This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,

Does anyone know the difference between the JCVirus and the Tysabri Antibody Titre?

Believe that the JC Virus is a latent virus in about 85% of the general population and it remains dormant unless your immune system becomes severely compromised in some way. And Tysabri does just that and can allow the virus to let loose in the brain.

Antibody titres are a measurement of one's immune system's reaction to a drug. In some people, certain drugs can cause one's immune system to produce antibodies against it, thus rendering the drug's effect pretty much useless. This reaction almost always results in the patient having to stop taking the drug forever.

Docs will usually closely follow patients using any of the MS approved drugs carefully by checking for antibodies to ensure their immune system isn't producing these damaging antibodies. Each patient reacts differently with some not having any problems at all to those who have to stop taking the drug.

If I'm off base in these comments, I hope someone set's me straight.

Harry

Thanks, Harry.

I went to my neuro, and I'm now being tested for PML. Which is rather heart-breaking, and also really maddening, since I've been the one to remind my 'team' that I'm due for JCV follow-ups, and I've been JC-negative each time. I've been having all sorts of crazy symptoms in the month I've been off of T, and he decided to not even bother with the JCtest, and just go straight for the PML tests.

Here's hoping I'm just having a weird relapse (despite the Tysabri still being in my system...I don't know what it means. I'm just kind of openly angry about it, for several reasons).

Thanks for responding, though!

Aw jeez, mscubed! I'm sorry to hear you're actually being tested for PML. I just posted on your question in a Gilenya thread, but missed the PML note there. Holy crap! And no, it's not fair, and your anger seems justified.

Like I said in my Gilenya posts, my neuro wants me to finally take SOMETHING (which seems pretty silly after 40 years of MS), so I even humored her by giving in to a JCV test (no results yet), figuring if I was JCV positive she'd quit trying to sell me on Tysabri.

Sending good thoughts, and please keep us updated!

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Hi,

Thanks for your responses. Fortunately I learned that my MRI did not show any indication of PML/new MS activity. But that said, I'm -still- having the symptoms which are noticeable to both friends/colleagues who know/don't know. I've been getting comments lately, too.

But, instead of further investigating this, I'm just told to go on 'another drug, asap.' This is my frustration. I'm currently losing words, memory, concentration, and my god, the weakness in my legs has become strikingly worse. And the onset was all within <24 hours of each other.

It makes me feel like either a) I've gone mad, b) My doctor team isn't following through, or c) they're not reading the MRIs carefully, or something. In a year of appointments saying "you have no significant changes," and the "MRIs aren't showing significant changes," I went from being mobile with a part-time cane to being fitted for a wheel chair by a physical therapist.

I want to believe my neuro is good- he's a well-known/respected 'Specialist.' However I refuse to believe that this sudden and notable onset of weakness, aggravated spasms and cognitive change is "nonexistent, because you're MRI shows no enhanced/new lesions."

Also, the nurse who tested me for "Tysabri Antibodies" had her nurse call to say it came up 'negative,' and to get an infusion ASAP. Completely disregarding the fact that I had an allergic reaction to the drug. Even my neuro said he completely disagreed with her and was taking me off, immediately.

So frustrated. Starting to feel like I don't even want to bother with Gilenya. Just MJ, acupuncture, diet and happy thoughts. Just feeling like if something happens unmedicated, the guilt's on me- if I become injured from the negative effects of ANOTHER dmd, "at least I was trying to slow the MS."

Which leads me to a question:

Has anyone ever heard of progression occurring without 'notable MRI changes?'

I've been falling in public, having the worst time in casual conversations, and really frustrated at the lack of involvement/follow through from my doctors, the past few weeks. I'm beginning to feel that, despite all my own reading and research and questions, I don't know what the heck I'm dealing with, with this disease.

What about gray matter atrophy? That could cause the cognitive issues...not sure about the rest. High cortisol, known to be a part of the MS picture, can cause regional gray matter atrophy, which is reversible in many cases. Maybe something you can do to stop/reverse progression? It's a legitimate problem in MS so your doctor should be willing to manage cortisol levels.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3122328/

Sorry you're having a hard time.

Since some people report symptoms but have NO lesions found on MRI and other people with NO symptoms have been found, upon autopsy, to have MANY lesions, I personally believe there is no correlation between lesions and symptoms/progression of MS.

Science has not established the cause of MS; therefore, I do not believe scientists can have any effective treatment.

I encourage you, mscubed, to investigate hormone imbalances, diet and exercise.

_________________
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

I have heard similar statements to this, and the one thing that bothers me about it is that you are comparing different people. If you could compare a single person and the effect of their lesion load changes over time, on their progression, I personally think (ie have no supporting to published articles) there would be some correlation. And not to forget other parameters such as brain volume.

Thanks, lyndacarol, for your thoughts.

I have had a complete cbc, tested for everything (in preparation for Gilenya), get daily exercise, and while I don't eat a lot, I make sure that my meals count.
M'in therapy, physical therapy, walk a lot, despite the fatigue and leg-weakness... I take vitamin supplements...

It's reassuring to hear that there's SOMEONE 'out there' that even -suspects- a lack of correlation between lesions:symptoms/progression.
Just saw a video on PPMS that one can have progression with even few lesions, and it made me think "Thank god, maybe I'm not crazy." But then quickly thought "Why the heck are my doctors so eggs-in-one-baskety on the MRIs?" The minute the MRI comes back, they drop it and don't do anything except push DMDs, which have shown no help, so far.
-Tysabri- each month just felt worse and worse after each infusion, then on the seventh one I had an allergic reaction.
-Avonex, no improvements, my body never adjusted to it, was taken off.

Bah!
Anyway, thanks for your feedback! be well!

Hi again, mscubed,

In the 10 years of research and forums since my MS diagnosis, I've read in many, many reports that MS brain lesions don't necessarily correlate with symptoms, exacerbations, progression, prognosis, or anything else. The brain is so plastic it manages to reroute signals around a lot of them. I also understand that spinal lesions do have more of an effect on symptoms, due to their nature in the narrow area of the spinal cord.

And now, here's a link to my story and several of my MRIs. general-discussion-f1/topic16335.html

On my surprise diagnosis in 2003, they found my brain crammed full of lesions, although, at the time, my symptoms were barely noticeable. In fact, I was going through what I considered the healthiest period of my life due to my healthy-ish lifestyle. Go figure. My progression started only when I quit smoking (my only vice then), started to screw around with vitamins/supplements, LDN, etc. (I progressed to a cane 6 months after starting LDN.)

In fact, with each new vitamin/supplement (Vit D, B12, omega 3's) the downward spiral seemed to accelerate a bit and I have daily symptom charts to verify that.

So, now back to you. Your story of quick, new symptoms and speedy progression does NOT seem like true "MS progression" at all, but more like a major exacerbation or a med reaction - or even another disease. Please pester your docs to observe you closely, since there was a recent info link (from CureOrBust?) showing PML has been reported even after 6 months of Ty.

SPMS and even PPMS are characterized by a 'general' decline through YEARS and not days. Of course, MS is completely unique to every individual, so who knows?

Best to you and keep us updated.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)