My Brain Looks Like a Christmas Tree

Monday I had my first Tysabri Infusion. It went fine, no side effects afterwards. Though they did have to give me Ativan and Xanax to stop Anxiety. And I told them to just start it and not tell me...lol

I had the JC Virus Blood Test before my first infusion and that will take 4-6 weeks to come back and they will email me the results. So I am now hoping this drug works for me, I've met people it worked miracles for and also people it did nothing for. I need a miracle! Way to many symptoms and new lesions my brain is lighting up like a Christmas tree in addition to the new cervical spine lesions I have at C2 and C5 THROUGH C7 - that just can't be good - they found one in my brain stem as well. I am NOT happy. But those of you who read this can all relate. So no pity party here, just frustration.

---------------------------------------

So have any of you ever had these symptoms (new to me):

You are laying in bed say on your side and you flex your feet to stretch and a buzzing just goes through your body. Same buzzing happens if I awake, laying on my side and I lift my arm up to stretch it out. I'm not moving my neck mind you JUST my limbs.

This one is really bothersome: I could be doing anything, walking into a restaurant (like the other day) and all of a sudden my entire left side - Head, Neck, Shoulder, arm, hand just gets the weird buzzing sensation and goes completely numb. I dropped my purse. Luckily hubs was there to hold on to, this one really freaks me out because it feels like I have a blood clot or something traveling...I don't (I was checked at the ER for it). Lasts for 5-10 min and passes. But comes out of nowhere, I'm trying to keep track if I'm moving my head a certain way or something.

Of course there is the Buzzing down my entire body/spine when I look down and even sometimes left or right in any capacity.

That round of IV Steroids 6 weeks ago did not last very long. I'm back to where I was and SO Fatigued it's nuts! And they tell me it will take 3-6 infusions of Tysabri (3-6 months) until I notice a difference? My husband will divorce me by then if he has to do all he is doing now. Ugh.

On the Plus side my MS Walk Team the Mid South Marchers has raised over 5K toward our 10K goal. Being team captain is challenging for 37 walkers. But Fun when you can't leave your couch very often! :)

So let me know if you've had any of the above symptoms and what helped you to heal them?

Monday, March 28, 2011 - First Tysabri Infusion

Today I will have my first Tysabri infusion. I'm nervous as I expect most newbie's to this drug are going to be. I'm especially nervous after an ER visit last Thursday that kinda gave me the final "You need to do this" moment regarding my questioning Tysabri. More New & Active Lesions in my Brain and Brainstem. Causing the WEIRDEST symptoms I've been told are from MS ever. I'll detail those in another post.

So if you look at the clock around 2pm CDT think of me and send me a little wish or prayer for luck! :)

Cold Feet

No I'm not talking about Wedding Day Jitters. I'm already married. I'm talking about cold feet feeling due to Neuropathy. Anyone else have this? One of your extremities feels cold you, maybe not to your touch but sitting under a blanket with socks on your feet feel cold. Finally, it dawns on you that's not cold it's pain. Nerve pain.

The odd symptoms we have with MS. I don't like my body being warm or even hot to the touch but I feel cold. Tell me about your experiences with Neuropathy or similar symptoms.

Statins & MS

If you had the ability to take a Statin medication such as Lipitor to help slow your MS progression would you? I have slightly high cholesterol and if there is a drug that can help that issue AND slow the progression of my MS why wouldn't I do it?

i plan to find out tomorrow if i can. The article below is almost 1 year old but raises some interesting questions. I'll you know what my doctor says.

======================================


From Drugwatch.com

Lipitor and other Cholesterol Drugs May Help Treat Multiple Sclerosis
April 16, 2010, 02:04 pm

Popular medications used to treat high cholesterol such as Lipitor may slow the course of multiple sclerosis (MS), according to a new study presented at the annual meeting of the American Academy of Neurology.

Over the course of a year, researchers studied 81 patients with early-stage MS, an autoimmune disease of the central nervous system that can inhibit the ability to walk and engage in other everyday activities. Patients in the study were chosen at random to receive either 80 mg of Lipitor (atorvastatin) a day or a placebo.

At the conclusion of the study, over more than half of the patients receiving Lipitor experienced no new MS brain lesions, whereas less than 30 percent of patients receiving placebo experienced the same.

Lipitor is a widely used medication that belongs to a group of drugs known as statins. The medication is used to treat patients with high cholesterol by inhibiting the production of cholesterol in the liver and reducing cholesterol levels in the bloodstream.

The new study, however, carries implications for the future potential of statin medications such as Lipitor in the treatment of MS.

MS usually develops between the ages of 20 and 40. An estimated 2.5 million individuals are living with MS worldwide, and the disease is currently the most commonly diagnosed neurological disorder among young adults.

While medications such as Ampyra can help alleviate the symptoms of MS, there is currently no cure for the disease. Experts in the field have called for larger follow up studies addressing the potential benefits of statin medications for MS patients.

Additional information about drugs and drug side effects may be found on DrugWatch.com.


Also....

Science Daily Article

Web MD Article

Exciting Times - I'm a Team Captain!!!

EXCITING TIMES!!! I am a MS Walk Team Captain For Tennessee Mid-South Chapter! I Volunteered at the MS Support Group Meeting we had on Saturday. It's a great thing. I need something to keep me busy since I am not currently working and even though I am currently going through a flare up (a pretty bad one at that) I need something to occupy my mind!

I'm thinking of fund raising ideas and such right now! I will be working with the MS Society directly and trying to get the word out there so if any of you have ever been a team captain before by all means feel free to fill me in! :)

Our goal is to raise 504K. Uh...wow! I will have to become a fund raising queen by the end of this! But I love a Challenge.

Feel free to leave ideas in the Comments Section!

Tysabri it is...

Going to be starting Tysabri in a few weeks....also starting the Swank Diet on my own soon as well. Already doing a low fat diet, going to see if I can handle the Swank Diet.

I also hope to start interviewing and talking to others with MS soon to get a better handle on what I think is the best way to battle this disease. I want a clearer picture. I am kinda in agreement that the root cause may be Vascular or at the very least it is a component.

I'll let ya know if I find anything interesting. Feel free to let me know in the Comments section if you would be open to speaking with me and answering some questions at some point regarding your own history of MS.

Ta Ta for now!

NO MS HUGS NEEDED!

I have been experiencing for the past month what can only be described as a MS HUG. My entire left torso from my hip to my shoulder feels tight, constricted and numb. When I eat it gets worse, when I walk it gets worse, the later in the day it gets worse. Basically unless I am laying down doing nothing...it gets worse. And what kind of life is that...

After almost 8 years since my diagnosis (2/24/03) I've experienced many symptoms, but, none like this. None that made me describe the left side of my body as stone. None that made it hard to breath sometimes because of how tight the muscles were and how constricted I felt. None that prevented my husband from touching my shoulder on that side because I would go through the roof in pins/needs pain.

Along with this wonderful constricted sensation the rest of my left side of the body is numb. To varying degrees. In the morning, I can awake and feel my left arm and leg...by the night I cannot. It's the oddest and most uncomfortable sensation ever. I don't care for it.

To top it off, if I wanted to stretch those tight muscles I cannot because I have L'Hermitte's sign which just sends a buzzing sensation down my spine and through my body. It's not pleseant.

Long story short...All these new symptoms started on 12/31/10...guess what I got for the new year...aren't I lucky....NOT. I go back to the Neuro tomorrow to discuss a further plan of action. If he doesn't give me what I want including physical therapy I am seeking a new Neuro. Something's gotta give. I'm not ready to have all these physical limitations yet! Not that I ever would be, but, I'm not even 40 yet!

I'm open to all suggestions for symptom relief if you have any please let me know!