Aa
blood test for ms?
has any body heard of this or done this? could it really be that easy If I do it and its positive will the dam neuro finally take me seriously?
A New Way to Identify Patients likely to have Multiple Sclerosis
Diagnosing Multiple Sclerosis (MS) can be very difficult and time consuming, sometimes taking months to years to receive a diagnosis.
Initially, physicians need to exclude other diseases that have similar symptoms. In addition, MRI examinations are not always clear and clinical symptoms are often inconclusive. These factors make diagnosing MS a complex and sometimes lengthy process, which can be very frustrating for individuals and physicians.
In order to help patients and physicians identify patients with a high probability of having MS, Glycominds has introduced the gMS®Dx test, a new blood test for MS biomarkers. This revolutionary test helps physicians identify which patients that have had a first neurological event and a positive MRI are likely to develop MS.
Why use the gMS®Dx test?
•NEW - First blood based biomarker test validated for MS
•POWERFUL - High positive predictive value for identifying patients likely to have MS after the first neurological event
•The gMS®Dx test differentiates MS from other neurological diseases
•SIMPLE - Easy, non-invasive test, that complements MRI
A New Way to Identify Patients likely to have Multiple Sclerosis
Diagnosing Multiple Sclerosis (MS) can be very difficult and time consuming, sometimes taking months to years to receive a diagnosis.
Initially, physicians need to exclude other diseases that have similar symptoms. In addition, MRI examinations are not always clear and clinical symptoms are often inconclusive. These factors make diagnosing MS a complex and sometimes lengthy process, which can be very frustrating for individuals and physicians.
In order to help patients and physicians identify patients with a high probability of having MS, Glycominds has introduced the gMS®Dx test, a new blood test for MS biomarkers. This revolutionary test helps physicians identify which patients that have had a first neurological event and a positive MRI are likely to develop MS.
Why use the gMS®Dx test?
•NEW - First blood based biomarker test validated for MS
•POWERFUL - High positive predictive value for identifying patients likely to have MS after the first neurological event
•The gMS®Dx test differentiates MS from other neurological diseases
•SIMPLE - Easy, non-invasive test, that complements MRI
I had the test! I had a feeling glycominds was sketchy......yes another positive result. I have brain lesions also. I saw a spec. at USC
One would think that a spec. at USC would know what they were doing........after receiving the blood test result- she wants me to get started on treatment
Not sure about this test
One would think that a spec. at USC would know what they were doing........after receiving the blood test result- she wants me to get started on treatment
Not sure about this test
Wow Sammi - and welcome. I wonder what happened there? It's hard to know without more details but I have to wonder what your doc may have found out about the validity of the test between the time he ordered it and the time the results came in.
I think it's interesting that we haven't heard from anyone yet who received a NEGATIVE report. Are those simply disregarded as inconclusive OR are there not many negative results? As I said earlier, it will be interesting to hear from anyone who may have had this test and been reported to have a LOW likelihood of MS development or rapid MS disability progression.
I'm glad you joined this discussion Sammi. As you feel comfortable please start a new topic to introduce yourself and share as much (or little) of your story as you like. I'm sure the first thing you'll hear is a suggestion for a second opinion. Neuros who are sitting on the fence about a MS diagnosis often suggest a consult with a MS specialist themselves.
I surely hope you are not losing function as you wait!!! Even when diagnosis isn't possible docs have an obligation to provide relief from pain and disability to whatever degree is possible. Sometimes your PCP is the best doc to direct that kind of treatment - sometimes.
I think it's interesting that we haven't heard from anyone yet who received a NEGATIVE report. Are those simply disregarded as inconclusive OR are there not many negative results? As I said earlier, it will be interesting to hear from anyone who may have had this test and been reported to have a LOW likelihood of MS development or rapid MS disability progression.
I'm glad you joined this discussion Sammi. As you feel comfortable please start a new topic to introduce yourself and share as much (or little) of your story as you like. I'm sure the first thing you'll hear is a suggestion for a second opinion. Neuros who are sitting on the fence about a MS diagnosis often suggest a consult with a MS specialist themselves.
I surely hope you are not losing function as you wait!!! Even when diagnosis isn't possible docs have an obligation to provide relief from pain and disability to whatever degree is possible. Sometimes your PCP is the best doc to direct that kind of treatment - sometimes.
Welcome to our community april896! This discussion is a little bit dated but I have to thank you for posting here. I missed all this when it first showed up. Your question gave me a reason to take a look and make some general comments.
Having done that first, I don’t want to ignore your specific questions! I hope you don’t mind if I copy your post, break it into sections to answer and then give my response in CAPS. Please know I’m not shouting or angry. We just don’t have any other options here to clarify, differentiate or stress any part of what we want to say. So here goes…..
“They have excluded the possibility of me having Ms because my multiple O bands in CSF were the same as in my serum and all of my MRI's are normal.”
THE LP LOOKS FOR O-BANDS THAT ARE UNIQUE TO CSF. BANDS THAT ARE PRESENT IN SERUM AS WELL AS THE CSF DIDN’T ORIGINATE IN THE CNS AND ARE THEREFORE NOT SIGNIFICANT TO SUPPORT A DIAGNOSIS OF MS. (See our Health Page that explains this.)
“I just personally wanted to rule MS out.”
UNFORTUNATELY, THERE IS NO TEST THAT PROVES OR DISPROVES MS.
“Well my results on the GMS test showed a 95 High Positive with a High risk for rapid progression. (I do not understand the EDSS score being 11 when I heard it only goes up to 10) a bit confusing. I wish someone would be willing to explain my alarming results.”
THE COMPANY OR YOUR PHYSICIAN WOULD HAVE TO DO THAT. FRANKLY, I DOUBT EITHER WILL-OR CAN. THE NATURE OF MS (as it is presently understood) IS UNPREDICTABLE PROGRESSION OF BOTH RELAPSES AND DISABILITY (although those with rapid progression of disability from MS usually see evidence of it with the first year or two).
“One of my doctors said by the looks of it I should be dead.”
I HOPE HE WASN’T SERIOUS. IT SOUNDS LIKE HE IS BEING A BIT SCARCASTIC AT YOUR EXPENSE (based on your description of his call to the lab).
“How could I be that 1% when I tested not only high positive for M.S. but also with rapid progression? How could I have a false positive reading on both of these tests?
THIS TOPIC (meaning the one where you posted your question) HAS MUCH TO SAY ABOUT THE VALIDITY OF THE GMS TEST. YOU MAY WANT TO SCROLL UP AND REVIEW THE COMMENTS AGAIN. ALTHOUGH MANY (perhaps even most) NEUROS STILL ORDER CSF TESTING WHEN MS IS SUSPECTED, SOME ARE TESTING ONLY TO RULE OUT OTHER DISEASES (believing its value in MS diagnosis was overestimated in the past). SOME NEUROS WORSHIP SPECIFIC (or classic) MRI FINDINGS FOR DIAGNOSIS. OTHERS UNDERSTAND THAT LESIONS AND SYMPTOMS WON’T ALWAYS CORRESPOND. ALMOST ALL OF THEM WILL REQUIRE SOME VISIBLE MRI EVIDENCE OF DEMYELINATION BEFORE DIAGNOSING MS. IN THE END, MS DIAGNOSIS IS MADE ON THE COMBINDED BASIS OF TEST RESULTS AND CLINICAL FINDINGS-NOT WITH ANY SINGLE TEST.
“So far I have been diagnosed with having RA,APS and SLE with CNS involvement.”
YOU DON’T STATE YOUR SYMPTOMS BUT ALL THESE DIAGNOSES HAVE PRESENTATIONS SIMILAR TO MS. IN FACT THEY ARE AUTOIMMUNE DISEASE THAT ARE OFTEN AS DIFFICULT TO DIAGNOSIS AS MS. IS THERE SOME REASON YOU DOUBT SLE IS RESPONSIBLE FOR YOUR PARTICULAR SYMPTOMS?
“I now after seeing the results on GMS have my doubts…Unless one of my original diagnosis has same glycans and can trigger false positives.”
I DON’T KNOW ENOUGH ABOUT THE ‘GLYCANS’ THE GMS LOOKS FOR AND REPORTS TO ANSWER THIS PARTICULAR DOUBT. PERSONALLY, I’D SUGGEST YOU DOUBT THE GMS RESULT AND REVIEW THE EVIDENCE ON WHICH YOUR PRESENT DIAGNOSES WERE MADE. I’D BE SURPRISED IF A DOCTOR DIAGNOSED RA, APS AND SLE WITHOUT AT LEAST A MINIMAL AMOUNT OF DIAGNOSTIC SPECIFIC CRITERIA BEING MET.
I hope that helped a little and that your doctor gets more interested in useful explanations and in helping you feel better. If you have specific questions about symptoms or their treatment, you’ll likely get the best results if you ask by starting a new topic in this forum or in one of the other MedHelp forums where members share their experiences living with autoimmune diseases.
Having done that first, I don’t want to ignore your specific questions! I hope you don’t mind if I copy your post, break it into sections to answer and then give my response in CAPS. Please know I’m not shouting or angry. We just don’t have any other options here to clarify, differentiate or stress any part of what we want to say. So here goes…..
“They have excluded the possibility of me having Ms because my multiple O bands in CSF were the same as in my serum and all of my MRI's are normal.”
THE LP LOOKS FOR O-BANDS THAT ARE UNIQUE TO CSF. BANDS THAT ARE PRESENT IN SERUM AS WELL AS THE CSF DIDN’T ORIGINATE IN THE CNS AND ARE THEREFORE NOT SIGNIFICANT TO SUPPORT A DIAGNOSIS OF MS. (See our Health Page that explains this.)
“I just personally wanted to rule MS out.”
UNFORTUNATELY, THERE IS NO TEST THAT PROVES OR DISPROVES MS.
“Well my results on the GMS test showed a 95 High Positive with a High risk for rapid progression. (I do not understand the EDSS score being 11 when I heard it only goes up to 10) a bit confusing. I wish someone would be willing to explain my alarming results.”
THE COMPANY OR YOUR PHYSICIAN WOULD HAVE TO DO THAT. FRANKLY, I DOUBT EITHER WILL-OR CAN. THE NATURE OF MS (as it is presently understood) IS UNPREDICTABLE PROGRESSION OF BOTH RELAPSES AND DISABILITY (although those with rapid progression of disability from MS usually see evidence of it with the first year or two).
“One of my doctors said by the looks of it I should be dead.”
I HOPE HE WASN’T SERIOUS. IT SOUNDS LIKE HE IS BEING A BIT SCARCASTIC AT YOUR EXPENSE (based on your description of his call to the lab).
“How could I be that 1% when I tested not only high positive for M.S. but also with rapid progression? How could I have a false positive reading on both of these tests?
THIS TOPIC (meaning the one where you posted your question) HAS MUCH TO SAY ABOUT THE VALIDITY OF THE GMS TEST. YOU MAY WANT TO SCROLL UP AND REVIEW THE COMMENTS AGAIN. ALTHOUGH MANY (perhaps even most) NEUROS STILL ORDER CSF TESTING WHEN MS IS SUSPECTED, SOME ARE TESTING ONLY TO RULE OUT OTHER DISEASES (believing its value in MS diagnosis was overestimated in the past). SOME NEUROS WORSHIP SPECIFIC (or classic) MRI FINDINGS FOR DIAGNOSIS. OTHERS UNDERSTAND THAT LESIONS AND SYMPTOMS WON’T ALWAYS CORRESPOND. ALMOST ALL OF THEM WILL REQUIRE SOME VISIBLE MRI EVIDENCE OF DEMYELINATION BEFORE DIAGNOSING MS. IN THE END, MS DIAGNOSIS IS MADE ON THE COMBINDED BASIS OF TEST RESULTS AND CLINICAL FINDINGS-NOT WITH ANY SINGLE TEST.
“So far I have been diagnosed with having RA,APS and SLE with CNS involvement.”
YOU DON’T STATE YOUR SYMPTOMS BUT ALL THESE DIAGNOSES HAVE PRESENTATIONS SIMILAR TO MS. IN FACT THEY ARE AUTOIMMUNE DISEASE THAT ARE OFTEN AS DIFFICULT TO DIAGNOSIS AS MS. IS THERE SOME REASON YOU DOUBT SLE IS RESPONSIBLE FOR YOUR PARTICULAR SYMPTOMS?
“I now after seeing the results on GMS have my doubts…Unless one of my original diagnosis has same glycans and can trigger false positives.”
I DON’T KNOW ENOUGH ABOUT THE ‘GLYCANS’ THE GMS LOOKS FOR AND REPORTS TO ANSWER THIS PARTICULAR DOUBT. PERSONALLY, I’D SUGGEST YOU DOUBT THE GMS RESULT AND REVIEW THE EVIDENCE ON WHICH YOUR PRESENT DIAGNOSES WERE MADE. I’D BE SURPRISED IF A DOCTOR DIAGNOSED RA, APS AND SLE WITHOUT AT LEAST A MINIMAL AMOUNT OF DIAGNOSTIC SPECIFIC CRITERIA BEING MET.
I hope that helped a little and that your doctor gets more interested in useful explanations and in helping you feel better. If you have specific questions about symptoms or their treatment, you’ll likely get the best results if you ask by starting a new topic in this forum or in one of the other MedHelp forums where members share their experiences living with autoimmune diseases.
"With all good intentions, Torikat posted copy written by Glycominds that seemed to present a scientific breakthrough, but was really the web equivalent of the kinds of drug ads we see on TV. I was trying to show y'all the "fine print" because I have direct experience. I did not post out of malice (remember, I've got 17 o-bands, lesions,.and can't get treatment and I took the test!)--but because MS-ers and Limbolanders alike ARE STARVING FOR ANSWERS, AND G-MINDSs' MAY BE PREYING ON OUR NEED FOR HOPE AND ADVOCACY." (CAPS added by twopack for emphasis)
Member 17o_bandslater's observations are valid and her conclusions seem to be well thought out. We shouldn't dismiss anyone
-solely because they are the uncommon (or single) dissenting voice
in the room
-simply because they say something we don’t care to hear
-unless we read what is offered completely and carefully
-without CONSIDERING SOURCES VERY, VERY CAREFULLY
(cited 'experts' and personal opinions both included)
(fwiw) I AGREE completely with 17o_bandslater:
"People who opt to take the test should do so with both eyes wide open."
Going forward, it will be interesting to hear from anyone who may have had this test and been reported to have a LOW likelihood of MS development or rapid MS disability progression.
Thank you all for sharing your experiences.
Member 17o_bandslater's observations are valid and her conclusions seem to be well thought out. We shouldn't dismiss anyone
-solely because they are the uncommon (or single) dissenting voice
in the room
-simply because they say something we don’t care to hear
-unless we read what is offered completely and carefully
-without CONSIDERING SOURCES VERY, VERY CAREFULLY
(cited 'experts' and personal opinions both included)
(fwiw) I AGREE completely with 17o_bandslater:
"People who opt to take the test should do so with both eyes wide open."
Going forward, it will be interesting to hear from anyone who may have had this test and been reported to have a LOW likelihood of MS development or rapid MS disability progression.
Thank you all for sharing your experiences.
I had it done as well as a request from my neurologist because he was on the fence about diagnosing me. It came back very high positive "rule in". While I waited for the results, I researched the company, even talked to them on several occasions because I was very skeptical working in a lab myself.
Anyway, when I got the result back I was thinking I would finally get a dx, after all he ordered the test right?? Wrong...Still waiting!!!!!!
Anyway, when I got the result back I was thinking I would finally get a dx, after all he ordered the test right?? Wrong...Still waiting!!!!!!
Hello,
I too had the Glycominds GMS test done a couple of months ago. My neurologists have all refused to even look at my test results saying they do not use it and will not give it any consideration to my diagnosis whatsoever. They have excluded the possibility of me having Ms because my multiple O bands in CSF were the same as in my serum and all of my MRI's are normal. I just personally wanted to rule MS out. Well my results on the GMS test showed a 95 High Positive with a High risk for rapid progression. (I do not understand the EDSS score being 11 when I heard it only goes up to 10) a bit confusing. I wish someone would be willing to explain my alarming results. According to my results I will be in a wheelchair before too long. One of my doctors said by the looks of it I should be dead. I have called the lab a dozen times trying to get an explanation of my results with no success. It says at the bottom of the test results that if one has any questions or needs interpretation of the test you should call their hotline number. When you do this they will either not return your call or refuse to explain results unless you are a doctor. They did tell one of my doctors that I probably did not have MS(they said the test was not used to diagnose MS but instead tell one whether or not they have had at least one attack of RRMS and will progress) Not sure what the difference is. Anyway they said I was most likely the 1% false positives. They said this because my doctor told them I had normal MRI's. How could I be that 1% when I tested not only high positive for M.S. but also with rapid progression? How could I have a false positive reading on both of these tests? So far I have been diagnosed with having RA,APS and SLE with CNS involvement. I now after seeing the results on GMS have my doubts. How can BOTH test results be a 1% false positives? Unless one of my original diagnosis has same glycans and can trigger false positives.
Any input would be appreciated.
Thanks
I too had the Glycominds GMS test done a couple of months ago. My neurologists have all refused to even look at my test results saying they do not use it and will not give it any consideration to my diagnosis whatsoever. They have excluded the possibility of me having Ms because my multiple O bands in CSF were the same as in my serum and all of my MRI's are normal. I just personally wanted to rule MS out. Well my results on the GMS test showed a 95 High Positive with a High risk for rapid progression. (I do not understand the EDSS score being 11 when I heard it only goes up to 10) a bit confusing. I wish someone would be willing to explain my alarming results. According to my results I will be in a wheelchair before too long. One of my doctors said by the looks of it I should be dead. I have called the lab a dozen times trying to get an explanation of my results with no success. It says at the bottom of the test results that if one has any questions or needs interpretation of the test you should call their hotline number. When you do this they will either not return your call or refuse to explain results unless you are a doctor. They did tell one of my doctors that I probably did not have MS(they said the test was not used to diagnose MS but instead tell one whether or not they have had at least one attack of RRMS and will progress) Not sure what the difference is. Anyway they said I was most likely the 1% false positives. They said this because my doctor told them I had normal MRI's. How could I be that 1% when I tested not only high positive for M.S. but also with rapid progression? How could I have a false positive reading on both of these tests? So far I have been diagnosed with having RA,APS and SLE with CNS involvement. I now after seeing the results on GMS have my doubts. How can BOTH test results be a 1% false positives? Unless one of my original diagnosis has same glycans and can trigger false positives.
Any input would be appreciated.
Thanks
Torikat:
Sorry. Really didn't mean to offend you. You asked if anyone knew about it. I told you what I know from firsthand experience, from the direct report of G-minds' contractors (who have started a closed Forum to document and share their concerns about the company.) No one else who posted took the test, read the actual peer reviewed articles all the way through. And remember, I told you even the positive test result was not enough to convince my neuro. Also, if a test has genuine validity, a doctor's lab WILL draw for it. I've had plenty of questionable tests, some later discredited, some poo-pooed by the establishment, some just absurdly redundant. Some ordered by shyster docs.
In each case, if a local lab wouldn't draw for it, the doctor did; I never needed a subcontracted mobile phlebotomist to come to my home for the draw (think about it: I had to waive my HIPPAA, and now a fourth party subcontractor has my medical information and knows where I live.) This test is so revolutionary? Then why won't the best MS centers in the country even draw for it?
Guys:
There is a problem here because both MDs and limbolanders are reading Glycominds' promotional material as medically sound.But If you read the peer reviewed articles, and the actual test protocol, the test becomes much less impressive. Glycominds has clearly spent a lot of money on excellent search engine optimization; you have to dig deep to find the actual science. The posts here prove this, because y'all were left with the impression that this was a test for genetic markers.
It isn't.
With all good intentions, Torikat posted copy written by Glycominds that seemed to present a scientific breakthrough, but was really the web equivalent of the kinds of drug ads we see on TV. I was trying to show y'all the "fine print" because I have direct experience. I did not post out of malice (remember, I've got 17 o-bands, lesions,.and can't get treatment and I took the test!)--but because MS-ers and Limbolanders alike are starving for answers, and G-minds' may be preying on our need for hope and advocacy.
People who opt to take the test should do so with both eyes wide open.
LuLu:
Sorry. You're right. I forgot I could check profiles. But your response illustrates my point. Glycominds' MSdx test is NOT a genetic test. It is a comparative immuno-assay that derives from an unstable sample population. The altered anti-GAGA glycans the test identifies have not been demonstrated to have any relation to MS' disease process; nor have they been shown to be predominant in healthy patients who later develop MS. They simply have been identified as common among a pre-selected population, a population that the test itself alters. The test is statistical (perhaps even actuarial), but those statistics are flawed.
And Shoshin didn't actually explain the test; he, too, repeated G-minds' promotional stance, which is about 1 part science and 9 parts hope; if you trawl the net, you'll find the same copy quoted on literally hundreds of sites. But that's all it is: Marketing copy and PR talking points delivered by physicians.
It's a beautifully crafted marketing position: Limbolanders are in some cases literally dying for a way out of MS "purgatory"; and docs are desperate for a cheaper, lab-based Dx. G-minds market strategy is geared to work virally (in the marketing, not the technical sense) by attracting early adopters who will promote it. Torikat's post is proof of the soundness of their strategy: She found something and she passed it on. Shoshin found the next layer of their pitch, and passed it on. Voila! free placement for Glycominds on a popular Forum that aggressively excludes "trawlers".
It's fiendishly clever. (Remember: I took the test! I'm not even disputing the truth of its claims. I'm simply observing that both Torikat and Shoshin mistook promotional material for hard science. The price for doing so could be not only your medical privacy, but the very Dx the test claims to support.)
Think about this: Why aren't they advertising on this webpage? The right hand column of this page would be a great place for a proper ad and a link. So what gives? Why aren't they partnered with Big Pharma? Surely the test promises more Copaxone scrips, more customers. Why is this "promising scientific breakthrough" so little known that the National MS Society has never heard of it?? There's something wrong with this picture.
And yes, it would be fabulous if it could be that simple. But I wrote what I wrote because we can't alllow ourselves to surrender our judgment, or our HIPAA rights, on the mere promise of an easy answer. It's like buying a car: Ads use sexy promises to attract our attention and our money; but a wise car buyer looks under the hood at independent reviews, reliability ratings, etc.
Cainer:
We need to be clear, and what I'm telling y'all is not an isolated incident or a rant: G-minds is not offering genetic testing, they are peddling a self-validating blood test which is a glycan assay. The statistics are soft. The test is NOT an MS test. It's a glycan assay. All it does is compare your blood with the blood of people who've had a doc "confirm" their MS diagnosis.
And we've seen in this forum how many people's neurbots have reversed their diagnoses!
So if the diagnosis of MS is essentially discretionary, then what the test is doing is comparing your blood to a collective opinion that may (and probably will) change. If or when that happens, everyone whose Dx hinged on this test will find themselves in a bind.This has major potential repercussions for our care; and if the test is invalidated, it gives the docs just one more excuse to tell us it's all in our heads.
RedFlame:
It WOULD be wonderful to have such a tool, but this one isn't it. Not because the test is "wrong" but because the community of MS specialists still haven't agreed on what MS symptoms are: One says pain is no part of MS, another says you can't be diagnosed with MS after the age of 50, etc and so on.. We've seen this also in the Forum: One neurobot says "Conversion Disorder", the next says, "Definitely MS", and meanwhile there are battling factions: "MS is Lyme Disease"; "MS is caused by CCVIS"; "MS is genetic"; "MS is a symptom of Celiac disease" and so on and so on and so on.
Because neuros don't agree about who has MS, Glycomind's sample of "confirmed MS patients" is changing every day. If the source sample population is not stable, how can the test be anything more than descriptive?
Battling the medical establishment and this mysterious, chimerical disease is exhausting. It is natural to yearn for the Holy Grail of diagnosis. G-minds is offering what looks like the Grail. It is a calculated marketing strategy (something I confirmed with an anonymous source working with one of their labs) that deliberately obscures some very soft science. My fear is that there will be a backlash for which we will pay dearly.
o-bands
Sorry. Really didn't mean to offend you. You asked if anyone knew about it. I told you what I know from firsthand experience, from the direct report of G-minds' contractors (who have started a closed Forum to document and share their concerns about the company.) No one else who posted took the test, read the actual peer reviewed articles all the way through. And remember, I told you even the positive test result was not enough to convince my neuro. Also, if a test has genuine validity, a doctor's lab WILL draw for it. I've had plenty of questionable tests, some later discredited, some poo-pooed by the establishment, some just absurdly redundant. Some ordered by shyster docs.
In each case, if a local lab wouldn't draw for it, the doctor did; I never needed a subcontracted mobile phlebotomist to come to my home for the draw (think about it: I had to waive my HIPPAA, and now a fourth party subcontractor has my medical information and knows where I live.) This test is so revolutionary? Then why won't the best MS centers in the country even draw for it?
Guys:
There is a problem here because both MDs and limbolanders are reading Glycominds' promotional material as medically sound.But If you read the peer reviewed articles, and the actual test protocol, the test becomes much less impressive. Glycominds has clearly spent a lot of money on excellent search engine optimization; you have to dig deep to find the actual science. The posts here prove this, because y'all were left with the impression that this was a test for genetic markers.
It isn't.
With all good intentions, Torikat posted copy written by Glycominds that seemed to present a scientific breakthrough, but was really the web equivalent of the kinds of drug ads we see on TV. I was trying to show y'all the "fine print" because I have direct experience. I did not post out of malice (remember, I've got 17 o-bands, lesions,.and can't get treatment and I took the test!)--but because MS-ers and Limbolanders alike are starving for answers, and G-minds' may be preying on our need for hope and advocacy.
People who opt to take the test should do so with both eyes wide open.
LuLu:
Sorry. You're right. I forgot I could check profiles. But your response illustrates my point. Glycominds' MSdx test is NOT a genetic test. It is a comparative immuno-assay that derives from an unstable sample population. The altered anti-GAGA glycans the test identifies have not been demonstrated to have any relation to MS' disease process; nor have they been shown to be predominant in healthy patients who later develop MS. They simply have been identified as common among a pre-selected population, a population that the test itself alters. The test is statistical (perhaps even actuarial), but those statistics are flawed.
And Shoshin didn't actually explain the test; he, too, repeated G-minds' promotional stance, which is about 1 part science and 9 parts hope; if you trawl the net, you'll find the same copy quoted on literally hundreds of sites. But that's all it is: Marketing copy and PR talking points delivered by physicians.
It's a beautifully crafted marketing position: Limbolanders are in some cases literally dying for a way out of MS "purgatory"; and docs are desperate for a cheaper, lab-based Dx. G-minds market strategy is geared to work virally (in the marketing, not the technical sense) by attracting early adopters who will promote it. Torikat's post is proof of the soundness of their strategy: She found something and she passed it on. Shoshin found the next layer of their pitch, and passed it on. Voila! free placement for Glycominds on a popular Forum that aggressively excludes "trawlers".
It's fiendishly clever. (Remember: I took the test! I'm not even disputing the truth of its claims. I'm simply observing that both Torikat and Shoshin mistook promotional material for hard science. The price for doing so could be not only your medical privacy, but the very Dx the test claims to support.)
Think about this: Why aren't they advertising on this webpage? The right hand column of this page would be a great place for a proper ad and a link. So what gives? Why aren't they partnered with Big Pharma? Surely the test promises more Copaxone scrips, more customers. Why is this "promising scientific breakthrough" so little known that the National MS Society has never heard of it?? There's something wrong with this picture.
And yes, it would be fabulous if it could be that simple. But I wrote what I wrote because we can't alllow ourselves to surrender our judgment, or our HIPAA rights, on the mere promise of an easy answer. It's like buying a car: Ads use sexy promises to attract our attention and our money; but a wise car buyer looks under the hood at independent reviews, reliability ratings, etc.
Cainer:
We need to be clear, and what I'm telling y'all is not an isolated incident or a rant: G-minds is not offering genetic testing, they are peddling a self-validating blood test which is a glycan assay. The statistics are soft. The test is NOT an MS test. It's a glycan assay. All it does is compare your blood with the blood of people who've had a doc "confirm" their MS diagnosis.
And we've seen in this forum how many people's neurbots have reversed their diagnoses!
So if the diagnosis of MS is essentially discretionary, then what the test is doing is comparing your blood to a collective opinion that may (and probably will) change. If or when that happens, everyone whose Dx hinged on this test will find themselves in a bind.This has major potential repercussions for our care; and if the test is invalidated, it gives the docs just one more excuse to tell us it's all in our heads.
RedFlame:
It WOULD be wonderful to have such a tool, but this one isn't it. Not because the test is "wrong" but because the community of MS specialists still haven't agreed on what MS symptoms are: One says pain is no part of MS, another says you can't be diagnosed with MS after the age of 50, etc and so on.. We've seen this also in the Forum: One neurobot says "Conversion Disorder", the next says, "Definitely MS", and meanwhile there are battling factions: "MS is Lyme Disease"; "MS is caused by CCVIS"; "MS is genetic"; "MS is a symptom of Celiac disease" and so on and so on and so on.
Because neuros don't agree about who has MS, Glycomind's sample of "confirmed MS patients" is changing every day. If the source sample population is not stable, how can the test be anything more than descriptive?
Battling the medical establishment and this mysterious, chimerical disease is exhausting. It is natural to yearn for the Holy Grail of diagnosis. G-minds is offering what looks like the Grail. It is a calculated marketing strategy (something I confirmed with an anonymous source working with one of their labs) that deliberately obscures some very soft science. My fear is that there will be a backlash for which we will pay dearly.
o-bands
yeh what lulu said- 4 some reson -it showed a -bad gene- wished id asked questions- but apparently there is something to it what torikat said- remember we all in same boat-
It would be a wonderful tool to diagnose people early for positive intervention. Like Rheumatoid Arthritis and other diseases that have at least one blood test that identifies a disease.
I hope we will have it here someday
Red
I hope we will have it here someday
Red
Torikat has been through this site a number of times and there is no reason to believe that this post is a plant. We often find information put out by pharmas and bring it here to use as part of a question. As you saw, Shoshin did an excellent job of explaining the test, which is what this site is very good at - helping us to understand some of these more complex ideas.
Since you are relatively new here, I can offer the tip to check a person's profile and look at some of their previous posts. This is always a good way to check if a person is legit or just another snake oil salesperson. And yes, we do get some of those through here looking for easy marks wanting to part with money.
As for genetic markers- there are a few that have already been identified as signs that the person is probably going to develop MS or even that the disease is already present but not yet clinically identifiable. Every neuro I have heard talk about this in the past year is excited - google "genetic markers for MS" and there is quite a bit to read on the topic. There isn't a good commercial application to this knowedlge yet as I understand it.
I know nothing about this particular company and their tests and I am sorry you had such a difficult time with them.
L
Since you are relatively new here, I can offer the tip to check a person's profile and look at some of their previous posts. This is always a good way to check if a person is legit or just another snake oil salesperson. And yes, we do get some of those through here looking for easy marks wanting to part with money.
As for genetic markers- there are a few that have already been identified as signs that the person is probably going to develop MS or even that the disease is already present but not yet clinically identifiable. Every neuro I have heard talk about this in the past year is excited - google "genetic markers for MS" and there is quite a bit to read on the topic. There isn't a good commercial application to this knowedlge yet as I understand it.
I know nothing about this particular company and their tests and I am sorry you had such a difficult time with them.
L
I ran across the website while I was doing some reading on several other forums I belong too and I was just curious to see if anybody has had this done and if so what the outcome was. I had blood work done before that they sent out a tech to my home to draw the blood and it was sent off for testing so I have had testing done at a special lab. I am not advertising anything just wanted other people's opinion and if this would help us in limboland to finally get some answers
I posted on this earlier this AM. I've had the test done. I cannot recommend it. First, I came back "89% positive", meaning I have MS and am at risk for decline. But my Neurobot remains unswayed.
The only reason a company with a "validated" test would pick up the tab is that the test is not yet accepted as legitimate. I discussed this with an attorney, and he said it sounds like they're hoping to raise revenue from insurance companies who DO pay, and are picking up the tab on the rest because it greatly broadens their data-base and visibility, which will ultimately legitimize the test. In essence, people who take the test are actually part of its clinical trial.
I looked into the company and if I'd known then what I know now, I wouldn't have agreed to the test. Some red flags: You have to sign a contract that essentially waives your HIPAA rights. Shoshin is right, you do have to send it to their lab; but draw stations do this all the time. However: None of the labs in most states will draw for gMSdx; the company hires subcontracted mobile phlebotomists, many of whom are concerned about this company and this test, and many of whom are having a hard time getting paid.. The company do not appear to have an actual US presence; when you try to call, you get either a billing office in Oregon, or a lab in CA. They claim to have a Privacy Officer, but neither the billing office nor the lab even have direct numbers for the business, and the PO Box for queries is out of date. The company is based in Israel and its US partner companies are NOT healthcare companies; this means your HIPAA rights don't apply, and the release they make you sign states that they reserve the right to use your information any way they please.
The National MS Society has never heard of them. Why would the MS Foundation know, but not the National MS Society?
The info from MS Foundation sounds like a Press Release: When I called NMSS a month ago to find out about this test, they'd never even heard about it. In fact, torikat32, your post sounds like a plant. I hope you're just quoting the website, but given that I posted on this just a few hours ago, it's a little strange that you post without referencing other posts about MS blood tests, and your post is essentially a press release for Glycominds. I would hate to think any company was using this forum to try and promote itself.
Regarding the validity and efficacy of the test: There are not "numerous" peer reviewed studies. There is one peer reviewed article that has a positive title, but if you read the full text, the conclusion is that the test has limited value.
The bottomline is the statistics are squirrelly: If the test is based on comparing test samples with known biomarkers from "confirmed" MS patients, each positive actually recalibrates the statistical parameters. All a positive really means is that things in your blood are like things in the blood of people confirmed with MS. You get added to the group of positives, and the test seems to be valid. But staistically, the test is set up so that it validates itself everytime it is used. True validation is when an independent research team is able to coax the same results claimed by the company.
Torikat32, I don't mean to insult you if you're posting sincerely; but given that I cautioned the Forum about this just this morning, it's a little odd that a "commercial" for G-minds shows up within a few hours. The forum is a place for sharing, not for advertising. G-minds has aggressively optimized its web presence so that any real info about them is buried. If these tests were as valid as claimed, labs would be drawing for them, the NMSS would issue a press release and would feature them prominently.
I'm sorry, but in my opinion there's something hinky about this (and my concerns were echoed resoundingly by the phlebotomist who came to do my draw.) Maybe the test will receive outside validation. Maybe it is a useful addition to the arsonal of MS tests. Maybe I am wrong. I hope I am! But no "validated" blood test asks that you sign away your HIPAA rights as a condition of receiving the test.
The reason there is no definitive blood (or any other) test for MS is MS does not have a known pathogen. There is nothing to point at and say, "See. There's the MS virus." Or "See. There are the MS antibodies."
The only reason a company with a "validated" test would pick up the tab is that the test is not yet accepted as legitimate. I discussed this with an attorney, and he said it sounds like they're hoping to raise revenue from insurance companies who DO pay, and are picking up the tab on the rest because it greatly broadens their data-base and visibility, which will ultimately legitimize the test. In essence, people who take the test are actually part of its clinical trial.
I looked into the company and if I'd known then what I know now, I wouldn't have agreed to the test. Some red flags: You have to sign a contract that essentially waives your HIPAA rights. Shoshin is right, you do have to send it to their lab; but draw stations do this all the time. However: None of the labs in most states will draw for gMSdx; the company hires subcontracted mobile phlebotomists, many of whom are concerned about this company and this test, and many of whom are having a hard time getting paid.. The company do not appear to have an actual US presence; when you try to call, you get either a billing office in Oregon, or a lab in CA. They claim to have a Privacy Officer, but neither the billing office nor the lab even have direct numbers for the business, and the PO Box for queries is out of date. The company is based in Israel and its US partner companies are NOT healthcare companies; this means your HIPAA rights don't apply, and the release they make you sign states that they reserve the right to use your information any way they please.
The National MS Society has never heard of them. Why would the MS Foundation know, but not the National MS Society?
The info from MS Foundation sounds like a Press Release: When I called NMSS a month ago to find out about this test, they'd never even heard about it. In fact, torikat32, your post sounds like a plant. I hope you're just quoting the website, but given that I posted on this just a few hours ago, it's a little strange that you post without referencing other posts about MS blood tests, and your post is essentially a press release for Glycominds. I would hate to think any company was using this forum to try and promote itself.
Regarding the validity and efficacy of the test: There are not "numerous" peer reviewed studies. There is one peer reviewed article that has a positive title, but if you read the full text, the conclusion is that the test has limited value.
The bottomline is the statistics are squirrelly: If the test is based on comparing test samples with known biomarkers from "confirmed" MS patients, each positive actually recalibrates the statistical parameters. All a positive really means is that things in your blood are like things in the blood of people confirmed with MS. You get added to the group of positives, and the test seems to be valid. But staistically, the test is set up so that it validates itself everytime it is used. True validation is when an independent research team is able to coax the same results claimed by the company.
Torikat32, I don't mean to insult you if you're posting sincerely; but given that I cautioned the Forum about this just this morning, it's a little odd that a "commercial" for G-minds shows up within a few hours. The forum is a place for sharing, not for advertising. G-minds has aggressively optimized its web presence so that any real info about them is buried. If these tests were as valid as claimed, labs would be drawing for them, the NMSS would issue a press release and would feature them prominently.
I'm sorry, but in my opinion there's something hinky about this (and my concerns were echoed resoundingly by the phlebotomist who came to do my draw.) Maybe the test will receive outside validation. Maybe it is a useful addition to the arsonal of MS tests. Maybe I am wrong. I hope I am! But no "validated" blood test asks that you sign away your HIPAA rights as a condition of receiving the test.
The reason there is no definitive blood (or any other) test for MS is MS does not have a known pathogen. There is nothing to point at and say, "See. There's the MS virus." Or "See. There are the MS antibodies."
Idk, I think some of these stupid dr's may end up using any MS test to exclude rather than dx. Meaning, I can see someone meeting all the criteria with lesions, sx, LP, etc then the bloodwork coming back negative so they refuse to dx.
Just seems these dr's are sometime so idiotic when dx'ing MS.
Julie
Just seems these dr's are sometime so idiotic when dx'ing MS.
Julie
hi!! i remember my neuro telling me i had a bad gene?? but- i didnt want to hear it at the time- so i didnt ask- anything about it, so i bet this is what your talkin about??
if not lol just ignore me. i just wondering
if not lol just ignore me. i just wondering
It is very interesting, though, and it would be wonderful to have the option of a blood test for MS. Might be worth a shot since any doctor, even your PCP, could order it.
sho
sho
I do not think this in widespread use, but here is some more info from the MS Foundation:
*****
10/29/2010
An assay now commercially available throughout most of the country utilizes validated MS biomarkers to predict disease progression. Glycominds’ gMS™ Dx test for MS measures the level of anti-glycan antibodies in the blood. The test was developed following research findings suggesting that people with higher levels of specific anti-glycan antibodies either have MS or are likely to have more active MS leading towards higher EDSS scores despite treatment with standard first line drug therapies.
There are two uses for the gMS Dx test, according to Glycominds, a molecular diagnostics company: The single marker diagnosis test lets physicians identify a person with clinically isolated syndrome who will likely convert to clinically definite MS. This marker is very specific (meaning the likelihood of a false positive result is very low, in some studies it is 100 percent specific), but will only pick up about 40 to 50 percent of people with MS. Therefore it can be used to "rule in" MS but cannot be used to "rule out" MS.
The second test looks at four markers and identifies people who are significantly more likely to progress at least one EDSS score within five years despite treatment. These people can be candidates for more aggressive therapy or just very careful monitoring and switching therapy at the first time there is a clinical event when on therapy.
Ben Thrower, M.D., MSF’s senior medical advisor, acknowledges the role of biomarkers and tests such as the gMS Dx in diagnosing and treating MS: “This blood test has been shown to be more common in people with MS as compared to other neurological conditions. So far the test does not appear to be sensitive enough to be used alone to diagnose MS, but could be used to help confirm the diagnosis. A negative blood test would not absolutely rule out MS,” he says. “In people presenting with their first MS relapse, high levels of the antibody were associated with less time until their next attack and a higher likelihood of progression of disability.”
http://www.msfacts.org/news-details.aspx?newsID=72
****
The first thing to notice is that people who test positive are very, very likely to have MS (the low rate of false positives). So if you did test positive this would be very strong evidence. The second thing to notice is that many people who actually have MS will test negative (at least 50%)--this is the thing that you have to get the neuro to pay attention to since so many of them think that negative LPs or MRIs definitively rule out MS. Interestingly, the neuro quoted thought he would only use if for confirming dx (maybe in people where it's unclear?)
The other thing I'd point out is that since they are waiving the patient portion of the cost, this is probably a very expensive test that will have to be sent to their lab. I had a genetic test for a hereditary neurological condition that my brother has and it was pricey. That was a long time ago, but it was over $1000 since my co-pay was over $200. Apparently insurance companies don't always pay for genetic tests (at least at that time) so they had a deal where if you paid the co-pay upfront, they wouldn't bill you for the rest even if the insurance company refused to pay.
From the Glycominds site:
***
Numerous studies show the gMS®Dx test delivers consistent, reproducible and accurate results. The gM®DX test provides clinically valuable information clinicians can use to help make decisions about the likelihood of having Multiple Sclerosis, based on approximately 1,500 patients studied to date. The gMS®Dx test confirms your diagnosis opinions and gives patients more confidence in their decisions regarding treatment.
http://www.glycominds.com/Products.asp
***
So they've only tested about 1500 people in their trials.
It seems pretty new and I suspect not in widespread use probably because of price, lack of knowledge in the medical community due to the newness and the fact that it will only pick up 40-50% of people with MS.
sho
*****
10/29/2010
An assay now commercially available throughout most of the country utilizes validated MS biomarkers to predict disease progression. Glycominds’ gMS™ Dx test for MS measures the level of anti-glycan antibodies in the blood. The test was developed following research findings suggesting that people with higher levels of specific anti-glycan antibodies either have MS or are likely to have more active MS leading towards higher EDSS scores despite treatment with standard first line drug therapies.
There are two uses for the gMS Dx test, according to Glycominds, a molecular diagnostics company: The single marker diagnosis test lets physicians identify a person with clinically isolated syndrome who will likely convert to clinically definite MS. This marker is very specific (meaning the likelihood of a false positive result is very low, in some studies it is 100 percent specific), but will only pick up about 40 to 50 percent of people with MS. Therefore it can be used to "rule in" MS but cannot be used to "rule out" MS.
The second test looks at four markers and identifies people who are significantly more likely to progress at least one EDSS score within five years despite treatment. These people can be candidates for more aggressive therapy or just very careful monitoring and switching therapy at the first time there is a clinical event when on therapy.
Ben Thrower, M.D., MSF’s senior medical advisor, acknowledges the role of biomarkers and tests such as the gMS Dx in diagnosing and treating MS: “This blood test has been shown to be more common in people with MS as compared to other neurological conditions. So far the test does not appear to be sensitive enough to be used alone to diagnose MS, but could be used to help confirm the diagnosis. A negative blood test would not absolutely rule out MS,” he says. “In people presenting with their first MS relapse, high levels of the antibody were associated with less time until their next attack and a higher likelihood of progression of disability.”
http://www.msfacts.org/news-details.aspx?newsID=72
****
The first thing to notice is that people who test positive are very, very likely to have MS (the low rate of false positives). So if you did test positive this would be very strong evidence. The second thing to notice is that many people who actually have MS will test negative (at least 50%)--this is the thing that you have to get the neuro to pay attention to since so many of them think that negative LPs or MRIs definitively rule out MS. Interestingly, the neuro quoted thought he would only use if for confirming dx (maybe in people where it's unclear?)
The other thing I'd point out is that since they are waiving the patient portion of the cost, this is probably a very expensive test that will have to be sent to their lab. I had a genetic test for a hereditary neurological condition that my brother has and it was pricey. That was a long time ago, but it was over $1000 since my co-pay was over $200. Apparently insurance companies don't always pay for genetic tests (at least at that time) so they had a deal where if you paid the co-pay upfront, they wouldn't bill you for the rest even if the insurance company refused to pay.
From the Glycominds site:
***
Numerous studies show the gMS®Dx test delivers consistent, reproducible and accurate results. The gM®DX test provides clinically valuable information clinicians can use to help make decisions about the likelihood of having Multiple Sclerosis, based on approximately 1,500 patients studied to date. The gMS®Dx test confirms your diagnosis opinions and gives patients more confidence in their decisions regarding treatment.
http://www.glycominds.com/Products.asp
***
So they've only tested about 1500 people in their trials.
It seems pretty new and I suspect not in widespread use probably because of price, lack of knowledge in the medical community due to the newness and the fact that it will only pick up 40-50% of people with MS.
sho
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