Lesion in Cervical area - Staying calm

[Lucia]

Today I found out that I have a lesion in the cervical area.

My Nuero had ordered MRIs for my neck and lower back after he found more lesions in my brain then before.

The plan is to switch me over to Gilenya since it seems that the Rebif, I've been taking for over 13 years, isn't effective anymore.

I asked what that meant - having a lesion there - he said that could/would give me mobility problems, when it flares.

What surprises me is my reaction to the news. I'm not freaked out by it. Maybe it hasn't sunk in or maybe I'm a little relieved. I knew eventually the Rebif would stop working and lived in fear because of it. Now it has happened. Life goes on. I still needed groceries and cat litter. But, I also now need to realistically plan for the future, as much as I can and keep fighting.

Another thing. As I rode home on my bike from the Nuero, I saw myself riding faster down streets and around corners. But, going to the Nuero., I had taken these corners, etc. much slower and with greater care. It's not a death wish. I'm not crossing six lanes of traffic against the light or anything. I just suddenlyfelt that I didn't need to be afraid all the time.

I don't know what the future will bring. I'm sure I'll swing from despair to hope and back again countless times.

All I know is that the air felt warm when I rode home today, the glow of the sunset was kind to my eyes and I ate some fresh pears and yes, I got some hard facts.

It would be trite to say I was living in the moment but I guess I was but I didn't expect it this way. It was a mix bag of good and bad tumbling over each other until I couldn't distinguish one from the other at times.

Lucia

[palmtree]

What you are experiencing is wonderfully expressed but it is not nearly as catastrophic as it might seem.

You are still riding your bike. That shows your balance is in good shape. You have so much ability to preserve. This isn't time to experiment with others DMTs. Ask your neuro about Tysabri. It's the best. You won't be disappointed.

[SNOOPY]

Hi Lucia,

Today I found out that I have a lesion in the cervical area.

I knew eventually the Rebif would stop working

I am curious what is the basis of knowing Rebif is no longer effective? These medications are meant to hopefully decrease lesions load that doesn't mean you won't have new lesions, it's just "hopefully" you won't have as many as you might have without medication.

If you have only had one new lesion in 13 years then it's possible Rebif as been helpful to you. One lesion doesn't equate to "Rebif isn't effective anymore" in my opinion. Regardless of treatment it is always possible to have new lesions, exacerbations and progression.

And the interesting thing is, even if your MRIs didn't show new lesions that doesn't mean you won't have new symptoms or an exacerbation.

As far as spinal cord lesions <sigh>, yes, they are well know for causing mobility issues and can be more symptomatic than brain lesions. However, I have been diagnosed for 30 years with this disease mainly affecting the spinal cord and I am still mobile. I can still walk unaided but I will use trekking poles for mobility aids when I know I will be out walking quite a bit.

Enjoy how well you are doing, enjoy your life, try not to focus on the what if's and keep riding your bike and exercising. Your fear of the disease and "what ifs" may cause you more difficulties than the disease it's self.

Take care

[pennstater]

Lucia,

I have lesions from C2 to C6, numerous and two large lesions. I have had them since initial MRI 10 years ago. I am still able to walk well. I am starting to have more issues with right arm, but I have symptoms there that go back 23 years. My balance is decent, I just have to be careful. It is not the spinal lesion causing the issue, but brain lesions and dizziness.

I can ride a bike, slower though. I can kayak, but need a tandem now so I can rest. If neuro does one leg balance test eyes open, fine. Eyes closed, then fall, I get dizzy.

My problems are mainly fatigue and cognitive. My spinal lesion load is heavy, but brain lesion load low. So while there may be more direct correlation with spinal lesions, just their presence does not mean you will have those problems.

Keep doing all the things you can. It is hard, but I try not to worry about what is, as I can't change it. I focus on what I can change. So stay as active as you can, continue to enjoy your bike.

[Lucia]

Thanks for theresponses Folks and well wishes. Yes, Icontinue to ride my bike. Actually, it’sa three wheel adult bike because – yeah – I do have some balance issues. However, the balance issues have more to dowith never having or knowing how to ride a bike as a kid then MS. But, I can’t rule out the effects of MSconsidering I was dx when I was 50. BTW, I walk fine.

For a number of years I've been stable with 48 brain lesions. My last f/uMRI showed that I jumped
from 48 to 79 in six months. The jump in lesions prompted my Nuero toorder the additional MRI's of my neck and back. That's how they found outabout the lesion in the cervical area. Ihave no lesions in the back.


Now I’ve neverhad MRI’s done in my neck or back before so it may be that the lesion wasalways there. Whatever the case, the resultswere enough for my Nuero to suggest a change from Rebif to Gilenya.



I was dx withMS in my fifties in 2000 after a nasty bout of TN. I’ve been lucky that Gabapentin and Rebif haskept me relatively attack free for years. This has enabled me to work long enough for me to retire withbenefits. I do have some minor attacksnow and again (tingling around my face or thighs for one) but they go awayquickly.


Therefore, I’velearned to take the results with a good measure of salt and have learned to goon with my life as best I can.

[Waydwnsouth1]

Keep riding that bike Lord knows I wish I could but my balance is to bad. I have had mobility problems as well as balance problems for some time now but no lesions have showed up on any Cervical or Spinal MRI's. Puzzling to me.

I am go today for a MRI of the Brain, Cervical spine, and Thoracic spine with and without contrast. This is a follow up MRI after a flare and a bad clinical exam for balance and mobility.