My new theory for the cause of MS sounds a lot like the planet earth being in exactly the right spot and the sun being the exact right size to make life possible.
When certain circumstances arise, all at the same exact same time, someone's gonna get struck by lightning. Circumstances could be a high levels of stress, mixed with a virus, chemicals, diet, or lack of sunlight, or maybe even a lover or spouse.
Who's to say what the direct cause is? We can only assume.
My question is... how many of you are obsessive worriers and thinkers like me?
Another theory that has been toying around in my head...... Perhaps one cause of MS has a direct link to your liver or kidneys not processing specific chain fatty acids.
I'm using metabolic treatments and am finding more success than ever.
I've had an odor emitting from the pores of my face since I was 15. It would come immediately after eating fatty foods (actually all foods, but junk makes it much worse).
I've read about this specific odor being related serious metabolic disease called, Isovaleric Acidemia. Thankfully I do not have this disease, but a specialist explained to me over the phone that what I am smelling is in fact Isovaleric Acid. This means I'm not processing certain fatty acids and proteins correctly.
Part of the treatment for the horrible Isovaleric Acidemia, which I don't have.... is L-Carnitine and Glycine.
I've been taking these with my meals and the odor has stopped. The odor also ceased when I took Milk Thistle (a supplemant used for
liver treatment). Only for a short period of time.
I have noticed that my recent experimentation of these amino acid supplements as well as the glucosamie that I've been on for at least a month and a half has changed a lot in my MS
I only wish it would cure me.
Cause of my MS?
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whyRwehere
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I'm surprised that people are very against the idea of the Hep B vaccine causing MS to show itself. It is accepted in France as fact after several nurses noticed the link...as health care givers, they were required to have the vaccine. My husband's neuro, who doesn't accept much, even accepts this link and the paediatrician agreed that our daughter should not have the vaccine.
Don't ask me for papers...ask a French doctor.
WRWH
Don't ask me for papers...ask a French doctor.
WRWH
wait. After the link was accepted in France they were required to have the vaccine? So they could possibly get MS? I don't understand the reasoning there...whyRwehere wrote:I'm surprised that people are very against the idea of the Hep B vaccine causing MS to show itself. It is accepted in France as fact after several nurses noticed the link...as health care givers, they were required to have the vaccine. My husband's neuro, who doesn't accept much, even accepts this link and the paediatrician agreed that our daughter should not have the vaccine.
Don't ask me for papers...ask a French doctor.
WRWH
It's not just the hep vaccination -
"At vaccineinformation, the tetanus vaccine information recommended checking out the pertussis vaccine information for people with serious illnesses (like MS), because there is a pertussis component in the tetanus shot. The pertussis vaccine information had this to say:
"A person with a recognized, possible, or potential neurologic condition should delay receiving DTaP or Tdap vaccine until the condition is evaluated, treated, and/or stabilized. Although DTaP vaccine does not cause neurological disorders, receiving the vaccine can cause an already-present underlying condition to show itself."
I had a tetanus shot in 1994 and it was afterwards that my health appeared to go downhill. But then I didn't know that I had an underlying condition, however I did know that I had a potentially serious wound and that I needed tetanus protection. So as far as I am concerned this is just history.
"At vaccineinformation, the tetanus vaccine information recommended checking out the pertussis vaccine information for people with serious illnesses (like MS), because there is a pertussis component in the tetanus shot. The pertussis vaccine information had this to say:
"A person with a recognized, possible, or potential neurologic condition should delay receiving DTaP or Tdap vaccine until the condition is evaluated, treated, and/or stabilized. Although DTaP vaccine does not cause neurological disorders, receiving the vaccine can cause an already-present underlying condition to show itself."
I had a tetanus shot in 1994 and it was afterwards that my health appeared to go downhill. But then I didn't know that I had an underlying condition, however I did know that I had a potentially serious wound and that I needed tetanus protection. So as far as I am concerned this is just history.
Progressive MS dx. 12/06. Currently on CAP for CPN: Wheldon protocol. LDN 4.5ml.
i think what's meant is, that some nurses in France, required to have the hep vaccine for work, afterwards noticed ms onset. similar to my vaccine-then-dx experience.
if we look at the study posted by dignan, it supports the idea of coincidence, over the anecdotal causative evidence of a few. however, the study itself appears kind of anecdotal, being an analysis of survey responses. although the cohort was large, as i understand it less than 1/2 a % of survey recipients responded. if i had the time or inclination, i'd take a much closer look at their entire methodology before i swallowed their findings whole.
JL
if we look at the study posted by dignan, it supports the idea of coincidence, over the anecdotal causative evidence of a few. however, the study itself appears kind of anecdotal, being an analysis of survey responses. although the cohort was large, as i understand it less than 1/2 a % of survey recipients responded. if i had the time or inclination, i'd take a much closer look at their entire methodology before i swallowed their findings whole.
JL
wait. After the link was accepted in France they were required to have the vaccine? So they could possibly get MS? I don't understand the reasoning there...
Hi guys
This is a fascinating thread - it seems we all have our own theories on what may or may not cause or may or may not aggravate an already existing neurological condition (ms). Very few things seem to be actually proven - again part of the problem when it comes to devising treatments or 'cures' for ms.
I do know that I have been advised (in Africa) not to have any vaccinations because I have ms.
I was an RN, and was vaccinated against almost anything - particularly after I started working here, and Hep was one of them.
I was also diagnosed shortly after finishing 6 months of chemo - my neuro at first thought (hoped?) I had ADEM because of the brain lesions, transverse myelitis (spinal lesions), L'Hermittes, and completely numb and useless rt arm (very possible to have an infective origin in someone who was immunocompromised and anaemic). Then my CSF came back took ages) - positive for OC bands and raised IGg.
Then I had another attack, and another...That was 9 years ago. And so the diagnosis!
Just prior to commencing my chemo (about a year before diagnosis of ms, but remember chemo suppresses immune response and is sometimes used to 'treat' ms), I had a Mantoux test (they inject a small amount of live BCG just under the skin) to test for TB. I reacted so badly - high fever (41C), lymphadenopathy, weakness - I ended up in hospital for a debridement (surgery to get rid of dead tissue) of my arm because of the cellulitis this test caused - I was sent to the medical school and told I was hyper-immune, and to not have it again!
So the point of all this is to say that I think we all have 'gut feels' about what may have 'triggered' our ms - these at least comfort us and give us some sense of understanding. However, as they are not established scientific fact, they cannot be used for identifying the cause of ms - not eveyone has the same story to tell.
Those stories are still valid though (I got Whooping Cough at the age of 5 immediately after the pertussis/diptheria vaccine, and the docs in the hospital all agreed it was the vaccine) to each of us personally, and although I made sure my kids got the standard childhood vaccines, I won't be having any more - just in case! We all repeat what the medical professionals tell us.
I have found all this anecdotal information very interesting, and although it may not further ms research (maybe they should do some more on vaccines though, and not just on Hep?), I feel that sharing personal experiences is very helpful.
Thanks guys!
This is a fascinating thread - it seems we all have our own theories on what may or may not cause or may or may not aggravate an already existing neurological condition (ms). Very few things seem to be actually proven - again part of the problem when it comes to devising treatments or 'cures' for ms.
I do know that I have been advised (in Africa) not to have any vaccinations because I have ms.
I was an RN, and was vaccinated against almost anything - particularly after I started working here, and Hep was one of them.
I was also diagnosed shortly after finishing 6 months of chemo - my neuro at first thought (hoped?) I had ADEM because of the brain lesions, transverse myelitis (spinal lesions), L'Hermittes, and completely numb and useless rt arm (very possible to have an infective origin in someone who was immunocompromised and anaemic). Then my CSF came back took ages) - positive for OC bands and raised IGg.
Then I had another attack, and another...That was 9 years ago. And so the diagnosis!
Just prior to commencing my chemo (about a year before diagnosis of ms, but remember chemo suppresses immune response and is sometimes used to 'treat' ms), I had a Mantoux test (they inject a small amount of live BCG just under the skin) to test for TB. I reacted so badly - high fever (41C), lymphadenopathy, weakness - I ended up in hospital for a debridement (surgery to get rid of dead tissue) of my arm because of the cellulitis this test caused - I was sent to the medical school and told I was hyper-immune, and to not have it again!
So the point of all this is to say that I think we all have 'gut feels' about what may have 'triggered' our ms - these at least comfort us and give us some sense of understanding. However, as they are not established scientific fact, they cannot be used for identifying the cause of ms - not eveyone has the same story to tell.
Those stories are still valid though (I got Whooping Cough at the age of 5 immediately after the pertussis/diptheria vaccine, and the docs in the hospital all agreed it was the vaccine) to each of us personally, and although I made sure my kids got the standard childhood vaccines, I won't be having any more - just in case! We all repeat what the medical professionals tell us.
I have found all this anecdotal information very interesting, and although it may not further ms research (maybe they should do some more on vaccines though, and not just on Hep?), I feel that sharing personal experiences is very helpful.
Thanks guys!
Last edited by AllyB on Mon Jan 21, 2008 12:18 pm, edited 1 time in total.
Al
First--AC thank you SO MUCH for this valuable info! I will immediately start researching! (Although my daughter is still doing excellent on her supplement treatment.)
Bob--the lady I referenced was a nurse. She got the insert from the package that is usually reserved for the doctor only. Potential for MS as a side effect was on the insert.
Don't remember who posted the question, but no doctor has ever attributed my daughter's MS to the Hepatitis B vaccine. It simply started within hours of receiving the vaccine.
Based on my research, I definitely do not believe all MSers have the exact same disease. Again, proven in at least 2 different cases where a disease would be diagnosed as MS but a cause/test/treatment were found for these 2 diseases. (And no, cannot remember what they were!) One causes sudden paralysis from the waist down and one caused ON as a symptom.
Bob--the lady I referenced was a nurse. She got the insert from the package that is usually reserved for the doctor only. Potential for MS as a side effect was on the insert.
Don't remember who posted the question, but no doctor has ever attributed my daughter's MS to the Hepatitis B vaccine. It simply started within hours of receiving the vaccine.
Based on my research, I definitely do not believe all MSers have the exact same disease. Again, proven in at least 2 different cases where a disease would be diagnosed as MS but a cause/test/treatment were found for these 2 diseases. (And no, cannot remember what they were!) One causes sudden paralysis from the waist down and one caused ON as a symptom.
A few more points..the lady (nurse) I was talking about was given a diagnosis of "serum sickness" by some docs and MS by others. I guess what frustrates me the most is that research is pretty much locked into autoimmune, period. I think that is too limiting when the definitive cause of MS has never been found. Also, if all of you do not have the same disease, it would be very difficult to get difinitive results on any kind of testing.
Don't know if you folks saw on the news last week (TV/online)...I found this at MSNBC (and it was probably posted here and I missed it!).
Headline: Arthritis Drug Shows Promise in Reversing Symptoms of Alzheimer's
A patient with Alzheimer's disease had their condition improve hugely just minutes after receiving a special injection of a prescription drug (Enbrel) approved to treat psoriasis and rheumatoid arthritis...this report details rapid cognitive improvement, beginning within minutes, using this same...treatment modality, in a patient with late-onset Alzheimer's disease.
Within minutes??? Wow!
Don't know if you folks saw on the news last week (TV/online)...I found this at MSNBC (and it was probably posted here and I missed it!).
Headline: Arthritis Drug Shows Promise in Reversing Symptoms of Alzheimer's
A patient with Alzheimer's disease had their condition improve hugely just minutes after receiving a special injection of a prescription drug (Enbrel) approved to treat psoriasis and rheumatoid arthritis...this report details rapid cognitive improvement, beginning within minutes, using this same...treatment modality, in a patient with late-onset Alzheimer's disease.
Within minutes??? Wow!
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cheerleader
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Hi Chris and All-
a very interesting thread, indeed!
As Ally has so clearly stated, her neurologist at first thought she might have ADEM after her reaction to chemo and vaccines. It was only after she had repeated attacks, that the diagnosis became MS. The diagnostic differential comes with time.
Your daughter could very well have ADEM. The protocol is treatment with steroids to relieve inflammation, and then a wait and see approach. The body usually is able to mend. Future MRIs show no new lesions, and there are no further attacks. This is where ADEM differs from MS, and only time can tell.
The supplements are probably helping your daughter to heal and reducing the presenting inflammation.
I wish my hubby had ADEM...but there was no one event that precipitated his attack. Sadly, his MS has been around for awhile.
so much to learn!
best,
AC
a very interesting thread, indeed!
As Ally has so clearly stated, her neurologist at first thought she might have ADEM after her reaction to chemo and vaccines. It was only after she had repeated attacks, that the diagnosis became MS. The diagnostic differential comes with time.
Your daughter could very well have ADEM. The protocol is treatment with steroids to relieve inflammation, and then a wait and see approach. The body usually is able to mend. Future MRIs show no new lesions, and there are no further attacks. This is where ADEM differs from MS, and only time can tell.
The supplements are probably helping your daughter to heal and reducing the presenting inflammation.
I wish my hubby had ADEM...but there was no one event that precipitated his attack. Sadly, his MS has been around for awhile.
so much to learn!
best,
AC
Hi Ac
I must admit, I was ok with the diagnosis of ADEM - I had it for about 6 weeks! I miss it...Though this was in 1999, so I have had some time to get used to ms, I guess!
My ms has only really become a serious issue for me in the last 18 months or so, with much more progression with each relapse. So now I am supplementing (thanks to the good folks here!) and taking Avonex, plus a s#@t load of other meds for symptomatic treatment! Tried Provigil - wish I had your hubbies reaction to it...
I really feel that my ms has some sort of 'infective' origin, whether from a vaccine or something else...The way my Neuro described ADEM was that a virus or bacteria would somehow manage to cross the bb barrier and get in amonst my nerve fibres, so my immune system would be forced to attack my own nerves in the CNS in order to try to destroy this virus/bacteria....Maybe sometimes ms is set off by an ADEM like episode - it 'sensitizes' the immune system to attacke nerve fibres...?? No clue really - just with my medical history, I know I have had immune 'problems' for a LONG time (even cancer is an 'immune' problem).
It makes sense to me that if Chris's daughter had ADEM, then the supplements could really work, in conjuction with natural repair, without any further inflammatory attacks to counter their beneficial and healing effect? I read up on ADEM, and although the symptoms could hang around for a long time (years to repair, with maybe some permanent deficit in some cases), there would be no NEW episodes i.e. no dissemination in time. But even with ms, we have some folks who have a much less progressive road.
Chris - you are right that the researchers are stuck on autoimmune, and I think that on the surface, that is what ms appears to be - but what we are all rolling around in this thread, is "did something cause that autoimmune response, and if so, what was it?" Thanks to you, there is another bone to chew (vaccines or infectious agents), which I find gels really well with my own feelings. I do realise that this is not a new idea and that some (very sketchy) research has been done on it - but I like it!
Thanks very much.
p.s. AC - how much magnesium does your hubby take at night?
I must admit, I was ok with the diagnosis of ADEM - I had it for about 6 weeks! I miss it...Though this was in 1999, so I have had some time to get used to ms, I guess!
My ms has only really become a serious issue for me in the last 18 months or so, with much more progression with each relapse. So now I am supplementing (thanks to the good folks here!) and taking Avonex, plus a s#@t load of other meds for symptomatic treatment! Tried Provigil - wish I had your hubbies reaction to it...
I really feel that my ms has some sort of 'infective' origin, whether from a vaccine or something else...The way my Neuro described ADEM was that a virus or bacteria would somehow manage to cross the bb barrier and get in amonst my nerve fibres, so my immune system would be forced to attack my own nerves in the CNS in order to try to destroy this virus/bacteria....Maybe sometimes ms is set off by an ADEM like episode - it 'sensitizes' the immune system to attacke nerve fibres...?? No clue really - just with my medical history, I know I have had immune 'problems' for a LONG time (even cancer is an 'immune' problem).
It makes sense to me that if Chris's daughter had ADEM, then the supplements could really work, in conjuction with natural repair, without any further inflammatory attacks to counter their beneficial and healing effect? I read up on ADEM, and although the symptoms could hang around for a long time (years to repair, with maybe some permanent deficit in some cases), there would be no NEW episodes i.e. no dissemination in time. But even with ms, we have some folks who have a much less progressive road.
Chris - you are right that the researchers are stuck on autoimmune, and I think that on the surface, that is what ms appears to be - but what we are all rolling around in this thread, is "did something cause that autoimmune response, and if so, what was it?" Thanks to you, there is another bone to chew (vaccines or infectious agents), which I find gels really well with my own feelings. I do realise that this is not a new idea and that some (very sketchy) research has been done on it - but I like it!
Thanks very much.
p.s. AC - how much magnesium does your hubby take at night?
Al
Hi Bobbut I consider the method of injecting into the spine through the back of the neck the biggest news in MS
They have had intrathecal methods of treatment (methotrexate for leukaemia, baclofen for spasticity etc) for a very long time - even indwelling catheters (for months) for pain management - delivering medication directly to the source of the pain, the spinal cord, mostly in the lumbar region, but not always for problems issuing from the lumbar region - this is just the easiest and safest area of entry. So I am surprised that this is hot news now - I would have thought that they had been using it or considering using it for ages.
The back of the neck has usually been reserved for the delivery of steroids for nerve root compression etc, but now with CT scans for guidance of the needles, placement is much more accurate - however, given the anatomy of the spinal cord and brain, I understood that anything injected into the lumbar region would eventually get to the brain, if the patient is placed correctly (trendellanberg - feet up, head down at a gradient of about 45degrees), as the CSF circulates and is replenished etc.
If a woman has an epidural during labour, she is placed in a semi-sitting up position (almost a reverse trendallenberg), so that the anaesthetic will not rise above the level of the diaphragm and impede breathing (I know of a couple who have ended up on a ventilator until it wore off!) - they usually enter at the level of L5/L6 for an epidural, but inject into the epidural space (before CSF is reached), but intrathecal chemo, painkillers, baclofen etc can be injected as if they were doing a spinal tap or anaesthetic (anaesthetic done sitting up and bent forward).
I am not trying to rain on this parade or anything, just trying to understand exactly why you are so interested in this as the technique as far as I am aware is not new (knowing that you are a bit of a cynic!) - so that maybe I can get happy too! I have probably missed something somewhere else (I have been a little unwell, so not up on the site like I was) , so please explain why this has you so excited??
Many many thanks
Last edited by AllyB on Mon Jan 21, 2008 1:11 pm, edited 1 time in total.
Al
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cheerleader
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Hey Ally-
I'm so sorry the last 18 months have become harder for you. I hope you're able to deal with the progression and find ways to feel OK each day.
I've spent the last year looking for ANY other diagnosis for my hubby...(Lyme? Virus? ADEM?) Something other than MS (please!) But we're coming to grips with his diagnosis, and are trying to get on with our lives. His one year anniversary of flare and diagnosis comes in March.
I've posted his supplement regimen here:
http://www.thisisms.com/ftopict-4975.html
He takes 600 mg. magnesium citrate (Natural Calm) at night before bed. His spasms are less "jumpy" and not as painful at night. He's able to sleep soundly (me too!) and is feeling more refreshed. We've been really lucky with the Provigil. The fatigue was so debilitating.
Today, in the states, we honor the legacy of Rev. Martin Luther King...a man who held on to his dreams for equality and justice in spite of great adversity. A beacon for all of us.
Keep looking for answers and stay strong!
best,
AC
I'm so sorry the last 18 months have become harder for you. I hope you're able to deal with the progression and find ways to feel OK each day.
I've spent the last year looking for ANY other diagnosis for my hubby...(Lyme? Virus? ADEM?) Something other than MS (please!) But we're coming to grips with his diagnosis, and are trying to get on with our lives. His one year anniversary of flare and diagnosis comes in March.
I've posted his supplement regimen here:
http://www.thisisms.com/ftopict-4975.html
He takes 600 mg. magnesium citrate (Natural Calm) at night before bed. His spasms are less "jumpy" and not as painful at night. He's able to sleep soundly (me too!) and is feeling more refreshed. We've been really lucky with the Provigil. The fatigue was so debilitating.
Today, in the states, we honor the legacy of Rev. Martin Luther King...a man who held on to his dreams for equality and justice in spite of great adversity. A beacon for all of us.
Keep looking for answers and stay strong!
best,
AC