MS is a progressive disease and if you have been diagnosed with MS, be sure to take action and choose a treatment plan as early as you can. The sooner the better. I have encountered several people with MS that are not being treated for various reasons, but mainly out of fear. The best advice I received when I was facing the possibility of being diagnosed with MS was to choose a treatment as soon as possible. I'm glad I listened. The person that said this to me was a female co-worker in her early sixties who was diagnosed with MS when she was in her early thirties. She was in denial and chose not to face the reality until the disease progressed significantly and she had no choice. By the time she decided to treat her MS, she had too many lesions in her brain to count. She can walk but she appears to be drunk when she walks. She would fail a field sobriety test without any alcohol in her system. Now I tell people the same thing. Please take this diagnosis seriously and if you have to seek a second or third opinion, then by all means, do so but don't wait too long to choose the right treatment for you. Your doctor can help you make an informed decision. There are more MS treatments available now that were not available when my friend was diagnosed with MS over 30 years ago.
I began treatment for my MS the same night that I received my diagnosis. I already knew that there was a 50% chance that I had MS but it took almost a year because I only had 1 sign of inflammation in my T12 vertebrae of my spinal cord. That's the middle portion of your back. There was nothing noticeable on the MRI scan of my brain so the doctor could not diagnose me with MS until I eventually developed multiple lesions in my brain and additional lesions in my spinal cord within 7 months.
I am very, very passionate about staying informed and helping others with MS come to terms with their diagnosis and learn as much as they can about their enemy, Multiple Sclerosis. I did as much research as I could about MS. I really hoped that I didn't have it but I wanted to be prepared just in case. You may not like meds, and neither does MS. With the right treatment, you will win and MS will lose. You may not appear to have anything wrong with you for years, but it's not worth the risk to wait until things get worse and believe me, things will get worse. MS does not stop just because you don't believe in taking medication. Ask people with cancer and AIDS how they feel about all the medications that they take to sustain their quality of life.
My current MS therapy is aggressive and carries a risk of developing a rare brain infection called PML. Cancer, lymphoma, leukemia and AIDS patients face the same risk because anything that weakens your immune system can make you vulnerable to opportunistic infections such as PML. Thanks to the advanced treatments available for AIDS, the risk of developing PML is less likely. There is a common virus associated with PML called the JC virus, found in about 85% of the adult population. Most people have been exposed to this virus by the age of 10 but not everyone carries this virus. Those that do not have the JC virus cannot develop PML.
I found out that I do have the JC virus about 3 years ago but the risk factor has always been real for me from the day that I made the decision to try such an aggressive treatment. The effects of MS are far more dangerous and real for me to ignore. The risk is worth it for me at this time in my life. I have been on this treatment for 5 years and I have not had any relapses. The treatment does not take away or reduce the symptoms of MS. Tysabri slows the progression of this super ugly and complicated disease. Slowing the progression keeps me out of the hospital and able to enjoy my life.
Thursday, December 5, 2013
Sunday, November 10, 2013
Check out the WEGO Health Activist Speakers Bureau!
I just applied
to the WEGO Health Activist Speakers Bureau and I thought some of you might be
interested in learning more about it as well – it’s a great way for Health
Activists to share our stories, raise awareness and get the word out about the
work we’re doing.
Members of
the WEGO Health Activist Speakers Bureau receive exclusive invitations to
present at conferences, speak to members of the media, and be featured on WEGO
Health.
Saturday, November 9, 2013
Neurologist Update
This is an update to my post about my New Neurologist. I had my first appointment with Dr Stephanie Smith and it went very well. She's new to the city of Reno and she says she loves it here so I'm really glad to hear that. I hope she will be around for a long time. Everything went as well as I expected. I do miss my former doctor but I will still see her at MS dinners where I give speeches about my personal MS story.
If you or someone you know has MS and you have questions or you just need someone to talk to, please never hesitate to reach out to me. I mean it, I'm not just saying this because it sounds good. I love talking to and listening to my fellow MS patients and/or family members or friends of MS patients. We are all in this thing together and together we can make a difference.
My e-mail address is chocklitgirl@gmail.com or you can hit me up on Facebook at https://www.facebook.com/chocklitgirl32.
If you or someone you know has MS and you have questions or you just need someone to talk to, please never hesitate to reach out to me. I mean it, I'm not just saying this because it sounds good. I love talking to and listening to my fellow MS patients and/or family members or friends of MS patients. We are all in this thing together and together we can make a difference.
My e-mail address is chocklitgirl@gmail.com or you can hit me up on Facebook at https://www.facebook.com/chocklitgirl32.
Wednesday, November 6, 2013
A New Neurologist
Hi Everyone, I have great news. I may have found a neurologist to treat my MS. Her name is Stephanie Smith and she is new to our city. She is supposedly familiar with MS and I have an appointment in 2 days. I'm really looking forward to meeting her and I'm hoping for the best. According to a news release, Dr Smith completed her neurology residency at the University of Minnesota.
If you follow my blog then you know how much I have been through in the past with the local neurologists. We don't have many that treat patients with MS and my recent neurologist is no longer contracted with my insurance company. The other 3 or 4 MS specialists in Reno, NV have a policy that does not take on patients who have previously been treated by any of the other 4 neurologists within their group. It's very unfair to have MS and be refused treatment for something that is not your fault. I did nothing wrong but they treat me like I'm not a good patient.
Well, enough about them. I have better things to think about and talk about. What goes around comes around, that's all I have to say about that.
Stay tuned for my update after my appointment this Friday 11/8/13. Keep hope alive.
If you follow my blog then you know how much I have been through in the past with the local neurologists. We don't have many that treat patients with MS and my recent neurologist is no longer contracted with my insurance company. The other 3 or 4 MS specialists in Reno, NV have a policy that does not take on patients who have previously been treated by any of the other 4 neurologists within their group. It's very unfair to have MS and be refused treatment for something that is not your fault. I did nothing wrong but they treat me like I'm not a good patient.
Well, enough about them. I have better things to think about and talk about. What goes around comes around, that's all I have to say about that.
Stay tuned for my update after my appointment this Friday 11/8/13. Keep hope alive.
Sunday, October 13, 2013
The Conspiracy Continues
And the conspiracy continues.......
This is an update to the health care provider night mares that are taking place where I live. http://didimentionmyms.blogspot.com/2013/01/what-about-patients.html?token=yU9Ig0EBAAA.wtDewYq9M8t2B_pB_OeoQQ.5j8onZoycEXIPgsAtu7mJw&postId=3512503304457050802&type=POST
Most of the neurologists in my city are inaccessible to me and a lot of other "MS" patients. How is this legal? I don't understand. Especially since we haven't done anything wrong even though we are being treated that way. Let me back up a little.
Recently, my current neurologist switched to a group that does not accept my insurance. She is also a professor and she accepted a new and most likely better position for herself. I don't blame her and I am happy for her but I will really miss her. She and I speak at the same dinners sometimes so I will still see her every now and then.
Anyways, I called the same neurology group that I dealt with previously and asked if they were accepting new patients. The answer was yes right. That's when I gave my name and asked if they received my referral from my primary care physician. I was told that the doctor has reviewed my file and he saw that I am a former patient of another doctor so he is refusing to take me on as a patient. Then she tried to clean it up a little by saying that they are very busy so the doctors are taking patients on a case by case basis whether you have MS or anything else. Yeah ok, whatever. That's when I requested to speak with a manager. She was going to talk to the manager and get back to me. That never happened so 2 days later I called and this time I listened to all my options. What do you know, there was an option for the "office manager". She actually answered the phone since she didn't really know who was calling. She did receive my information so at least the receptionist did her job. The manager reiterated what I was told before so this time I requested her to send me a letter stating the reasons for denying to see me even though they claim they are taking new patients. I told her that I need it for my insurance company because I'm hoping to convince them to establish a contract with a new group.
So that's where I'm at right now. The biggest part for me is maintaining my monthly MS treatment. I found out that any doctor who is willing to register with the TOUCH program to help manage the risk associated with the treatment can prescribe Tysabri. That's good news as long as I can convince my primary care doctor to get on board. Stay tuned for the next episode.............
This is an update to the health care provider night mares that are taking place where I live. http://didimentionmyms.blogspot.com/2013/01/what-about-patients.html?token=yU9Ig0EBAAA.wtDewYq9M8t2B_pB_OeoQQ.5j8onZoycEXIPgsAtu7mJw&postId=3512503304457050802&type=POST
Most of the neurologists in my city are inaccessible to me and a lot of other "MS" patients. How is this legal? I don't understand. Especially since we haven't done anything wrong even though we are being treated that way. Let me back up a little.
Recently, my current neurologist switched to a group that does not accept my insurance. She is also a professor and she accepted a new and most likely better position for herself. I don't blame her and I am happy for her but I will really miss her. She and I speak at the same dinners sometimes so I will still see her every now and then.
Anyways, I called the same neurology group that I dealt with previously and asked if they were accepting new patients. The answer was yes right. That's when I gave my name and asked if they received my referral from my primary care physician. I was told that the doctor has reviewed my file and he saw that I am a former patient of another doctor so he is refusing to take me on as a patient. Then she tried to clean it up a little by saying that they are very busy so the doctors are taking patients on a case by case basis whether you have MS or anything else. Yeah ok, whatever. That's when I requested to speak with a manager. She was going to talk to the manager and get back to me. That never happened so 2 days later I called and this time I listened to all my options. What do you know, there was an option for the "office manager". She actually answered the phone since she didn't really know who was calling. She did receive my information so at least the receptionist did her job. The manager reiterated what I was told before so this time I requested her to send me a letter stating the reasons for denying to see me even though they claim they are taking new patients. I told her that I need it for my insurance company because I'm hoping to convince them to establish a contract with a new group.
So that's where I'm at right now. The biggest part for me is maintaining my monthly MS treatment. I found out that any doctor who is willing to register with the TOUCH program to help manage the risk associated with the treatment can prescribe Tysabri. That's good news as long as I can convince my primary care doctor to get on board. Stay tuned for the next episode.............
Saturday, October 5, 2013
Guess What Time It Is.....
If you follow my blog then you know that I am a patient advocate and I have traveled to conferences in Boston, MA for the past 2 years. It's time to head to another conference for the third year.
At the conference, we receive updates on important things like new treatment developments, government affairs, support for care partners, and healthy living. I look forward to this every year. It helps me build confidence when I speak to groups of people about my MS story and how people with MS can take charge of their condition and have a good quality of life. I connect with other advocates and share tips on how to make a difference in the MS community.
MS awareness has come a long way, but there is still a long way to go. In light of a cure, researchers are also trying to find ways to repair myelin damage. At the conference, we learn everything there is to know about our condition and how to treat it. We really are experts and we take pride in helping to educate our family and friends and other MS patients and the communities that we live in.
Here is my blog post about the first time my husband and I went to the advocate conference in 2011.
http://didimentionmyms.blogspot.com/2011/12/back-from.html
Here is my blog post about the advocate conference in 2012.
http://didimentionmyms.blogspot.com/2012/12/back-from-boston.html
At the conference, we receive updates on important things like new treatment developments, government affairs, support for care partners, and healthy living. I look forward to this every year. It helps me build confidence when I speak to groups of people about my MS story and how people with MS can take charge of their condition and have a good quality of life. I connect with other advocates and share tips on how to make a difference in the MS community.
MS awareness has come a long way, but there is still a long way to go. In light of a cure, researchers are also trying to find ways to repair myelin damage. At the conference, we learn everything there is to know about our condition and how to treat it. We really are experts and we take pride in helping to educate our family and friends and other MS patients and the communities that we live in.
Here is my blog post about the first time my husband and I went to the advocate conference in 2011.
http://didimentionmyms.blogspot.com/2011/12/back-from.html
Here is my blog post about the advocate conference in 2012.
http://didimentionmyms.blogspot.com/2012/12/back-from-boston.html
Thursday, October 3, 2013
Working Around MS.........Update
This is an update to my post Working Around MS
Good news. The company has agreed to allow me to continue the accommodation being allowed for me. For 2 weeks, I was very stressed and upset because I didn't understand what was going on. I felt like I was being attacked due to people's lack of understanding, knowledge and education about my condition. You see, it's not easy to tell that I struggle with MS daily. Someone asked me why I don't just go out on disability. Really? So I asked them, why don't you just go out on disability? They looked at me kinda strange and said, "What do you mean?" And I said, "Exactly"!
I can understand how it might seem unfair from the outside looking in. You don't know, what you don't know so you assume what you want to assume. I am guilty about making wrong assumptions about a situation when I don't have all the details. This has taught me a valuable lesson about assuming and how it can hurt others. I vow to give everyone the benefit of the doubt and not judge or make assumptions about people or situations that are frankly none of my concern. Honestly at this point in my life I don't have time to be concerned about what others are doing unless it directly affects me.
I can understand how it might seem unfair from the outside looking in. You don't know, what you don't know so you assume what you want to assume. I am guilty about making wrong assumptions about a situation when I don't have all the details. This has taught me a valuable lesson about assuming and how it can hurt others. I vow to give everyone the benefit of the doubt and not judge or make assumptions about people or situations that are frankly none of my concern. Honestly at this point in my life I don't have time to be concerned about what others are doing unless it directly affects me.
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