Recently, I have seen a number of posts asking for exact responses to unanswerable questions. Here are a few generic examples:
- Does this symptom mean I am in a flare?
- How long will this flare last?
- How long will it take me to recover from a flare?
- Should I stay on drug X?
- I don't trust big pharma. Can I go without medications and do just fine?
While these questions are all understandable, they do not reflect the unpredictability of the disease. Even so, most MS patients can understand how frustrating things are, especially for those in limbo or newly diagnosed.
Twenty people can start a flare on the same day. Ten can be treated by steroids and ten not be treated.
- There will be people that treat with steroids and fair better than others that did not have steroids. Likewise, there will be people that do not treat with steroids and fair better than others that did treat with steroids.
- There will be people in both camps that have complete remissions and others that have lingering or even permanent disability.
- Some people even go through a flare and never have symptoms. The symptoms can be subtle, or the lesions can be in unused parts of the brain. Undiagnosed people may start a flare and their medical teams never consider MS before the symptoms abate.
- We currently have no way to determine how any particular person will respond to any particular medication. Some people will do great on Drug X and others miserable on the same drug.
- With or without medications, some people will never experience another diagnosed flare up. With or without medications, some people will not have stable MS.
The great unknowns are part of the maddening nature of the beast. Here at MSWorld we do our best to help as many people as possible. For every post, there are a number of people with the same question, but never asked. We learn from each other. We also cry, laugh, celebrate and mourn with one another. That's why the "Patients Helping Patients" motto means so much to me and thousands of others.
We may never be able to answer your specific questions, but we hope to provide a safe environment for everyone to ask those questions. We hope that you find both sympathy and empathy for not just your question, but also for YOU. You are the reason MSWorld exists and thrives. So please continue to ask your questions, but don't get overly frustrated if we cannot give you a precise answer.
I came from a computer background with very black & white thinking. Over the years, I have learned that MS is gray with far more unknowns than knowns and that is very frustrating. Over time, most people learn to roll with the punches, but it takes time (often years) to get to that point.
One wonderful aspect of MSWorld is seeing people arrive here completely overwhelmed and shell shocked. After a little while, these same people are helping others and it's a beautiful thing. Hang in there ... and I wish you all well.
- Does this symptom mean I am in a flare?
- How long will this flare last?
- How long will it take me to recover from a flare?
- Should I stay on drug X?
- I don't trust big pharma. Can I go without medications and do just fine?
While these questions are all understandable, they do not reflect the unpredictability of the disease. Even so, most MS patients can understand how frustrating things are, especially for those in limbo or newly diagnosed.
Twenty people can start a flare on the same day. Ten can be treated by steroids and ten not be treated.
- There will be people that treat with steroids and fair better than others that did not have steroids. Likewise, there will be people that do not treat with steroids and fair better than others that did treat with steroids.
- There will be people in both camps that have complete remissions and others that have lingering or even permanent disability.
- Some people even go through a flare and never have symptoms. The symptoms can be subtle, or the lesions can be in unused parts of the brain. Undiagnosed people may start a flare and their medical teams never consider MS before the symptoms abate.
- We currently have no way to determine how any particular person will respond to any particular medication. Some people will do great on Drug X and others miserable on the same drug.
- With or without medications, some people will never experience another diagnosed flare up. With or without medications, some people will not have stable MS.
The great unknowns are part of the maddening nature of the beast. Here at MSWorld we do our best to help as many people as possible. For every post, there are a number of people with the same question, but never asked. We learn from each other. We also cry, laugh, celebrate and mourn with one another. That's why the "Patients Helping Patients" motto means so much to me and thousands of others.
We may never be able to answer your specific questions, but we hope to provide a safe environment for everyone to ask those questions. We hope that you find both sympathy and empathy for not just your question, but also for YOU. You are the reason MSWorld exists and thrives. So please continue to ask your questions, but don't get overly frustrated if we cannot give you a precise answer.
I came from a computer background with very black & white thinking. Over the years, I have learned that MS is gray with far more unknowns than knowns and that is very frustrating. Over time, most people learn to roll with the punches, but it takes time (often years) to get to that point.
One wonderful aspect of MSWorld is seeing people arrive here completely overwhelmed and shell shocked. After a little while, these same people are helping others and it's a beautiful thing. Hang in there ... and I wish you all well.
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