GREAT VISIT!

[Waydwnsouth1]

Well my first visit with my new MS Specialts went wonderful. She reviewed my latest C-Spine and T-Spine MRI, which was done in December 2015, with me and pointed out a lesion in each location that the Radiologist didn't call. They are both located on the left side. Hence my left side weakness.

She also suggested I switch from Avonex to Lemtrada. I have read a little bit about Lemtrada but will need to really educate myself much better before making that decision. She did give me plenty of material on the medication to read. I asked how many patients she currently has on Lemtrada, without hesitation she said 5. She said they tolerate it well and one of her patients was between a rollator and wheelchair, now walks with no assistance at all.

So my family and I have a BIG decision to make.

Is anybody here currently on or ever have been on Lemtrada? I would love some input.

[Maryjane135]

Hi! I am nine weeks post my first round of Lemtrada. There is a very helpful and informative group on FB- just search Lemtrada. Jen

[Waydwnsouth1]

Thank you for the info Maryjane135!

[hunterd]

I am not on it but we have our own forum, you can find it here, http://www.msworld.org/forum/forumdi...?139-LemtradaI
wish you the best of luck

[Goldfinch]

Well my first visit with my new MS Specialts went wonderful. She reviewed my latest C-Spine and T-Spine MRI, which was done in December 2015, with me and pointed out a lesion in each location that the Radiologist didn't call. They are both located on the left side. Hence my left side weakness.

She also suggested I switch from Avonex to Lemtrada. I have read a little bit about Lemtrada but will need to really educate myself much better before making that decision. She did give me plenty of material on the medication to read. I asked how many patients she currently has on Lemtrada, without hesitation she said 5. She said they tolerate it well and one of her patients was between a rollator and wheelchair, now walks with no assistance at all.

So my family and I have a BIG decision to make.

Is anybody here currently on or ever have been on Lemtrada? I would love some input.

A question: I thought our brains are divided into hemispheres, like the earth. The left hemisphere controls the right side of the body, and the right hemisphere controls the left side of the body. If this is true (and perhaps I am being too simplistic) then your left side lesions should be causing right side weakness, no?

Of course, our brains have a lot of redundancy wired into them, and my neuro explained that is why my MRIs aren't as hair-raising as it would seem. He said that even though my lesion load is significant and shows activity in areas we would rather not see, I must have additional pathways handling the load placed on the brain to where my lesions are the only visible proof I have MS. I have been very fortunate so far, in that physically, I am doing well.

Now I've gone and jinxed myself. We'll find out that the real measure of deterioration is loss of brain volume. Which I also have but was noted to be "mild" by the radiologist on my last report.

Incidentally, you WILL find more info on Lemtrada on the medications board. I am a Lemtrada patient myself. I had my second series of infusions this year, and so far, so good. No negative side effects, and I haven't had a relapse since the first infusion. I would not let the specter of an unknown to me med dissuade me from trying it, as long as the benefits outweigh the risks. I had to go off of Tysabri because I had been on it too long and my JCV titre tested too high to allow continuing the Ty. I had already been on Avonex and Gilenya as well, with two vicious relapses on Gilenya. Every day I thank my lucky stars the Lemtrada was approved in time to allow me to benefit from it. I do have lasting damage from the last relapse, but I have recuperated from it.

[twain]

Why so much switching?

Just one thought -- you seem to have been changing DMT's on an almost annual basis. Since it can take many months for some of these drugs to work, I wonder on what basis your docs are switching you so often, and so continuously.
Unless you are progressing very markedly, with more lesions, and more disability, I would think they would want to give any particular medicine more time to work.

[jreagan70]

She reviewed my latest C-Spine and T-Spine MRI, which was done in December 2015, with me and pointed out a lesion in each location that the Radiologist didn't call. They are both located on the left side. Hence my left side weakness.

I thought our brains are divided into hemispheres, like the earth. The left hemisphere controls the right side of the body, and the right hemisphere controls the left side of the body. If this is true (and perhaps I am being too simplistic) then your left side lesions should be causing right side weakness, no?

That's true of brain lesions. But the lesions mentioned (quote above) by the OP are spinal cord lesions. Cord lesions affect the same side of the body.

Of course, our brains have a lot of redundancy wired into them

Conversely, the spinal cord has very little redundancy. Depending on location, even a small cord lesion can have significant effects. Recovery from a cord lesion depends on healing of the lesion itself because there generally isn't any redundant wiring to route around it. Because of that, cord lesions need to be taken seriously.

[Waydwnsouth1]

Goldfinch---you are absolutely correct. I got my left and right confused. Imagine that. LOL!

Twain---I have been switched a lot. I'll take the blame for some it. I stuck with a Neuro I shouldn't have. But I also I relapsed with increased lesion load suck led to couple of the switches. Being on Avonex again is totally baffling to me. But it took me a while to become qualified to see civilian specialists. When I did become qualified I searched for a good MS Specialist. It was very evident she was head and shoulders above the other two Neuro's I had seen. I have also progressed rapidly. I'm 5 years DX and in a wheelchair. Things have happened quickly so, along with the increase in lesion load and quick progression just trying to find something that would help. Trust me, I didn't like switching so often at all. But also didn't like the fact that I was progressing so quickly.