One Demyelination Event Is Plenty For Me Thanks - Would Moving Near The Equator Help?Where Exactly??
May 31, 2011 5:42 AM Subscribe
30 something caucasian male living way up top in North America was diagnosed with transverse myelitis recently.
I'm full mobile again miraculously but experience crazy neuropathic symptoms... I was told that my chances of having MS down the road are about 30%.
Should I move as close to the equator as possible to reduce my risks? if yes, where exactly?
Please consider the following:
- access to medicine
- access to MRI's if shit hits the fan again
- english language only at the moment
- the need to work wherever I am in order to pay down student loans from my MBA (#$%!!!)
- all the other things I'm forgetting about asking
thanks for your ideas because I think I'm screwed.
Please consider the following:
- access to medicine
- access to MRI's if shit hits the fan again
- english language only at the moment
- the need to work wherever I am in order to pay down student loans from my MBA (#$%!!!)
- all the other things I'm forgetting about asking
thanks for your ideas because I think I'm screwed.
It's not clear if the OP is American (Alaska) or Canadian. This would determine his eligibility to live in either Hawaii or Florida.
But, if you want to be closer to the equator, I would look at Costa Rica, whose doctors speak English (for the most part) and whose medical infrastructure is world class.
posted by dfriedman at 5:52 AM on May 31, 2011 [1 favorite]
But, if you want to be closer to the equator, I would look at Costa Rica, whose doctors speak English (for the most part) and whose medical infrastructure is world class.
posted by dfriedman at 5:52 AM on May 31, 2011 [1 favorite]
I live in Canada, which is of course a cold country, but I am never cold. I live and work and shop in warm buildings, I travel in heated vehicles, and when I have to be outdoors, I wear warm clothing. I do know some people who have M/S, and living in a cold climate has not been a problem for them. Health care is very good in Canada, and it's worth putting up with the climate. Of course, someone else may have to shovel your snow for you. But that is not too difficult to arrange.
posted by grizzled at 6:00 AM on May 31, 2011
posted by grizzled at 6:00 AM on May 31, 2011
Is this in regards to the geographic distribution risks of MS? If so, I believe it's generally accepted that that is determined by your location up until the age of 15.
From Wikipedia:
"Environmental factors during childhood may play an important role in the development of MS later in life. Several studies of migrants show that if migration occurs before the age of 15, the migrant acquires the new region's susceptibility to MS. If migration takes place after age 15, the migrant retains the susceptibility of his home country.[1][22] However, the age–geographical risk for developing multiple sclerosis may span a larger timescale.[1] A relationship between season of birth and MS has also been found which lends support to an association with sunlight and vitamin D. For example fewer people with MS are born in November as compared to May.[64]"
Be aware that many people with MS find that their symptoms are aggravated by heat, so the tropics may not be the best place to live.
The best advice I can give you is not to panic. MS can be a very scary threat, but even if you do go on to develop MS it's not necessarily the end of the world. I've been living with MS for 11 years, feel free to Memail me if you want to ask anything.
posted by goshling at 6:05 AM on May 31, 2011 [7 favorites]
From Wikipedia:
"Environmental factors during childhood may play an important role in the development of MS later in life. Several studies of migrants show that if migration occurs before the age of 15, the migrant acquires the new region's susceptibility to MS. If migration takes place after age 15, the migrant retains the susceptibility of his home country.[1][22] However, the age–geographical risk for developing multiple sclerosis may span a larger timescale.[1] A relationship between season of birth and MS has also been found which lends support to an association with sunlight and vitamin D. For example fewer people with MS are born in November as compared to May.[64]"
Be aware that many people with MS find that their symptoms are aggravated by heat, so the tropics may not be the best place to live.
The best advice I can give you is not to panic. MS can be a very scary threat, but even if you do go on to develop MS it's not necessarily the end of the world. I've been living with MS for 11 years, feel free to Memail me if you want to ask anything.
posted by goshling at 6:05 AM on May 31, 2011 [7 favorites]
I don't know if this is what the OP is getting at, but my understanding is that MS is thought to be caused (partly) by lack of exposure to enough sunlight/UVB rays and the body's production of vitamin D (Seattle has a lot of MS patients, weather could be at fault). If so, I would guess a move to the southern US or southern CA may be of benefit. Somewhere where you can reap the benefits of the sun. Costa Rica is also a good suggestion, although this may not be feasible as I don't know what your line of work is.
i would think southern CA would be a good choice because the weather is perfect for outdoor activity.
posted by bolognius maximus at 7:31 AM on May 31, 2011
i would think southern CA would be a good choice because the weather is perfect for outdoor activity.
posted by bolognius maximus at 7:31 AM on May 31, 2011
Not a physician, not your physician, not any sort of physician at all.
Oh, OP, your neurologist or physician should be pointing you to articles. I suspect you are googling, and this is not the factor to focus on (nthing goshling). I'm afraid of you continuing down the rabbit hole.
I'm going to point you to some studies (the abstracts as a start) and I encourage you to talk to your neurologist about this. The last few years in particular have some really interesting findings that may be very beneficial for patients who start (and adhere) to early treatment.
Recent studies (2009, 2010) have suggested that the risk factors that are associated with progression (after suspected initial symptom) are things such as the number of relapses over the next 5 years (as in the more relapses, the greater likelihood of progression).
If your physician suspects that you exhibited neurological dysfunctions suggestive of MS, you may want to consider (after discussing with your neurologist, of course) treatment for MS. There have been numerous randomized control studies showing a significantly reduced number of patients who have a first symptoms suggestive eof multiple sclerosis (i.e. >2 lesions, etc.) progress to develop MS if they start early treatment vs placebo; there are many more studies like this with other types of MS meds, too, but not searching for all of them here.
For many patients who develop multiple sclerosis, there is thought to be a window between a relapsing-remitting phase (periodic episodes) to secondary progressive multiple sclerosis. Although the RR phase varies widely, once the SP phase starts, nothing seems to change the course. So early treatment is now done to prevent progression into the SP phase.
I’d be happy to point you to peer reviewed articles and randomized clinical trials. I think you should read the literature as a start and then discuss this with your neurologist. If you already saw a neurologist (in the US), I would not be surprised if this was already discussed as an option. If you saw a primary care physician who discussed options with you, I'd highly highly suggest thatyou talk to a neurologist instead; they can look at your MRI findings from that earlier episode and make a decision and recommendation and would also should be aware of these studies.
Pay for the specialist even if it is out of pocket before you start moving to the equator and not using the time to start treatment ....
posted by Wolfster at 8:07 AM on May 31, 2011 [1 favorite]
Oh, OP, your neurologist or physician should be pointing you to articles. I suspect you are googling, and this is not the factor to focus on (nthing goshling). I'm afraid of you continuing down the rabbit hole.
I'm going to point you to some studies (the abstracts as a start) and I encourage you to talk to your neurologist about this. The last few years in particular have some really interesting findings that may be very beneficial for patients who start (and adhere) to early treatment.
Recent studies (2009, 2010) have suggested that the risk factors that are associated with progression (after suspected initial symptom) are things such as the number of relapses over the next 5 years (as in the more relapses, the greater likelihood of progression).
If your physician suspects that you exhibited neurological dysfunctions suggestive of MS, you may want to consider (after discussing with your neurologist, of course) treatment for MS. There have been numerous randomized control studies showing a significantly reduced number of patients who have a first symptoms suggestive eof multiple sclerosis (i.e. >2 lesions, etc.) progress to develop MS if they start early treatment vs placebo; there are many more studies like this with other types of MS meds, too, but not searching for all of them here.
For many patients who develop multiple sclerosis, there is thought to be a window between a relapsing-remitting phase (periodic episodes) to secondary progressive multiple sclerosis. Although the RR phase varies widely, once the SP phase starts, nothing seems to change the course. So early treatment is now done to prevent progression into the SP phase.
I’d be happy to point you to peer reviewed articles and randomized clinical trials. I think you should read the literature as a start and then discuss this with your neurologist. If you already saw a neurologist (in the US), I would not be surprised if this was already discussed as an option. If you saw a primary care physician who discussed options with you, I'd highly highly suggest thatyou talk to a neurologist instead; they can look at your MRI findings from that earlier episode and make a decision and recommendation and would also should be aware of these studies.
Pay for the specialist even if it is out of pocket before you start moving to the equator and not using the time to start treatment ....
posted by Wolfster at 8:07 AM on May 31, 2011 [1 favorite]
My understanding has always been that heat is bad for MS.
posted by artistic verisimilitude at 8:31 AM on May 31, 2011
posted by artistic verisimilitude at 8:31 AM on May 31, 2011
Echoing the idea that the latitude difference is thought to matter only before a person reaches adulthood, and that heat can often exacerbate MS symptoms. In terms of geography and climate, you are likely better off staying where you are than moving to the equator.
Do talk to your neurologist about starting disease-modifying drugs, which have been shown to prevent/delay MS from starting in people who have had a single demyelinating event. Ask also about vitamin D supplements, especially given your northern location.
posted by vytae at 9:00 AM on May 31, 2011
Do talk to your neurologist about starting disease-modifying drugs, which have been shown to prevent/delay MS from starting in people who have had a single demyelinating event. Ask also about vitamin D supplements, especially given your northern location.
posted by vytae at 9:00 AM on May 31, 2011
My understanding is that if a person is born in an equatorial region, and stays there for their developmental years their risk of MS remains unchanged no matter where they go. The same may apply to people living in northern climes. What accounts for this? Probably exposure to a virus in early life.
Was your demyelinating event iatrogenic? Sometimes demyelination can occur as a result of overagressive correction of hyponatremia.
Consider some treatment options - rebiff, avonex, and betaseron. These interferons reduce the number of relapses in a five year period by about 1/3, but compliance rates are low. Side effects include flu-like symptoms, infusion related reactions, and local reactions.
Considerations in choosing an interferon:
Rebiff is a high dose interferon injected three times weekly (usually monday, wednesday, friday). Each dose needs refrigeration.
Betaseron is a high dose interferon injected every day. One advantage of betaseron is that it does not require refrigeration - each dose is reconstituted before injection.
Avonex is a lower dose interferon injected once weekly.
Another possible therapy is copaxone, which does not cause flu-like symptoms but can cause infusion related reactions (paradoxically, this reaction can happen with some doses and not with others).
Tysabri works better than other therapies, but has a feared side effect of PML (so it is available through a special registry). Tysabri reduces relapse rates by about 2/3.
Newer therapies such as fingolimod (Gilena) are now approved.
Daily exercise can also be of some benefit.
posted by candasartan at 6:21 AM on June 1, 2011
Was your demyelinating event iatrogenic? Sometimes demyelination can occur as a result of overagressive correction of hyponatremia.
Consider some treatment options - rebiff, avonex, and betaseron. These interferons reduce the number of relapses in a five year period by about 1/3, but compliance rates are low. Side effects include flu-like symptoms, infusion related reactions, and local reactions.
Considerations in choosing an interferon:
Rebiff is a high dose interferon injected three times weekly (usually monday, wednesday, friday). Each dose needs refrigeration.
Betaseron is a high dose interferon injected every day. One advantage of betaseron is that it does not require refrigeration - each dose is reconstituted before injection.
Avonex is a lower dose interferon injected once weekly.
Another possible therapy is copaxone, which does not cause flu-like symptoms but can cause infusion related reactions (paradoxically, this reaction can happen with some doses and not with others).
Tysabri works better than other therapies, but has a feared side effect of PML (so it is available through a special registry). Tysabri reduces relapse rates by about 2/3.
Newer therapies such as fingolimod (Gilena) are now approved.
Daily exercise can also be of some benefit.
posted by candasartan at 6:21 AM on June 1, 2011
This thread is closed to new comments.
posted by onhazier at 5:46 AM on May 31, 2011