Monthly Archives: April 2013

TYSABRI…yes or no!

Be careful what you ask for…you might get it! Now I’ve got too many drug choices, too little time!

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I had stopped taking REBIF for almost three years because; I just couldn’t do it anymore.  Two years after I stopped, I had my worst relapse to date.

Hmmm, is it because I stopped the REBIF?

I re-started the REBIF about six months ago, only because there were alternatives to these injections in sight , so I knew this would be temporary. Now, the problem is, I’ve got too many drugs to choose from.

I stopped the REBIF again, two weeks ago. I’m waiting on the results of my JC virus blood test   which I will need before I take Tysabri. I KNOW it will be negative so I’m hoping to start Tysabri as soon as possible.

Should I take Tysabri or Aubagio? They are two totally different animals. Tysabri is given by a once a month infusion, and Aubagio is an oral pill taken daily. The side effects are vastly different and I’m having trouble deciding. It’s like comparing apples to oranges; which is why I’m asking for your help.

Please tell me what your experience has been, on ANY of the newer MS Disease Modifying Drugs. My biggest relapse began about 18 months after I had STOPPED taking the REBIF. It’s frightens me to not be on ANYthing now; but  I just can’t go back to the injections.

Be careful what you ask for…you might get it!

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14 Comments

Filed under MS and Disease Modifying Drugs

My dear friend has been diagnosed with MS…ALMOST!

MeandDawn

Dawn: Hi Estizer! I’ve been thinking a lot about you lately. I’ve had some mysterious health issues over the last few years and my neurologist called yesterday to say that my spinal tap MS panel was positive. This is very new & scary for me so very few people know. I just had to tell someone and I knew you were the right person to hear it. Thanks for listening! ~Dawn 5:15pm

Estizer: Dawn!! you’re absolutely right,I AM the right person!! All I can say right now is, relax! It’s a scary thought, but RELAX. We can meet whenever and wherever you want. It’s gonna be fine.

 3:17pm-Dawn: The doctors still aren’t positive what I have! I had white matter changes on my (great video here) Brain MRI, a spinal tap that was positive for inflammation in the ms panel, but then I just got a normal result on a Cervical Spine MRI. This is so frustrating! I just want a diagnosis so I can move forward with whatever I have.

5:31pm Estizer: I know THAT feeling! What does “changes in the white matter” mean? Did you have lesions or not? mri-multiple-sclerosis-lesionsDid they show you? What have your MS symptoms been Dawn? This is probably the LEAST important question because there could be a million and one symptoms, and they ALL mimic some other illness as well. Have you had more than one weird episode? My leg originally acted crazy, but then it stopped. The NEXT year, it came back in both legs. Hence, the TWO separate weird things.

5:43pm Dawn: My Brain MRI was odd. Fluffy white patches that even baffled my neurologist. Not your typical lesion appearance I guess. Then he ordered the (great video here) Spinal Tap. My symptoms are odd too. It started with an episode of brain fog, fatigue, & low-grade temps 3 1/2 years ago. The afternoon fatigue & fevers have NOT gone away. A year & a half ago I started with a roaring sound in one ear and that’s what led to the Brain MRI since my ears turned out normal. In addition to this I have mild tingling in my legs & hands and definite muscle weakness in my hands.

5:48pm Estizer: I remember this test where I had to watch this TV screen that had black and white checks on it, while I had these “probes” on my head. Not at all painful. Did you do that one? That one for me was one of the tests that also indicated MS.Was your most recent MRI, a year and a half ago?

5:56pm Dawn:I am scheduled to take that visual test next week. Its called a Visual Evoked Response. My Brain MRI was in November. The Cervical Spine MRI just 2 days ago. I spent most of those years going to my family doctor who had no idea what was wrong with me. She sent me to an infectious disease doctor and urologist (because of frequent bladder infections). She also treated me with several different kinds of nose spray & antihistamines for my ear problems. I finally said enough with her and sent myself to an ENT. I can thank him for figuring out that my problem is neurological. Needless to say, I will need to find a new family doctor eventually. Did you ever have a Spinal tap?

6:03pm Estizer: HAHAHA, on the family Doc, and yes, on the Spinal Tap. It was one of my confirming tests. Too many white blood cells if I remember correctly. Sign of inflammation. I went thru a couple of unaware Docs too. When I was diagnosed though, happy to say, they had JUST recognized that MRI’s were a powerful indicator, or it would have taken much longer to catch. Be patient Dawn(yeah right!).

6:20pm Estizer: When they finally diagnosed me; I was relieved to KNOW as well. Big for me…it definitely was NOT a brain tumor, and it was NOT cancer. Those were my biggest fears. I guess I figured, as long as they came back with something that wasn’t terminal…I would be fine. Oh yeah, or make me lose my baby. I was pregnant with Lil. E. When they said MS, my two questions where; will it harm my baby and is it genetic? Will I give it to her? I liked the answers.

7:01pm Dawn:Thanks again for chatting! So many questions, like…Is it possible to have a normal spinal MRI and still have ms?

7:50pm Estizer: Gee Dawn, I’ve never had a Spinal MRI, just brain: / Sorry, I was away from the computer cause I took an emergency nap(LOL), MS fatigue.

8:09pm Dawn: I LOVE emergency naps! :)) Thank goodness they love me at work & give me time off when possible. I also have nice hours (7:30-3:30) which is when I’m at my peak performance. Working full-time is kicking my butt!

11:26pm Estizer: Yeah Dawn, but I miss working SOOO much. I miss the energy that I got from my kids but, MOST I miss the money; especially lately. I often think…I had to come out of the classroom TEN years ago. I won’t contribute to my household for what, FORTY YEARS? With all of the new medicines now, I’m beginning to wonder, how can I use some of them to make some changes? Seeing my “new” neurologist on Monday. Meanwhile, I suggest you do less at home. Teach the boys to cook. Make it fun. Tell them that they get one day each, per week. They need to decide the menu and put the stuff they’ll need on the grocery list. They can cook WHATEVER they want, as long as it’s healthy…whatever you think that means. 

9:18am Estizer: Hey!! How’d Sherry’s senior portraits come out??

6:24pm Dawn: I do love my job so I will hang onto it as long as I can. But I am in bed by 8:00 just about every night since I give ALL of my energy to my job. Sherry’s senior portraits were pretty nice. Not nearly as nice as what you got of her at Lock Ridge but a nice shot of her in each of her sports uniforms. I bought a collage so it’s a nice memento. Michael will be next. He graduates next year already!

8:51pm Estizer: Dawn, if this type is RRMS…it can be managed, and you will feel better. Hang in there and be patient with yourself.

Comments: What was your initial experience?

Are you in the process of being diagnosed now?

Have any new test been used?

 

4 Comments

Filed under Diagnosing MS