Friday, July 20, 2007

The MS Wave

July 10
My pain has been off the charts for days and it was becoming debilitating and no medication I have is working. I have a Texas trip coming up and I am feeling like shit. It gets depressing and scary when multiple sclerosis exacerbate because you begin to wonder how long it's going to last.
Pain Pain Go Away…

July 11
I Woke up telling my husband I wouldn’t be able to go with him to Texas if my Solu-Medrol infusion didn’t make me feel better. It’s moments like this when I get pissed off with multiple sclerosis. It is also moments like this when I realize how much my husband really loves me. He told me, “If we have to wait another day to leave then that is what we will do because he meant it when he said in sickness and health”. The Solu-Medrol kicked in 30 minutes into the infusion. I am relieved and ecstatic knowing I am able to join my husband in Texas. I feel so damn good after weeks of intense pain I am going to the salon for a manicure and pedicure.

July 12
Texas here we come! The drive gave me a chance to start reading, “The Five People You Meet in Heaven" , by Mitch Albom. We never go straight to Texas without visiting some good friends in Scott Louisiana. Also, a must have food from Louisiana are deboned stuffed chickens from Hebert's Specialty Meats. Going for a long drive with the one you love make you feel like the luckiest person in the world.

July 13
Before we got started on the activities of the family reunion that evening, we went grocery shopping for the must have foods from Texas to bring back with us to Tennessee. We never can leave Texas without bringing back boudin, blue crabs, zummo sausage, Broussard's links, and seasoning from Tex Joy. Unfortunately, for me the heat index rose to 108 degrees and I was starting to feel the nerve tingles and pain through out my body. I silently prayed over and over for the Solu-Medrol to continue to work, normally I receive three consecutive days of Solu-Medrol, but I only had one.

I made it to the first function of the family reunion that evening; “The Fish Fry” Texans know they can cook...that was the best tasting fish I ever tasted at a fish fry. My pain and the nerve tingles accompany with the feeling of nausea were starting to intensify the Lortabs helped some, but I couldn’t wait for the night to end.

July 14
I was determined not to let how I feel ruin our time in Texas. Multiple Sclerosis is part of me and I choose not to let IT control me. Lately MS been rearing its ugly head with a vengeance, but I am going to adjust to this new wave like I adjusted to the waves that has lead up to this moment. I opted out on the morning activity for the family reunion in order to join everyone during the evening activity. People would not know I have MS by looking at me because on the outside I look like the picture of health. Looks are deceiving and I no longer care what people think when I have adjust my game plan to enjoy my life and do the things I love to do.

July 15
I am proud of myself because I was able to enjoy everyone during the family reunion festivities with only my husband and sister-in-law knowing how bad I was feeling. The only reason my sister-in-law knew I was going through changes is because I needed her help when the nausea I have been feeling finally erupted in a violent way. We were staying at my sister and brother-in-law home after visiting some friends I told my husband I needed to go back to the house, but he didn’t have to stay with me. Texas is his hometown and I knew he had a lot of catching up to do with friends and family.

July 16
I felt a little better after the nausea feeling went away, but the pain and tingling stuck around. I knew I had to make an appointment with my neurologist because of this new wave of intense pain. I was also glad I was going to be leaving the next day because there is no place like home especially if you are not feeling well. I lounged around and I finished reading my book. I also made the decision to pull back on being an activist in my community. A good friend of mine in Texas reminded me I cannot save everyone in need or trouble and I must learn to pick and choose because of my illness.

I believe my entire purpose for making it to Texas was to have the conversation I had with him. On the road trip going to Texas I had a call from a reporter, a cop, and a dear friend who is in a crisis. The reporter is not in a crisis, but the cop is. If the information I received from the cop is accurate his problem will be solved if he handles it the way it needs to be handled. Because of my own issues with the new wave of pain from MS I informed him he will be okay now that he have a lawyer and I can no longer carry his stress, I did all I could do it is now up to him. I basically told my good friend the same thing.

July 17
The skies burst wide opened in Texas and Louisiana and safety come first. We decided to wait until the next day to leave.

July 18
There is no place like home!

July 19
I called my neurologist about my symptoms and the intense pain. I have an appointment for Friday now all I can do is try to unpack our bags and put away all the food we brought back to take my mind off the pain.

July 20
Just as I suspected my illness is progressing, I know the daily Copaxone injections I take daily slows the progression of MS not stop it. I am not in denial on what MS do, I just HATE there is no cure for it. My only resource is to try the various medical treatments they have for MS to live as normal of a life as possible. My Neurologist suggested that I try Tysabri, I wrote a post about that once. I wish I still had it, but theunexpected happened . Until I make my mind up about Tysabri or any other new treatment over Copaxone I have to continue MY research on the different treatments available to me. To help combat the intensified pain I was prescribed morphine patches to wear and told to take Lortab for the breakthrough pain.

I am a little leery of morphine patches, but if it takes away the pain I am experiencing now I am willing to try it. I guess I will have a lot to talk about in the upcoming days. I hope my you tube question is selected during CNN presidential debate. I will talk about that later because its time for me to take my shot.


Lauren said...

Hi there, I don't know your name there but my name is Lauren and I have had MS for 31 + years. I have had 10 Tysabri infusions so far and Tysabri has pretty much stopped any breakthrough disease activity that I was having. I haven't had a relapse since October 06 (except for a very mild one in May 07 that completely cleared up within just a few days).

If you want to read more about Tysabri, you can go to the all volunteer non-sponsored website: accurate Tysabri information is available for reading.

You might be interested in knowing that I was one of the MS patients that testified (via videotape) at the FDA AC Tysabri hearings in March 06 along with other MS patients in our efforts to bring Tysabri back to the market for those of us who wanted it and need it so desperately for our MS.

Considering the ABCRs that are available to us and Tysabri's superior efficacy of 67%, by far, they can't hold a candle to Tysabri.

I hope your pain lessens considerably, and if you would like to read My Tysabri Diary, please feel free to view it at:

All my very best to you, Lauren :)

Blinders Off said...

Hi Lauren:

This is the second time my doctor suggested I try Tysabri. I considered it, but I couldn't get pass how quick they pulled it off the market, how quick they put it back in the market, and most of all knowing Tysabri increases your chances of getting PML.

Thanks for the web sites and stopping by because lately with the frequent painful flares I have been experiencing and how this pain almost caused me to do something drastic just to stop it. I am seriously thinking of trying Tysabri. One way to help me with that decision is hearing from people like you who are actually taking Tysabri.

I told my neurologist I will give her my answer at my next appointment Aug. 25 if I decide to use Tysabri. Question

1. Why if I decide to take Tysabri I have to answer a series of questions and what are they?

2. How many hours it take to have a Tysabri Infusion?

Blinders Off

Lauren said...

Hi D... feel free to post these on your blog :)

As to your two questions, here are my responses:

1. "Why if I decide to take Tysabri I have to answer a series of questions and what are they?"

It is part of the Touch protocol which has been designed to screen severely immune compromised MS patients from receiving Tysabri, thus minimizing the risk of PML.

The Certified Infusion Center asks you 4 questions before they administer Tysabri... those four questions are:

1) Over the last month, have you had any new or worsening medical problems(such as a new or sudden change in your thinking, eyesight, balance,strength, or other problems) that have persisted over several days?

2) Do you have a medical condition that can weaken your immune system, such as HIV infection or AIDS, leukemia or lymphoma, or an organ transplant, that may suggest that your body is not able to fight infections well?

3) In the last month, have you taken medicines to treat cancer or MS or any other medicines that weaken your immune system?

4) In the past month, other than for the treatment of a recent relapse,have you taken any of the following medicines: Solumedrol,methylprednisolone, Decadron, dexamethasone (sp?), Depomedrol,predisone, or other steroid medicines?

I think those are the 4 questions they ask you...note: If and only If the patient answered NO to all questions (1-4) can Tysabri be infused.

If the patient answered yes to any question, do not infuse, contact the physician who prescribed to them, and review the patient's answers. (In otherwords, your doctor makes the decision whether to infuse or not, not the infusion center personnel. They are to follow your doctor's orders).

2. "How many hours it take to have a Tysabri Infusion?"

It takes one hour for the infusion, and then you have a one hour "observation time" after the infusion is complete. I usually doze off, watch TV, or visit with the other patients at my infusion center.

All my best D... feel free to e-mail me anytime you want.

Lauren :)

Blinders Off said...

Thanks for answering my questions Lauren. After talking with my primary care doctor today...whom I trust with my life I will be posting my decision.