Monday, December 30, 2013

I'M GOING ON TOPOMAX FOR MY MIGRAINES! HERE'S CHAPTER 1 IN MY TOPOMAX STORY!


I had to make an appointment with the MS Center yesterday to be seen this morning for help with my migraines. My "Pain" doctor has gotten tired of me trying to get help from her that she has passed the buck back to my MS doctor and his office to help me instead.

They saw me this morning. I told them about the severe migraines, how nothing I have used for it has helped me, and I am hurting to much to try and enjoy life anymore. The NP I saw understood what I was talking about and was looking at my medical notes to try and see if there was anything that she could help me with.

I asked her what her opinion was on Topamax for migraines? She told me that was the drug she wanted to put me on because she use to have severe migraines and it had worked well for her. She saw how I was on it for a short time in 2010 when my migraines first started but we both have no idea why it was stopped. She gave me the prescription to try again and told me to hang tight with the migraines until the middle of August when I see my MS doctor and have my MRI. She believes my next step if the Topamax doesn't work then my MS doctor will make me go see a professional medical doctor who specializes in dealing with migraines.

The NP did warn me and told me that I will lose weight from being on it as well. She told me not to worry if I can't wear my clothes any more that I am wearing now because of the medicine. I smiled and thanked her. I even told her that in a comic tone that I wanted to lose more weight, the size 4's I am wearing now wasn't small enough of when I lost my weight on purpose to get to the size 4's from a size 18. LoL

So we will see how the next few months will be like for me in the weight issues.

Friday, October 4, 2013

TYSABRI WORKS GREAT FOR ME BUT I NEEDED HELP TO PAY FOR IT!


I use to get help for my Tysabri treatments from the Cronic Disease Fund. I got a letter from them about 2 months ago that let me know that they have stopped covering my treatments months before I got the letter. I started to worry and wonder what my next steps would be? It is the only treatment that works for me and all the pill versions my MS doctor and I doesn't want to try and start using yet since Tysabri works really good for me. The MS Center started to make calls from other companies to try and help me with my treatments since after my insurance covers what it does each month I would still be responsible for over $700.00 out of pocket. I haven't been able to work in so long, that isn't an option.

Tuesday, September 24, 2013

Patti MacArthur, Columnist: "Giving myself Imitrex for pain was the most painful feeling that I have experienced


I saw my MS doctor last week and he told him how I have been to the ER three times in the last two months for my migraines. They gave me a shot and and sent me home each time. My doctor said he has the same type of medicine in his office and he gave me samples to try out. He told me when the migraines gets to tough to use this needless injector and then wait two hours for the  if I still needed help with my migraines.

The first time my migraines got bad I chickened out and just took pain pills that didn't work. The second time they hit me two days later I got the guts to try it out. I opened up the one of the boxes and read how to break the glass top to get the aread ready for the medicine to leave the application. To be on the safe side I did use an alcohol preps for the area. I squeezed the muscle on my leg  like the directions told me to  and I didn't

Patti McArthur, Columnist: TYSABRI WORKS GREAT FOR ME BUT I NEEDED HELP TO PAY FOR IT!


I use to get help for my Tysabri treatments from the Cronic Disease Fund. I got a letter from them about 2 months ago that let me know that they have stopped covering my treatments months before I got the letter. I started to worry and wonder what my next steps would be? It is the only treatment that works for me and all the pill versions my MS doctor and I doesn't want to try and start using yet since Tysabri works really good for me. The MS Center started to make calls from other companies to try and help me with my treatments since after my insurance covers what it does each month I would still be responsible for over $700.00 out of pocket. I haven't been able to work in so long, that isn't an option.

Tuesday, July 9, 2013

My name is Patti & I'm a new Columnist on the MS News Channel! Here's a bit about me:

Before I found out I have MS in 2002 I was missed Dx in 1999. I had a neuro that did all the tests of MS when my vision was spotty. All the tests, blood work, and spinal tap came back negative with very little lesions on the MRI. He said he didn't know what I had, he guessed it was MS, and wanted me to start treatments/shots. He scared me with guessing so I left his office without any medicine to help my vision. I went on with my life and the vision got better for almost for years. In 2002 I went blind in my left eye and the vision specialist helped me get my vision back with two weeks of IV steroids.

He did a MRI as well and he too was guessing on my
 results and said he wanted me to start MS treatments. I left his office on his guessing and without starting any type of treatments with him.

My sister was hearing how the neuro and eye specialist was guessing what was going on with my health and so she made me an appointment at a MS Center to see if they could give me a true diagnose. I got to see a MS doctor, he read the past medical records, looked at the MRIs, and said to me "Without a doubt, you do have MS."

I cried that day and after talking to my MS doctor we picked a treatment to start. I started on Avenoix, the first shot changed everything in my life forever.

The first shot of Avenoix gave me a reaction that caused severe nerve pain in both arms from the elbows down. Each shot I took to try and slow down the disease gave me more problems. I felt like I had the flu 6 days a week and no energy. My MS doctor didn't like how I was doing six week while on Avenoix and he took me off of it and started Rebif.

Rebif seemed to be doing ok until the third week of doing the shots. I started walking funny. I tripped on my left foot often as I was dragging it with each step.

The pain in my arms kept getting worse and my walking caused my MS doctor to do another MRI. The MRI changed my life more as well as my MS doctor. The results came back and hearing my MS doctor cry from seeing the results let me know there wasn't any good news.

"I am sorry to let you know that the treatments caused you to have a reaction and caused the disease to progress quickly instead of slowing down. I can not let you work any more and starting soon I will have you do monthly rounds of steroids and Cytoxian (Chemo)IV for a year to try and slow down the disease."

I cried hard that day because of the pictures i saw of my MRI and how I was less than three months shy of hitting my goal in my career and heard I can no longer work.

A year worth of the Cytoxian and 1-3 days a month of steroids was the best treatment with my disease. I had another MRI done in early 2004 and there was only two little white spots or lesions.
My MS doctor and I both agreed that any other form of treatments with shots for this disease wasn't going to be wise. He continued me on steroids every month until something else was released for treatment.

I went about four years just doing steroids every month and was feeling a lot better. The pain had eased up a lot and my MS doctor let me go back to work.
I
 worked for about six months until the MS hit me. I got severe pain wrapped around my ribs that caused difficult in breathing. I found out through MS friends on Myspace at the time and my MS doctor that I was fighting the "MS Hugs." The joke I use to this day when I see my MS doctor is the disease loves me so much that I am constantly getting hugs from it.

Tysabri was started in 2008 and I had to quit working again because of the reactions I was having from this treatment. I stayed very dizzy and constantly falling while walking. The MRI showed that the treatment was working for me but I couldn't handle the side effects of the drug. After being on the treatment for five months, against my doctor's advice I took myself off of the treatment.

Six weeks after getting off of the treatment the dizzy spells cleared up. I went back on steroids IV every month to help me try and keep the disease to stay calm. For almost 3 more years everything stayed quiet.

In 2011 I ended up with severe migraines and the MRI showed that the disease has awaken up again. I had a talk with my MS doctor and we both agreed to try and start Tysabri once again. He told me to try and stay on the treatment for at least 6-8 months no matter how I feel. The first four months was hard to handle with side effects but the sixth month MRI showed that it was working. A couple more months passed while I was on it and it seemed like my body was getting use to the treatment better. Here it is in the middle of 2013 and I just had a treatment a couple days ago without any complications and I did get to go back to work again for a few months in the Winter of 2012.
I will continue to have goals of working again each time my MS doctor tells me to stop.



Monday, June 17, 2013