Aa
Individualized MS
Last night I was at a dinner/panel thing with MS experts. One of the doctors, the head of a well-known MS Center, several times mentioned that there likely are various causes for MS. At one point he said that treatment response (i.e. to DMDs) probably depends on "the perfect storm that created your MS."
They were thoughtful about Epstein-Barr. They were derisive of CCSVI. They were disappointed that T-cell vaccines have not shown positive results. They were surprised to discover that MS attacks the cells of the eye (not just the optic nerve), which have no myelin. They were optimistic, dare I say excited, about stem cells from bone marrow demonstrating the ability to assist in remyelination.
So I have been thinking... wondering... Well, it seems like PPMS is a different disease than the relapsing forms of MS. They pointed out last night that inflammation is not really a problem in PPMS, whereas it is significant in RRMS. But it seems that not all RRMS is created equal either. One doc expressed something like frustration or at least confusion when talking about some of his patients being in remission for 20 years on Avonex (some from the original clinical studies), while others have no response to any of the CRAB drugs. I wonder if there are several disorders lumped together as MS. That maybe in the future we'll find out that certain "types" of RRMS are caused by one thing and others are caused by another thing. I'm sure I am not the first person to wonder this. It's just so disappointing that after years of study, these top neurologists have so little understanding of how MS works. At least they were pretty honest about it!
And of course I wondered what "perfect storm" created my MS. I guess I'll never know. But I am a very curious person!
They were thoughtful about Epstein-Barr. They were derisive of CCSVI. They were disappointed that T-cell vaccines have not shown positive results. They were surprised to discover that MS attacks the cells of the eye (not just the optic nerve), which have no myelin. They were optimistic, dare I say excited, about stem cells from bone marrow demonstrating the ability to assist in remyelination.
So I have been thinking... wondering... Well, it seems like PPMS is a different disease than the relapsing forms of MS. They pointed out last night that inflammation is not really a problem in PPMS, whereas it is significant in RRMS. But it seems that not all RRMS is created equal either. One doc expressed something like frustration or at least confusion when talking about some of his patients being in remission for 20 years on Avonex (some from the original clinical studies), while others have no response to any of the CRAB drugs. I wonder if there are several disorders lumped together as MS. That maybe in the future we'll find out that certain "types" of RRMS are caused by one thing and others are caused by another thing. I'm sure I am not the first person to wonder this. It's just so disappointing that after years of study, these top neurologists have so little understanding of how MS works. At least they were pretty honest about it!
And of course I wondered what "perfect storm" created my MS. I guess I'll never know. But I am a very curious person!
Regarding the CCSVI...
I have researched and discussed this potential treatment quite extensively over the past few years. Actually, the first person who talked to me about this was my sister-in-law who is a retired OB-GYN and who also lives in Canada. She was so excited when she first heard about it over 2 years ago that she immediately called me up to tell me all about it.
Recently I found a doctor, and interventional radiologist who did my vein ablation in my legs, who also had been trained by Zamboni's team and certified to perform CCSVI. I went through with the ultrasound imaging to see if I was a candidate for it. We found that I met 4 of the 5 criteria and was an excellent candidate and would more than likely benefit from it. I was in the process of checking on the insurance issues, whether they would pay for it or not, when I had this relapse.
Since having this relapse, I am more determined than ever to try this procedure. I have a very good understanding of the risks and I have confidence in this doctor that at some point I am going to follow through with it.
The main concern I have other than the remote but possible risks is what my neurologist has to say about it. The other concern is the cost especially now that I have a huge hospital co-pay to take care of. Other than that, I am ready to give it a try. My belief is that if you have venous insufficiency in one area, as I had in my legs (moderate to severe), then it stands to reason that there would be issues elsewhere such as was found in my neck veins. If that helps with my symptoms and MS, then great. The risks in my opinion are not much greater than the risks of the drugs I am taking to otherwise control my MS.
That is just my 2-cents worth.
Julie
I have researched and discussed this potential treatment quite extensively over the past few years. Actually, the first person who talked to me about this was my sister-in-law who is a retired OB-GYN and who also lives in Canada. She was so excited when she first heard about it over 2 years ago that she immediately called me up to tell me all about it.
Recently I found a doctor, and interventional radiologist who did my vein ablation in my legs, who also had been trained by Zamboni's team and certified to perform CCSVI. I went through with the ultrasound imaging to see if I was a candidate for it. We found that I met 4 of the 5 criteria and was an excellent candidate and would more than likely benefit from it. I was in the process of checking on the insurance issues, whether they would pay for it or not, when I had this relapse.
Since having this relapse, I am more determined than ever to try this procedure. I have a very good understanding of the risks and I have confidence in this doctor that at some point I am going to follow through with it.
The main concern I have other than the remote but possible risks is what my neurologist has to say about it. The other concern is the cost especially now that I have a huge hospital co-pay to take care of. Other than that, I am ready to give it a try. My belief is that if you have venous insufficiency in one area, as I had in my legs (moderate to severe), then it stands to reason that there would be issues elsewhere such as was found in my neck veins. If that helps with my symptoms and MS, then great. The risks in my opinion are not much greater than the risks of the drugs I am taking to otherwise control my MS.
That is just my 2-cents worth.
Julie
Thanks for the link. I read that article and several others. It sounds like the neuros on the panel attended that session at ECTRIMS... They definitely had the talking points down.
I do not know what to think about CCSVI. I wish the surgery had less risks, as I think many of us would say, "Why not? Can't hurt and what if it helps."
I do not know what to think about CCSVI. I wish the surgery had less risks, as I think many of us would say, "Why not? Can't hurt and what if it helps."
Great discussion - it reminds me of the ones we used to often have here. There is so much news swirling out there about MS, it is important that we learn what we can to carry on informed chats like this.
I read the blog post from Julie S. about CCSVI and then looked at other reports out of ECTRIMS. There is a very good medical website that has a number of links to ECTRIMS CCSVI articles which will keep everyone busy reading for a while. It is a medical site and you have to "join" to view the entire article, but they do have a category for patients to also join this site. There are also other CCSVI report links at the bottom of the page.
http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29266
Thanks beachcomber for sharing all this informaiton.
best, Lulu
I read the blog post from Julie S. about CCSVI and then looked at other reports out of ECTRIMS. There is a very good medical website that has a number of links to ECTRIMS CCSVI articles which will keep everyone busy reading for a while. It is a medical site and you have to "join" to view the entire article, but they do have a category for patients to also join this site. There are also other CCSVI report links at the bottom of the page.
http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29266
Thanks beachcomber for sharing all this informaiton.
best, Lulu
re: Radiation is not necessarily a good Myeloma treatment. Radiation can only treat some isolated bone disease or an isolated tumor. Full blown MM is usually a systemic disease in all you bones so chemo etc is the norm. Lymphoma is often treatment with Radiation though
What a great explanation on the genetic risk. That makes a much more sense than just looking at a percentage. I wish I were better with math and statistics. It would be a fun project to collect the data from all of those studies and crunch the numbers.
What the wee percentage numbers don't tell us is, this is averaged across the entire population. In instances say like in my family, where one was diagnosed at the age of 35, another at 50, and two others not diagnosed - one at 65 and the other at 45, and the youngest one only officially diagnosed for school purposed by a psychiatrist - not neurologist (my son seems to have episodes of color vision punctuated with color blindness)., they could have missed a whole lot simply by when they collected the info.
Since they're specifically looking for dx cases of 'MS', and there are several different variations of MS, some are misdiagnosed to have it, some are misdiagnosed with something else or nothing at all, how can a person look at that wee percentage, then look back on the family history and say 'whew,' my chances of getting this are slim to none. Why worry?
I sent out for one of those genetic test at 23andMe. I can't remember who on this forum pointed me to it, but I'm waiting on my results. Reading the genetic info makes it sound like the chances of having this are mighty slim even if you do test positive for the three genes they can identify. But then after reading the explanation at that link, knowing I've smoked since a teen, I've been lactose intolerant since my mid-20s, there might be more of a risk than I've been deluding myself into thinking.
What the wee percentage numbers don't tell us is, this is averaged across the entire population. In instances say like in my family, where one was diagnosed at the age of 35, another at 50, and two others not diagnosed - one at 65 and the other at 45, and the youngest one only officially diagnosed for school purposed by a psychiatrist - not neurologist (my son seems to have episodes of color vision punctuated with color blindness)., they could have missed a whole lot simply by when they collected the info.
Since they're specifically looking for dx cases of 'MS', and there are several different variations of MS, some are misdiagnosed to have it, some are misdiagnosed with something else or nothing at all, how can a person look at that wee percentage, then look back on the family history and say 'whew,' my chances of getting this are slim to none. Why worry?
I sent out for one of those genetic test at 23andMe. I can't remember who on this forum pointed me to it, but I'm waiting on my results. Reading the genetic info makes it sound like the chances of having this are mighty slim even if you do test positive for the three genes they can identify. But then after reading the explanation at that link, knowing I've smoked since a teen, I've been lactose intolerant since my mid-20s, there might be more of a risk than I've been deluding myself into thinking.
Yes, OT. Sorry for the sidetrack, but I'm convinced that autism spectrum disorders are autoimmune. In fact, there are neurologists in the area researching the treatment of autism with steroids.
I was using that as an example of yet another nervous system disease in my family, which now spans four consecutive generations. But they all have been different expressions. How could that be? There must be a connection somehow.
I hope this bone marrow treatment turns out to be a cure. Wouldn't that be something?
I was using that as an example of yet another nervous system disease in my family, which now spans four consecutive generations. But they all have been different expressions. How could that be? There must be a connection somehow.
I hope this bone marrow treatment turns out to be a cure. Wouldn't that be something?
This is why I still read here. I don't have ms, I have multiple myeloma, a completely different illness, but since it is a non curable cancer, I live with similar struggles. Wandering how long remission I will have, when will I relapse, will the meds work again etc.. they do not know what causes MM, they suspect multiple causes, and that there are multiple types of Myelama causes by different things. Toxic exposure (petroleum etc) has been said to cause MM, but I have minimal toxic exposure, grew up suburban. Usually older people get MM, but I'm only 33. They also suspect a virus may be involved as MM is essentially an immune cell gone haywire.
Thanks, Alex. Very interesting!
Jen, I read that article. It was what got me looking into CCSVI. Did you read the comments on it? Wow, different tone than our discussions here. ;)
I also am a hard stick and have blood flow issues. If I lean my head a certain way, I can hear my heartbeat--the jugular vein passing through the middle ear, I guess. It's weird. And my circulation is terrible. Cold hands, cold feet--like ice. It's always annoying when people try to start an IV or draw blood from the veins in my hands, because they can be stuck but then they don't flow. Dry wells.
Anyway, I agree that the CCSVI theory makes for interesting reading. And in a way I hope it is true, because it seems fixable. More fixable than what we're working with now.
Jen, I read that article. It was what got me looking into CCSVI. Did you read the comments on it? Wow, different tone than our discussions here. ;)
I also am a hard stick and have blood flow issues. If I lean my head a certain way, I can hear my heartbeat--the jugular vein passing through the middle ear, I guess. It's weird. And my circulation is terrible. Cold hands, cold feet--like ice. It's always annoying when people try to start an IV or draw blood from the veins in my hands, because they can be stuck but then they don't flow. Dry wells.
Anyway, I agree that the CCSVI theory makes for interesting reading. And in a way I hope it is true, because it seems fixable. More fixable than what we're working with now.
Some very interesting research was revealed at the latest ECTRIMS conference - Julie Stachowiak over at about.com has blogged about one of the presentations she attended. It's worth reading.
http://ms.about.com/b/2011/10/25/a-ccsvi-breakthrough-i-think-so.htm?nl=1
"Dr. Robert Fox's team at Cleveland Clinic figured out a way to look directly at the veins in question without causing too much distress to the patients. They simply waited until those people were dead.
They then cut out the veins, fixed them with silicone and looked at them with their eye. They touched them and cut them open and poked around. And they found some pretty funky stuff, let me tell you.
To sum it up - there were veins from 7 people with MS and 6 people without. When the group measured the thickness of the vein walls - what has been looked at to date, there was no difference in the veins of both groups. Some people in both groups had thickened vein walls, making the venous opening small.
However, when they cut those veins open and looked at them, there were all sorts of bizarre things in the veins of 6 out of 7 of the people with MS. I attended the live presentation at ECTRIMS 2011 and it was a little "graphic," but researchers showed pictures of flaps, and deformed valves and weird membranes - all of which could impede blood flow through these veins. These were only found in one of the people without MS.
Weird, right? Looking at these things, one could see that these are very delicate, tissue-paper thin structures that could not be seen on static images. The only way that one could see how these blocked blood flow would be to watch a dynamic image of the blood flowing. Given the nature of these structures, it is also possible that the way a person is positioned when the test is done could also impact whether the slow or stopped blood flow can even be seen - it might only happen when the person is sitting or standing."
I think this is very interesting - I've had problems with blood flow for a while. Blood clots, venous insufficiency, the whole thing with the blood pounding in my neck and feeling like my head was full of blood... The nurses commented that my veins were small and twisty when they tried to get an IV in, and again when they tried to take blood. (If you don't like needles, don't get a blood clot!)
http://ms.about.com/b/2011/10/25/a-ccsvi-breakthrough-i-think-so.htm?nl=1
"Dr. Robert Fox's team at Cleveland Clinic figured out a way to look directly at the veins in question without causing too much distress to the patients. They simply waited until those people were dead.
They then cut out the veins, fixed them with silicone and looked at them with their eye. They touched them and cut them open and poked around. And they found some pretty funky stuff, let me tell you.
To sum it up - there were veins from 7 people with MS and 6 people without. When the group measured the thickness of the vein walls - what has been looked at to date, there was no difference in the veins of both groups. Some people in both groups had thickened vein walls, making the venous opening small.
However, when they cut those veins open and looked at them, there were all sorts of bizarre things in the veins of 6 out of 7 of the people with MS. I attended the live presentation at ECTRIMS 2011 and it was a little "graphic," but researchers showed pictures of flaps, and deformed valves and weird membranes - all of which could impede blood flow through these veins. These were only found in one of the people without MS.
Weird, right? Looking at these things, one could see that these are very delicate, tissue-paper thin structures that could not be seen on static images. The only way that one could see how these blocked blood flow would be to watch a dynamic image of the blood flowing. Given the nature of these structures, it is also possible that the way a person is positioned when the test is done could also impact whether the slow or stopped blood flow can even be seen - it might only happen when the person is sitting or standing."
I think this is very interesting - I've had problems with blood flow for a while. Blood clots, venous insufficiency, the whole thing with the blood pounding in my neck and feeling like my head was full of blood... The nurses commented that my veins were small and twisty when they tried to get an IV in, and again when they tried to take blood. (If you don't like needles, don't get a blood clot!)
Hey beachcomber,
Thought you may be interested in the research that I came across about the genetic link:
http://www.overcomingmultiplesclerosis.org/About-MS/What-is-MS/Genetics-of-MS/
Blessings
Alex
Thought you may be interested in the research that I came across about the genetic link:
http://www.overcomingmultiplesclerosis.org/About-MS/What-is-MS/Genetics-of-MS/
Blessings
Alex
I thought of my great grandfather, whom my mother describes as "fine and then suddenly in a wheelchair." They chalked it up to nerve gas exposure during his youth, in WWI. He became disabled during the 50s, so who knows? No good imaging.
But the genetic link thing is weaker than I realized. 30% for identical twins. 3% for siblings. I don't know what it is for the general public, though.
But the genetic link thing is weaker than I realized. 30% for identical twins. 3% for siblings. I don't know what it is for the general public, though.
I know that they have been studying the eye thing for a while... I guess they haven't gotten over their surprise. ;)
Or maybe they will be surprised until they figure out WHY! The more I learn, the more I believe that they do not know a darn thing about MS.
Or maybe they will be surprised until they figure out WHY! The more I learn, the more I believe that they do not know a darn thing about MS.
They did discuss smoking and secondhand smoke exposure as a risk factor for MS. Toxins. Interesting...
I have thought about autism being a group of disorders lumped together until we can sort them out. I work with kids who have autism... definitely thought about that, as there seem to be different types. And I have thought about environmental triggers. But you're right, that's a little OT. ;)
It was in Ellicott City. But it might as well have been a world away with you still in the big house, hm? I hope you're getting closer to parole!
They essentially laughed in our faces about CCSVI. They commented that no one else can replicate Zamboni's findings, and that it seems impossible that 100% of the people he saw had CCSVI as he claimed. They found it amusing that the Buffalo study was conducted by a Zamboni trainee (and I guess it showed that 25% of regular people also have CCSVI... so maybe it's coincidental in people with MS). They did admit that standardization of methods has been a major problem in the CCSVI research--meaning that there is no agreed-upon definition of CCSVI nor set method for fixing it.
They emphasized that we should absolutely not have the surgery, because it can have complications and some people have died from it. I thought that was rather hypocritical of them, given that they regularly prescribe medications that can cause complications (side effects) or death.
Anyway, so they are not fans of the CCSVI theory. But they got one detail wrong about Zamboni's background. He is a vascular surgeon, not a neurologist (they stated that he is a neurologist who does not specialize in MS). Made me wonder how much they have looked into it--I only checked it out for a couple of hours and I found out that the guy isn't a neuro.
They essentially laughed in our faces about CCSVI. They commented that no one else can replicate Zamboni's findings, and that it seems impossible that 100% of the people he saw had CCSVI as he claimed. They found it amusing that the Buffalo study was conducted by a Zamboni trainee (and I guess it showed that 25% of regular people also have CCSVI... so maybe it's coincidental in people with MS). They did admit that standardization of methods has been a major problem in the CCSVI research--meaning that there is no agreed-upon definition of CCSVI nor set method for fixing it.
They emphasized that we should absolutely not have the surgery, because it can have complications and some people have died from it. I thought that was rather hypocritical of them, given that they regularly prescribe medications that can cause complications (side effects) or death.
Anyway, so they are not fans of the CCSVI theory. But they got one detail wrong about Zamboni's background. He is a vascular surgeon, not a neurologist (they stated that he is a neurologist who does not specialize in MS). Made me wonder how much they have looked into it--I only checked it out for a couple of hours and I found out that the guy isn't a neuro.
It is interesting that the panel mentioned how MS can attack the cells of the eye and not just the myelin in the optic nerve. I will share this with my neuro and see what he thinks.
What did you mean that they were "derisive" about CCSVI? I am not sure what that means.
Where was this talk held? I would have been very interested to attend if it were closer to DC. But then again, I am incarcerated in the hospital still. :(
Thanks for sharing this with us.
Julie
What did you mean that they were "derisive" about CCSVI? I am not sure what that means.
Where was this talk held? I would have been very interested to attend if it were closer to DC. But then again, I am incarcerated in the hospital still. :(
Thanks for sharing this with us.
Julie
Good topic. I am amazed too at the range of sx that can be experienced and the range of the different outcomes for people who have supposedly the same strain.
I think the research suggests strong genetic family links and so I started thinking about my family and extended family, none of whom have MS. But I did think about my dear old Dad who never went to the doctor and had this in built desire to eat fresh fruit, vegies, nuts and fresh fish all his life.
He only got sick in his 80's when they discovered he was a celiac and I understand that there is a strong link between MS and celiac. So probably the research seems to confirm, in my family at least, that we are born with some predisposition to autoimmune disease but it requires environmental factors to pull the trigger.
In my case I didn't eat anywhere near the healthy diet that my Dad did so now for the past 6 weeks have been a Vegan plus seafood kind of guy.
Of course, Cobob I always learn something new with your posts. I never knew about the special stink ingredient. So now I'll have to learn to say instead can anyone smell T butyl mercaptan? and watch their faces.lol
Blessings
Alex
I think the research suggests strong genetic family links and so I started thinking about my family and extended family, none of whom have MS. But I did think about my dear old Dad who never went to the doctor and had this in built desire to eat fresh fruit, vegies, nuts and fresh fish all his life.
He only got sick in his 80's when they discovered he was a celiac and I understand that there is a strong link between MS and celiac. So probably the research seems to confirm, in my family at least, that we are born with some predisposition to autoimmune disease but it requires environmental factors to pull the trigger.
In my case I didn't eat anywhere near the healthy diet that my Dad did so now for the past 6 weeks have been a Vegan plus seafood kind of guy.
Of course, Cobob I always learn something new with your posts. I never knew about the special stink ingredient. So now I'll have to learn to say instead can anyone smell T butyl mercaptan? and watch their faces.lol
Blessings
Alex
Yes, to detect gas leaks. Another daily exposure, I smell it everytime we light the stove or oven.
We have a high pressure natural gas pumping station right up the road that uses t-butyl mercaptan. It is what they use to put the "stink" in natural gas (which is odorless.) If you use natural gas or propane, you are exposed to t-butyl mercaptan.
Bob
Bob
It will be interesting to see what the research uncovers in the future. I also believe it's more than one disease process/cause. There is something that runs on my dad's side of the family. Grandfather dx with MS, uncle dx with Lewy-body dementia, and father has numb toes, hand tremors, and lost the use of one arm for a couple of months. Nobody has any answers for him. And then there is me.
My son is on the autism spectrum, which in some circles is suspected to be autoimmune as well. Studies have found elevated levels of myelin basic protein in the CSF of autistic kids. Steroids did wonders for him and took him from fully autistic to aspergers after two rounds for his asthma. It was amazing, the transformation that occurred in his difficulties during both weeks, six months apart.
There has to be a genetic link in my family. You don't get a cluster in every generation like that, and my son never lived in the same geographic area as the rest of us. So you can't exactly blame the environment there (unless thimerosal/mercury had something to do with it, on which subject the jury has adjourned).
On the mercury topic, the men of my family were all farmers and exposed to seeds coated with mercury used for it's fungicidal properties. I've often wondered (because mercury is an immunotoxin and is know to cause mutations that result in autoimmune diseases). My son had the maximum dose of thimerosal and every round of vaccines triggered problems worse than the round before. The steroids cured him - almost. I know my exposure was pretty high as a kid as well - being the kid who would stand next to the planter as my dad dumped the bags of mercury coated seeds as the pink dust flew up into the air in our faces. You could taste it as you breathed it in.
I have more thoughts on this topic, especially when it comes to sulfa drugs. One of the worst, most long-lasting episodes I've had in the past came during the time I worked in agriculture and was daily exposed to high levels of Captan, a mercapten. This is their replacement for mercury in seed treatments. It's a chelator of mercury. It was during this time I developed head tremors, vision problems, and major fatigue and balance problems.
Then last summer when I was on a sulfa antibiotic for a suspected infection (that wasn't), I had been eating a lot of seafood and fish, then went in the sauna and all of the more serious issues came on. I wonder if that was the perfect storm for me - like if somehow the combination of a high mercury burden combined with a powerful sulfa drug that crosses the BBB may have mobilized a large amount of stored heavy metals and the intense heat from the sauna catalyzed reactions between those circulating complexes and my CNS.
I know it sounds crazy, and I've probably opened a real can of worms here, but it has me curious and I have no idea who to ask about it. There aren't very many toxicologists around and those are probably don't have access to the type of testing needed to figure it out.
But if you think about how many of us in the midwest (a huge coal producing and using region - especially for the older folks who had coal furnaces in their houses as kids) have been exposed to higher levels of mercury, and how prevalent the use of mercaptens is (even in medicine), there could conceivably be a connection.
My son is on the autism spectrum, which in some circles is suspected to be autoimmune as well. Studies have found elevated levels of myelin basic protein in the CSF of autistic kids. Steroids did wonders for him and took him from fully autistic to aspergers after two rounds for his asthma. It was amazing, the transformation that occurred in his difficulties during both weeks, six months apart.
There has to be a genetic link in my family. You don't get a cluster in every generation like that, and my son never lived in the same geographic area as the rest of us. So you can't exactly blame the environment there (unless thimerosal/mercury had something to do with it, on which subject the jury has adjourned).
On the mercury topic, the men of my family were all farmers and exposed to seeds coated with mercury used for it's fungicidal properties. I've often wondered (because mercury is an immunotoxin and is know to cause mutations that result in autoimmune diseases). My son had the maximum dose of thimerosal and every round of vaccines triggered problems worse than the round before. The steroids cured him - almost. I know my exposure was pretty high as a kid as well - being the kid who would stand next to the planter as my dad dumped the bags of mercury coated seeds as the pink dust flew up into the air in our faces. You could taste it as you breathed it in.
I have more thoughts on this topic, especially when it comes to sulfa drugs. One of the worst, most long-lasting episodes I've had in the past came during the time I worked in agriculture and was daily exposed to high levels of Captan, a mercapten. This is their replacement for mercury in seed treatments. It's a chelator of mercury. It was during this time I developed head tremors, vision problems, and major fatigue and balance problems.
Then last summer when I was on a sulfa antibiotic for a suspected infection (that wasn't), I had been eating a lot of seafood and fish, then went in the sauna and all of the more serious issues came on. I wonder if that was the perfect storm for me - like if somehow the combination of a high mercury burden combined with a powerful sulfa drug that crosses the BBB may have mobilized a large amount of stored heavy metals and the intense heat from the sauna catalyzed reactions between those circulating complexes and my CNS.
I know it sounds crazy, and I've probably opened a real can of worms here, but it has me curious and I have no idea who to ask about it. There aren't very many toxicologists around and those are probably don't have access to the type of testing needed to figure it out.
But if you think about how many of us in the midwest (a huge coal producing and using region - especially for the older folks who had coal furnaces in their houses as kids) have been exposed to higher levels of mercury, and how prevalent the use of mercaptens is (even in medicine), there could conceivably be a connection.
I think that's the consensus - that the disease we call MS is actually several different diseases. They certainly manifest in different ways, both in lesion activity and in how each patient responds to the CRABs. I'm disappointed that they were surprised by the revelation that atrophy could be seen in the eye - that's been out for a few years.
From a purely scientific perspective, it must be pretty intriguing. But for the specialist that are trying to treat us, it has to be so very frustrating. I personally feel like I am going downhill so fast- my husband and I just can't keep up.
I am glad you got to attend that panel though. It probably helps to know that they are really trying to figure this thing out. Sometimes, I feel that I have been abandoned- but I know that is not the case- sometimes my doctors' just don't know what to do with me.
Tammy
I am glad you got to attend that panel though. It probably helps to know that they are really trying to figure this thing out. Sometimes, I feel that I have been abandoned- but I know that is not the case- sometimes my doctors' just don't know what to do with me.
Tammy
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
