can have it progress w/o any symptoms so it is wise for you to at least consider DMD's (disease modifying drugs) to help slow the progression.
I had my first MS symptoms of MS while I was in my 20's...numbness in my hip and leg. Not painful and honestly I thought I had overworked myself physically after buying and fixing up a new house. The neurologist did perform a bunch of test looking for MS but all were negative.
Fast forward 8 years and I woke with the same symptoms. Same results. Then 10 years later (I was in my 40's at this point) I woke with a lot more than numbness. Interestingly though, never a headache.
No two people will present with MS in the same way so no one here can tell you what a "flare" or "relapse" will be like or if you will ever have one. All you can do is what is within your control....take care of yourself, avoid stress, rest your body with sleep, eat a balanced diet, exercise, take a DMD if appropriate, see your doctor regularly, etc.
I have been on Copaxone since 2010 and other than some site reactions, I have had a good experience with it. Last year I switched to the 3 day week injections which I really like a lot better than daily. So far, no relapse and no change in my MRI or annual neuro exam.
You can lead a normal life with MS. No one can tell you what lies ahead but that was true before your diagnosis as well. Good luck!
Julie
I am sorry to hear about your diagnosis. It's completely normal to be experiencing anxiety about your uncertain future.
Headaches can be a symptom of MS and I would imagine that if your headaches were severe enough or consistent enough for a doctor to order an MRI, yours might be related to your "probable" MS diagnosis.
You can have MS and can have it progress w/o any symptoms so it is wise for you to at least consider DMD's (disease modifying drugs) to help slow the progression.
I had my first MS symptoms of MS while I was in my 20's...numbness in my hip and leg. Not painful and honestly I thought I had overworked myself physically after buying and fixing up a new house. The neurologist did perform a bunch of test looking for MS but all were negative.
Fast forward 8 years and I woke with the same symptoms. Same results. Then 10 years later (I was in my 40's at this point) I woke with a lot more than numbness. Interestingly though, never a headache.
No two people will present with MS in the same way so no one here can tell you what a "flare" or "relapse" will be like or if you will ever have one. All you can do is what is within your control....take care of yourself, avoid stress, rest your body with sleep, eat a balanced diet, exercise, take a DMD if appropriate, see your doctor regularly, etc.
I have been on Copaxone since 2010 and other than some site reactions, I have had a good experience with it. Last year I switched to the 3 day week injections which I really like a lot better than daily. So far, no relapse and no change in my MRI or annual neuro exam.
You can lead a normal life with MS. No one can tell you what lies ahead but that was true before your diagnosis as well. Good luck!
Julie
Welcome to the forum! I have no personal experience with Copaxone, but it has stood the test of time and has a strong safety profile. At one point it was, and maybe still is, the most commonly used DMD (although I think all the interferons combined have been slightly more used). You are wise to start a DMD early. All of them have side effects, but often they can be tolerated (they're usually far more tolerable than the disease itself) and/or mitigated.
You may never have a flare-up. I've had two since diagnosis in early 2004 (in summer 2004 and early 2006, each requiring three days of IV steroids), and the course of my disease has been relatively benign since then. I was also afraid of the unknown, but those fears have abated, and over time yours will too. We could suffer a nasty flare, but many other non-MS things could happen to us too, so all we can do is take care of ourselves and try to live our lives the way we want. Ask questions anytime!
You may never have a flare-up. I've had two since diagnosis in early 2004 (in summer 2004 and early 2006, each requiring three days of IV steroids), and the course of my disease has been relatively benign since then. I was also afraid of the unknown, but those fears have abated, and over time yours will too. We could suffer a nasty flare, but many other non-MS things could happen to us too, so all we can do is take care of ourselves and try to live our lives the way we want. Ask questions anytime!
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