YoungWithMS.com

New Migraine Medication!!!

YoungWithMS — Sat, 28 Jan 2012 18:20:29 +0000

Hi there everyone. I hope that everyone is having a good day. I know that I am. The Lord Almighty my great savior and comforter has provided me with another day. My doctor started me on a migraine medication because I was having serious migraines with nose bleeds. It has been getting increasingly worse and the doctor prescribed me Fiorcet. I have two doses of it already and it makes you sleepy and a little woozy. Dr Goldberg thinks that this will help me alot and I am going to trust him no matter what with it. I had a hard time for a while trusting alot of things that he said because I didn’t understand but once I just stopped letting my fear take over I was good because now we are on the same page and we have a very specific plan and it is working out fantasticly. I am really looking forward to starting this new drug GILENYA. I am thrilled to not have to stick myself anymore. I know that there are alot of multiple sclerosis patients that feel the same way that I do that it is horrible to have to constantly stick yourself with a needle then deal with the scar tissie and injection site reactions. Well I am going to get off here and enjoy this amazingly gorgeous saturday. Hope that everyone has an amazing weekend and may god continue to bless you always. Until Next Time.

Many Blessings,

Jennifer Rose

Looks Like a New Journey for Me!!

YoungWithMS — Fri, 27 Jan 2012 17:57:13 +0000

Hello Everyone!!!! Well it looks like I will be taking or at least I am going to try and take another exciting journey in the world of Multiple Sclerosis medication. This time it is going to be GILENYA. I went to my neurologist this morning to discuss everything. I cannot express to you in words how much of an exhausting and lengthy process it is to start a medication. I am feeling very optimistic about this drug I have done some research on it and I am doing more as we speak. I am very excited because it is a pill and not a shot. I won’t have to deal with sticking myself which I absolutely hated. The process for taking GILENYA is long you first have to blood work then you have to go see an eye doctor and a cardiologist. I am excited about the change but their is always that small part of me that is worried. Everyone has that small part of themselves that worries when it comes to trying something new. I would like to now tell everyone a little about GILENYA.

GILENYA:

-Reduced the number of relapses

- Kept many people relapse-free

- Delayed disability progression

-Was proven effective in clinical trials with over 2500 people

-Provides freedom from injections

Thank you everyone for taking the time to read my post I greatly appreciate it. I like sharing in my journey with everyone. I will keep everyone updated . Many blessings to everyone. Until Next Time.

Smiles and Hugs,

Jennifer

Tysabri

YoungWithMS — Tue, 17 Jan 2012 02:09:14 +0000

This evening I am choosing to write about Tysabri. I am not sure if everyone is familiar with the drug most I am betting that almost everyone from the Multiple Sclerosis community knows what I am talking about. The reason why I am choosing to write about this is because my neurologist and I have recently decided to take me off of my previous Multiple Sclerosis medication which was Rebif (interferon beta 1-a). Once I hit my 5 yr mark of having the disease I realized that I have been having a lot of relapses that have resulted in extended hospital stays and after sitting down and talking with my amazing parents we all came up with the same conclusion that it was time to try something new. At first when I told my doctor that I wanted to switch he has a funny face then he said I was wondering when you were going to ask me to try something new. At first I wanted to try the new oral medication that they have out and then once he told me the extensive testing that has to happen before you can even be considered for the medication I quickly changed my mind. He told me that it is either a drug that is a once daily injection or Tysabri which is a once every 28 day infusion. I was like where do I sign up. He said ok and he started to explain the side effects and the risks. He said that first I needed to be tested for this thing called the JC antibody virus. I have been tested for that and I get my results on the 27th of January which is my next appointment with him. I told my neurologist that no matter what I am going to start the drug because I have heard nothing but good things about it and how much the quality of life for patients gets better after being on the medication for a little bit and some have even experienced a change after their first dose. So now I am going to tell you a little bit more about the medication.

Tysabri is a prescription medicine approved for adult patients with relapsing forms of MS to slow the worsening of physical disability that is common in patients with MS and decrease the number of flare-ups (relapses). Tysabri does not cure MS and has not been studied for longer than two years or patients with chronic progressive MS. There are definitely some down sides to Tysabri that are very scary and well here they are. Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy or PML for short. PML usually happens in people with weakened immune systems. No one can predict who will get PML. There is no known treatment, prevention, or cure for PML. Your chance of getting PML is higher if you are also being treated with other medicines that can weaken your immune system including other MS treatments. Even if you use Tysabri alone to treat your MS, you can still get PML. Your chance of getting PML increases with a longer period of treatment or if you have received medicines that can weaken your immune system prior to starting Tysabri. Tysabri is available only through a restricted distribution program called the TOUCH Prescribing Program. In order to receive Tysabri, you must talk to your doctor, understand the benefits and the risks of Tysabri, and agree to all of the instructions in the TOUCH Prescribing Program.

Two benefits of Tysabri MS treatments are that you don’t have to self-inject and it’s given just once every 4 weeks. Unlike most other MS, Tysabri is administered by infusion at an infusion center, a specifically equipped doctor’s office, or an infusion clinic within a hospital. Tysabri is infused through a needle placed in a vein where your arm bends.

Well I know that this has been a very long blog but I am hoping that it was informative for anyone that is considering Tysabri as a treatment option or knows someone that is. If you have any questions please do not hesistate to ask me. Until next time. Take Care and God Bless.

Smile,

Jennifer

The Doctor and Me

YoungWithMS — Thu, 12 Jan 2012 18:36:47 +0000

I have been going through alot with m Multiple Sclerosis and my doctor and his staff has always been there every step of the way to answer any questions or concerns that I may have. The importance of having a wonderful relationship with your doctor and his/her staff is so incredibly important because they are a vital part of your care throughout your journey with Multiple Sclerosis. If you are newly diagnosed with Multiple Sclerosis then I very much urge you to research the different neurologist in your area because you definitely need to have a good team behind you as you start your journey. Now being in my 5th year of having this disease and I can tell you that your first couple of years are going to be rocky and you are going to want to feel like giving up so many times but just remember that with amazing faith and a great teams of doctors you can absolutely accomplish anything. I am always here to answer any questions that you may have. Always feel free to email me. Until next time.

Smiles and Prayers,

Jennifer

Taking time for yourself to Relax!!!

YoungWithMS — Sun, 18 Sep 2011 19:47:16 +0000

Hi there hope everything is ok with everyone. I am writing a post today about taking the time for yourself and relax. Wether you choose to take a hot relaxing bubble bath and read a good book or take a mini-vacation and enjoy peace and quiet. I have had alot of people suggest yoga to me. I have tried it a couple of times and liked it but I am the type of person where I would rather have a friend go with me. I feel that everyone deserves a little time to themselves. When you are going through something like dealing with a disease such as MS it definitely takes alot out of you. My advice is to find what is relaxing for you and stick with it. Listen to relaxing music or go get a massage and don’t forget mini vacations are the best. Do whatever makes you happy.

Until Next Time

Youngwithms

The importance of MS Research and Awareness

YoungWithMS — Thu, 15 Sep 2011 19:09:23 +0000

I am writing this post because after watching Clay Walker on Fox News talk about MS and the lack of knowledge that the general public and even the MS community has about the importance of MS research. Most people think that there is a cure for MS and that it isn’t as bad as it seems. But the truth is there is absolutely no cure for MS and research is so so very important. MS is a very debilitating disease. Some medical professionals are talking about the importance of stem cell research for the purpose of curing MS. While other medical professionals are leaning towards a more organic and holistic method of curing the disease. I am hoping with everything that have that there is a cure in my lifetime. I was diagnosed in 2007. It was the scariest moment of my life when I was told. I thought of my goodness what am I going to do. Is there a cure how do I cure this? I did my research and I have amazing doctors and I am doing great. I am not cured but with the right combo of medication I am managing my disease really well. If you have MS or know someone that does please get involved in any way that you can as far as awareness goes. Lets fight for a cure. I have chosen to be an advocate for MS! What do you choose?

Until next time,

Youngwithms

ENERGY!!!!!!

YoungWithMS — Wed, 07 Sep 2011 18:53:28 +0000

I know that everyone has had heard this word ENERGY!! I know that I have my share of issues with energy. I am pretty sure that anyone with MS or any sort of medical condition can relate to me when I talk about having low energy levels or being super fatigued. Having energy or well balanced energy includes many different elements. Maintaining energy balance, or taking in as many food calories as you are expending on a daily basis can be challenging for anyone, especially when you suffer from a chronic progressive disease such as Multiple Sclerosis. When I was first diagnosed with Multiple Sclerosis I was really scared because I was worried about having enough energy to go about my day to day life and doing the things that I have always enjoyed such as playing with my little brother and nephew. I wondered if I would be able to work and enjoy the things that I once loved.

The Answers

YoungWithMS — Wed, 27 Jul 2011 16:13:30 +0000

Hi everyone! Hope that everyone is having a great week. I am going to write about answers today. Everyone goes through their life saying that they wish they had the answers to certain problems or dilemmas in their lives. Some people want the answers on why they can’t find the one they are meant to be with for the rest of their life or why they didn’t get that promotion. I am definitely guilty of doing those things. I sometimes do it on a daily basis but through everything I remember that GOD has my back and will always show me the way. I pray all the time for things in my life. Whether it be for the people around me or myself. I know that GOD may not always answer me right away but I know that he will answer me in his own time because he knows what is best for me always. GOD has higher expectations set for us then we have set for ourselves. Always remember that if you put your trust in GOD he will provide for you. He will take care of you. Until next time, Take Care and many blessings!

YoungwithMS

I’m Back!!!!

YoungWithMS — Mon, 18 Jul 2011 01:55:42 +0000

Hi everyone!! Sorry that I have been gone for so long. Hope everyone is doing well. Well a lot has been happening. My life has been going really well and I feel very blessed to have met the people that I have the past couple of months. I believe that everyone that you come in contact with in your life has a purpose. I have had the great blessing of meeting a wonderful family The Stokers. Kris and Melissa are absolutely wonderful people. They are so loving and caring. They have two kids Evan and Claire. They are truly wonderful children. I am very blessed to have met them and become close with the family.

Now as for my MS everything is going really well. I have had no problems although in June I had to do this test called an ambulatory EEG. That was a very interesting 3 days. Actually it was the most annoying 3 days ever. It was highly uncomfortable and it took me days to get the glue out of my hair. I got the test results back from that and everything was super and great. Nothing to currently report.

I thank everyone for taking the time to read my blog. I am definitely going to start blogging more and more. I will be more active with this website. Until next time, Take Care and God Bless.

Youngwithms

Personal Relationships and MS

YoungWithMS — Thu, 13 Jan 2011 22:24:56 +0000

Well I am pretty sure this is a topic that has come up if you are a patient suffering from Multiple Sclerosis. Personal relationships can definitely be affected when you have Multiple Sclerosis or any sort of disorder or health issue. I know that Multiple Sclerosis and the stresses and different things that go along with it have definitely put strain on personal relationships. When you are a single woman out there trying to find someone that you can spend forever with or you are just out there dating. Bringing up something as serious as Multiple Sclerosis can definitely put a cloud over the relationship in some cases. But there are some people that it doesn’t bother them wether you have it or any other disorder. Some people just love and like you for you. Which when that happens is like a breath of fresh air. If you have any comments on this subject please by all means send them to me. Would love to hear them.