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Posted: Thu Jul 10, 2008 7:08 pm Post subject: Test for inflammation
AC--you wrote about a test for inflammation:
Quote:
The name of the blood test Jeff has is an ESR, Erythrocyte sedimentation rate. His GP ordered it because of all his weird petechiae and bruises....she was ruling out leukemia and vasculitis, which were negative, but this test keeps coming back high. It is a non-specific test, and all it does is show inflammation. I'll bet the bank that all MS patients have high Sed rates on this test.
I am not a physician and I don't know much about these tests; there may be many with similar names. I have had a "Sed Rate Test" and it was normal, perfectly fine--not high at all. (I know the test is usually given to people suspected to have rheumatoid arthritis--RA. They certainly have inflammation and high sed rates!)
There is another nonspecific test for general inflammation in the body: the C-Reactive Protein (C-RP) test. It is thought by many to be a better indicator of heart disease risk than a cholesterol test. I think I recall that about half of those who have heart attacks do not have high cholesterol. It is thought these people have a high C-RP. (My father-in-law has never had high cholesterol in his life! But had a heart attack at age 60; he is 88 now. He has never had a C-RP test.)
There is another called the"high sensitivity C-Reactive Protein test (hs C-RP);" it is more attuned to vascular inflammation as in vasculitis (I suspected this, but, once again, the results were normal.)
I still suspect my hyperinsulinemia has damaged my blood vessels, accounting for "prickly" feeling in my feet, legs, and fingertips!
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 7:08 pm Post subject:
robbie wrote:
i guess what i am thinking is how they (the trial people) can say no you don't qualify because you don't have an active mri. is rrms a different disease or ?? i just don't understand this
I'm not the person who gets to define what the "truth" is but logic has it that MS is MS is MS and that situations may change but the underlying disease process is always the same.
Hopefully this makes sense: People involved with treatments have a lot invested and want their treatment portrayed in the best light possible.
Symptoms/disability based primarily on inflammation are vastly more likely to be eliminated by a treatment that is at all effective and the symptoms/disability in RRMS is primarily based on inflammation and is to a lesser degree based on neurodegeneration.
If you don't have something active on MRI, in researcher terms that means that your symptoms aren't primarily based on inflammation and therefore you probably don't offer the likelyhood of good results that they would like to compile in their database.
It sucks, but they make the rules.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Thu Jul 10, 2008 7:36 pm Post subject:
when you have spms and your getting worse, i can feel it affecting my arms and hands. with a new area of the brain or spinal cord being attacked is there inflammation and could this be helped by any of these drugs that are for rr ms ? _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Jul 10, 2008 7:59 pm Post subject:
I'm talking out of my ass because I can't prove any of it but I don't think there's any doubt that your situation involves inflammation, although not enough to show on MRI and I don't have any doubt that due to the action of something like Revimmune, it makes absolutely no difference what phase, it will stop the disease process.
Then again, because your symptoms/disability mostly results from neural damage, people in your situation would make the Revimmune data seem less effective and that isn't what they want. No one is saying that they can't stop your MS progression, they're saying that giving you MS won't provide impressive results for someone like you, and they want to document impressive results for future stockholders to see.
Too bad they won't treat you on a compassionate basis but I don't think you'd go through with it....would you?
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Who gives a shit Chicken or the Egg... why won't they give these drugs to spms, there are people here who are border line rr/spms getting accepted or not being accepted and it feels like there is a window here that if it closes you will be left behind.
Robbie believe it or not I can definitely understand why you don't give a shit about the chicken or the egg....
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Fri Jul 11, 2008 7:16 am Post subject:
Quote:
Too bad they won't treat you on a compassionate basis but I don't think you'd go through with it....would you?
i would for sure, might not have the impressive results their looking for but it might stop it where it is now. i can still wipe my own ass for now, i need this or death.
there is also some here that are border line rr/spms and to think that they wouldn't be accepted? _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Fri Jul 11, 2008 7:35 am Post subject:
robbie wrote:
there is also some here that are border line rr/spms and to think that they wouldn't be accepted?
From what I've been reading of the people who have been in contact with the JH researchers, it seems that acceptance is more, and almost specifically a matter of enhancement on MRI and less a matter of attempting to define what stage of MS someone is in.
Then again, "rumor" has it that JH is going to be accepting "SPMS" in the Fall or winter, and in that rumor the term used is SPMS and not "time of less enhancement".
Personally, if I were in your position, I would be in contact with the people at JH and I'd be such a long term pain in the ass that they would either have to treat me, get a restraining order against me or hire a hit man to eliminate me. If they told me that they would treat me if I could keep my mouth shut.....I'd keep my damned mouth shut. If they wanted money I would sell my car, my wife and kids and my Mother's headstone if I had to.
But that's just me.....
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Personally, if I were in your position, I would be in contact with the people at JH and I'd be such a long term pain in the ass that they would either have to treat me, get a restraining order against me or hire a hit man to eliminate me.
Bob
robbie is Canadian on their health care program. I would be surprised if he could get funding for the $60,000 to pay John Hopkins for a treatment that is still experimental.
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