Bearygood
04-26-2007, 09:31 PM
For those on here who have gotten an MS diagnosis, have you ever had Mono or another Epstein-Barr type virus? I've seen a lot about a potential link between MS and EBV so I'm curious...
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MSNik
04-27-2007, 09:44 AM
Hey Bearygood, there has been alot of talk for a very long time that MS may stem from a virus. Mono, Epstein Barr, etc are all auto-immune viruses with such similar fatigue issues as MS that they have been confused in dx over the years. My Neuro says there is no way one can cause the other...however, especially in the 80s many people were getting MS, and it wasnt being picked up on- so they were told they had Epstein Barr or CFS (Chronic Fatigue Symdrome) and nevr truly dx. Years later, they are back complaining that "Something has to be done" and docs are re-diagonising the disease as MS; therefore it really didnt stem from having an old virus as much as it was never dx properly to begin with.
I never had either...although in high school, when they THOUGHT I had mono from being soo tired, mono was ruled out by a blood test, no one ever gave me a definitive answer on what was wrong with me, and lots of supplements were started to give my body energy and pep. Turns out now they are finding out many of those same supplments actually HURT the immune system, causing things like MS to show up later in life....but still, no proof that one has to do with the other.
I know you are big on natural stuff. Just be careful. I was drinking a ton of Green Tea when I was diagnosed. My doctors swear that the green tea I was drinking stimulated my immune system into attack, thus my first attack and my dx....I also was taking some other supplements and was told to stop immediately. Just make sure you ask a health care provider before you take anything...other than Omega 3, for inflamation, my doc wants me on NOTHING. ANd, you know what, since thats all Ive been taking for the past few months, I feel better!
Nikki
I never had either...although in high school, when they THOUGHT I had mono from being soo tired, mono was ruled out by a blood test, no one ever gave me a definitive answer on what was wrong with me, and lots of supplements were started to give my body energy and pep. Turns out now they are finding out many of those same supplments actually HURT the immune system, causing things like MS to show up later in life....but still, no proof that one has to do with the other.
I know you are big on natural stuff. Just be careful. I was drinking a ton of Green Tea when I was diagnosed. My doctors swear that the green tea I was drinking stimulated my immune system into attack, thus my first attack and my dx....I also was taking some other supplements and was told to stop immediately. Just make sure you ask a health care provider before you take anything...other than Omega 3, for inflamation, my doc wants me on NOTHING. ANd, you know what, since thats all Ive been taking for the past few months, I feel better!
Nikki
lilc
04-27-2007, 10:10 AM
Hi, Bearygood. I did have mono when I was 15. There was a thread last year where folks discussed this theory. Most of the people who replied had had mono - but that wasn't a scientific sample! It is interesting, though!
Bearygood
04-27-2007, 12:25 PM
Yup, I find all this stuff very interesting. I had mono when I was about 22 and my lymph gland on the side of my neck never completely went down. Hardly noticable now but for many years after if I was sick it would swell up a little. The neurologist thinks my symptoms might have even started as a teenager -- this is all really hard to tell since I was just diagnosed. It's amazing to think of all these things I've had -- except for maybe 3 things, all my friends have had things that for me can now be attributed to MS. (Except they've never had ON and might not have brain lesions!) Anyway, Nik, you might be right -- it's kind of like which came first, the chicken or the egg? :dizzy: Anyway, don't know if any of you ever get a gut feeling -- this is certainly not based on ANYTHING scientific but I feel they're related; that somehow a similar virus has something to do with it. I am also hypothyroid -- diagnosed when I was in my early 30s and although it's hereditary (Hashimoto's) it IS autoimmune.
Re: supplements, if you believe (as I do) that things can help, it comes with the territory that you have to believe things can hurt. I mentioned this in the "natural" thread but my neuro warned me about taking things that stimulate the autoimmune system since that's the problem, ours are so good it attacks things it shouldn't! No echinacea, golden seal or astragalus for sure -- still researching other things that puport to enhance (as opposed to balance.) Woke up in the middle of the night (as has been the case for weeks now), turned on the radio and what was on? The news, reporting a new study that again confirms a link between the omega oils and brain/nerve function! There's also a lot of interesting information about the anti-inflamatory properties of tumeric out there. I've always been interested in this stuff and had a very good result with treating gallstones homeopathically. ( Still have my gallbladder and haven't had an attack for 9 years.) Having seen it work for me before, I have to at least try to approach it this way first. A big part of this is about personal choice -- but I AM big on knowing ALL possible options. Information is often the best weapon we have...
Re: supplements, if you believe (as I do) that things can help, it comes with the territory that you have to believe things can hurt. I mentioned this in the "natural" thread but my neuro warned me about taking things that stimulate the autoimmune system since that's the problem, ours are so good it attacks things it shouldn't! No echinacea, golden seal or astragalus for sure -- still researching other things that puport to enhance (as opposed to balance.) Woke up in the middle of the night (as has been the case for weeks now), turned on the radio and what was on? The news, reporting a new study that again confirms a link between the omega oils and brain/nerve function! There's also a lot of interesting information about the anti-inflamatory properties of tumeric out there. I've always been interested in this stuff and had a very good result with treating gallstones homeopathically. ( Still have my gallbladder and haven't had an attack for 9 years.) Having seen it work for me before, I have to at least try to approach it this way first. A big part of this is about personal choice -- but I AM big on knowing ALL possible options. Information is often the best weapon we have...
WALLEYE
04-27-2007, 12:47 PM
No but wife had scarlet fever, that supposedly damaged blood vessels. i heard that it also played into the immune system. any thoughts?
Bearygood
04-27-2007, 01:21 PM
Who knows? SOMEWHERE out there lies a common thread but who knows what it is? I've discovered some stuff though, just by reading here and other places. Interesting, isn't it?
WALLEYE
04-27-2007, 01:25 PM
very interesting,intriging but bizarre that the docters are baffled.
Lisa_P
04-27-2007, 03:20 PM
I went to an all girls school as a teenager and was exposed many times to both, but never developed either. However, it shows up in my current bloodwork!
diana53
04-27-2007, 04:41 PM
I'm brand NEW to the message board! This is my first! I had mono so bad that it went into hepatitis when I was 16. Nothing was ever quite the same since. It took until age 40 to get a diagnosis of MS. I've always said there was a connection. Also there was a cluster of 5 females with MS within a very small geographic location. Did you also have a cluster in your area?
Bearygood
04-27-2007, 05:00 PM
Welcome, diana53! I was "new" myself about 2 weeks ago! :wave: In my case I'm not aware of any clusters -- if this really started when I was a teenager I wouldn't have access to that info. now anyway. Like you (and probably others who have this or other things) I have a "gut" feeling about certain things -- not initially based on anything scientific but from reading here and other places I have certainly found support for a FEW things I've felt and this is one of them.
Even now, I feel that some of the things I'm experiencing in this apparent relapse may have been due to an injury I had about 3 1/2 years ago. I know this might sound weird but I do. (Just to clarify, 3 weeks ago I'd never have said MS or "relapse" -- I had no clue!)
I think these conversations are great though -- any clue to a common thread or threads can only help those who are trying to help us! :)
Even now, I feel that some of the things I'm experiencing in this apparent relapse may have been due to an injury I had about 3 1/2 years ago. I know this might sound weird but I do. (Just to clarify, 3 weeks ago I'd never have said MS or "relapse" -- I had no clue!)
I think these conversations are great though -- any clue to a common thread or threads can only help those who are trying to help us! :)
diana53
04-27-2007, 05:16 PM
I'm brand NEW to the message board! This is my first! I had mono so bad that it went into hepatitis when I was 16. Nothing was ever quite the same since. It took until age 40 to get a diagnosis of MS. I've always said there was a connection. Also there was a cluster of 5 females with MS within a very small geographic location. Did you also have a cluster in your area?
daznconfzd
04-28-2007, 09:56 AM
Hello All! Yep I had Mono when I was 14. The dr said it was one of the worse cases he had ever seen. I ended up in the hospital because of it. I started having my MS symptoms at age 16 but was diagnosed until I was 32.
WALLEYE
04-28-2007, 10:12 PM
i was wrong wife did have mono earlier in child hood
SRSuper
04-28-2007, 10:24 PM
im so glad someone started this thread- my joint pain symptoms turned neurological post-mono in 2003.
my mono was misdiagnosed as leukemia due to an insanely high white blood cell count and crazy swelling.
i gained about 30 lbs in swelling weight from spleen, liver and kidney swellings, and ended up with a hepatic hemangioma from the whole ordeal.
6 months post mono i had a 12 hour kidney infection as the virus passed through my system.
to this day, whenever i get the least bit sniffly, my glands swell up like boulders, my throat gets extremely sore, and my lower back gets tight and inflammed. its amazing how our bodies just dont let some things go.
my mono was misdiagnosed as leukemia due to an insanely high white blood cell count and crazy swelling.
i gained about 30 lbs in swelling weight from spleen, liver and kidney swellings, and ended up with a hepatic hemangioma from the whole ordeal.
6 months post mono i had a 12 hour kidney infection as the virus passed through my system.
to this day, whenever i get the least bit sniffly, my glands swell up like boulders, my throat gets extremely sore, and my lower back gets tight and inflammed. its amazing how our bodies just dont let some things go.
Bearygood
04-28-2007, 11:34 PM
WOW! That's quite a story, SRSuper!!!
I always thought there was something weird with me because for MANY years after my mono the right lymph gland on the side of my neck was still raised and when I got sick it would swell up. It's barely detectable now but I can still feel it slightly.
Maybe we should start a "weird MS theory" thread, LOL. I know we're not the first people to think of the connection but it seems like there's GOT to be something. It might not be limited specifically to EBV either -- I've read other musings that include measles! Anyway, it seems reasonable that there might be something to a "viral leftover" theory!
:blob_fire
I always thought there was something weird with me because for MANY years after my mono the right lymph gland on the side of my neck was still raised and when I got sick it would swell up. It's barely detectable now but I can still feel it slightly.
Maybe we should start a "weird MS theory" thread, LOL. I know we're not the first people to think of the connection but it seems like there's GOT to be something. It might not be limited specifically to EBV either -- I've read other musings that include measles! Anyway, it seems reasonable that there might be something to a "viral leftover" theory!
:blob_fire
Kim_blessed
04-29-2007, 09:24 AM
For those on here who have gotten an MS diagnosis, have you ever had Mono or another Epstein-Barr type virus? I've seen a lot about a potential link between MS and EBV so I'm curious...
I have not had Mono or EBV... but I did have Meningitius when I was 8...
I have not had Mono or EBV... but I did have Meningitius when I was 8...
PghGuy00
04-29-2007, 09:29 AM
Had bad mono when I was 19, tired/slept for a few months! DXd with a strange blood disorder in my late 20s, Hemotologist said it was autoimmune related. Fully DXd with MS at 49. I'm now concerned that my son, who had bad mono when he was 15, hospitalized, and being the offspring of a father with MS, will end up with MS also. Seems sort of likely that might happen.
peels1
04-29-2007, 12:01 PM
I have had a gut feeling about this myself. I had Chronic Mono for 4 yrs. since than things haven't been right, now here in my 30's I have a almost definate DX of MS. Strange isn't it?.......My EBV levels in my blood are still very high, Anyone else's
Bearygood
04-29-2007, 01:50 PM
Strange isn't it?.......
Maybe not so much! Just read a NEW article theorizing that environmental or viral influences early in life may trigger the disease in people who are genetically predisposed toward getting it.
Pghguy, I feel for you! This article also mentioned that one of the riddles is not knowing exactly what triggers it -- it seems reasonable that although you could be predisposed it doesn't mean it couldn't remain dormant. And, couldn't the same concept be applied to times between exacerbations for people with active MS? It certainly seems like one of the keys is to uncover what the triggers are. And, the triggers may well vary from one person to another... I think about my own life and what may have happened in the last few months or years to prompt this NOW if in fact I've had it in my system since I was a teenager.
With this in mind, another major point of interest to me in the article was the theory that MS may be a "syndrome" (rather than a single disease) and that the pathway may be different for each person who has been diagnosed.
Maybe not so much! Just read a NEW article theorizing that environmental or viral influences early in life may trigger the disease in people who are genetically predisposed toward getting it.
Pghguy, I feel for you! This article also mentioned that one of the riddles is not knowing exactly what triggers it -- it seems reasonable that although you could be predisposed it doesn't mean it couldn't remain dormant. And, couldn't the same concept be applied to times between exacerbations for people with active MS? It certainly seems like one of the keys is to uncover what the triggers are. And, the triggers may well vary from one person to another... I think about my own life and what may have happened in the last few months or years to prompt this NOW if in fact I've had it in my system since I was a teenager.
With this in mind, another major point of interest to me in the article was the theory that MS may be a "syndrome" (rather than a single disease) and that the pathway may be different for each person who has been diagnosed.
samismom94
04-29-2007, 04:13 PM
Hi all,
I also had mono when I was 17. I was down and out for about 6 weeks, and my right lymph node still swells up when I get sick. Also had an unknown blood disorder in 2000, after I had ON. It made me lose about 80 lbs, it all came off in less than a year. I never got a diagnosis on that, I had a bone marrow bipsy done because my Dr. thought it might be leukemia, my white blood cell count was 3x the norm. It is gone now though, the count went back down to normal and I stopped losing weight, got diagnosed with MS in January of this year. I don't know if the blood thing was in any way related to my MS, I've never heard of it happening to anyone else...
I also had mono when I was 17. I was down and out for about 6 weeks, and my right lymph node still swells up when I get sick. Also had an unknown blood disorder in 2000, after I had ON. It made me lose about 80 lbs, it all came off in less than a year. I never got a diagnosis on that, I had a bone marrow bipsy done because my Dr. thought it might be leukemia, my white blood cell count was 3x the norm. It is gone now though, the count went back down to normal and I stopped losing weight, got diagnosed with MS in January of this year. I don't know if the blood thing was in any way related to my MS, I've never heard of it happening to anyone else...
c57s53
04-29-2007, 05:16 PM
I keep telling you all how intertesting I find this board to be, and now this topic is a hoot to me. As you know, i do not have MS...I have Lupus. When i was 14 I was very sick for 2 months and couldn't seem to get better. The doctor had no clue what was wrong with me but I had no energy, i was anemic and just very weak. i missed so much time at school and my homework was sent home for me. Anyway, the doctor finally checked me for Mono. because I had a very high WBC but he said I didn't have Mono. Then, when i was 24 I had 2 very large golf ball size lymph nodes in my groin that lasted for about a week and then they went away. No explanation was ever found for them and they never returned. My Father's sister has MS and that is the only family link.....maybe all this points to autoimmune problems at an early age since most of us have had this when we were much younger? It is amazing what can go wrong in these complex bodies of ours!
Bearygood
04-30-2007, 10:46 PM
Got permission to post the link -- thought it might be okay because it's on WebMD, a healthboards.com partner. As I said below, I found several interesting things -- worth reading (don't let the title fool you) :)
http://www.webmd.com/multiple-sclerosis/news/20070426/ms-increasingly-womans-disease
http://www.webmd.com/multiple-sclerosis/news/20070426/ms-increasingly-womans-disease
Lisa_P
05-01-2007, 09:59 AM
Well. Isn't that just peachy... :P
MSNik
05-01-2007, 06:01 PM
Lisa, again I ask "are you ok?". I dont mean to be rude, and Im not about to report your posts, Im more concerned with why the comments to everyone's posts today? No matter what people write, youve got a comeback...isnt what peachy? I thought that this was an interesting article and worthy of mention (Thanks Bearygood). You usually post interesting comments, but today, your comments (the song you wrote to someone else) are really off topic...
I just wanted to ask you...are you ok? If you need us, we are here...
Nikki
I just wanted to ask you...are you ok? If you need us, we are here...
Nikki
Lisa_P
05-01-2007, 06:29 PM
I'm sorry -- it was just my sense of the ironic coming out. Inappriopriately, I guess. I didn't mean to offend anyone.
MSNik
05-01-2007, 07:31 PM
NO OFFENSE TAKEN. I hope you werent offended either...I was actually worried about you. Seemed I read a few of your responses in a row, and then started to wonder what they meant...as long as you are okay..
thats all I wanted to hear.
Have a good night, Lisa. And, know that we care about you.
Nikki
thats all I wanted to hear.
Have a good night, Lisa. And, know that we care about you.
Nikki
hereinwi
05-02-2007, 03:39 PM
I too had mono when I was 17. Actually that's how I spent my 17th birthday!
Bearygood
05-13-2007, 12:13 PM
I saw this just now -- here it is in print on WedMD!
http://www.webmd.com/multiple-sclerosis/news/20060410/epstein-barr-virus-may-trigger-ms
http://www.webmd.com/multiple-sclerosis/news/20060410/epstein-barr-virus-may-trigger-ms
lilc
05-13-2007, 01:39 PM
The very last sentence got me thinking: imagine a vaccine for EBV. If it is a key causative thing, we could imagine a world where MS is UNcommon.
Bearygood
05-13-2007, 02:18 PM
Some people have posted that the presence of EBV antibodies were found in their blood work. I don't know if that's true in all cases where you've had EBV long ago but if that is the case, I wonder if also finding a way to deal with that might also be something someone out there is thinking about and researching!
One other thing -- I do know that my recent blood work showed that the white blood cell count was elevated. No surprise since that's what happens with infection or inflammation and we knew that my optic nerve was inflamed. Just wondering -- when any of you have had exacerbations, have you had blood work done and found that your count is elevated? I doubt if that's done as a matter of course but it would be interesting if anyone has had blood work done at any of these times and knows their results.
One other thing -- I do know that my recent blood work showed that the white blood cell count was elevated. No surprise since that's what happens with infection or inflammation and we knew that my optic nerve was inflamed. Just wondering -- when any of you have had exacerbations, have you had blood work done and found that your count is elevated? I doubt if that's done as a matter of course but it would be interesting if anyone has had blood work done at any of these times and knows their results.
lilc
05-13-2007, 06:04 PM
My white count was elevated at the time I had my LP. (My neuro like to do LOTS of blood tests).
capp3736
05-27-2007, 11:46 PM
Hi,
I have R/R MS and was just tested for EBV and it is positive.
capp3736
I have R/R MS and was just tested for EBV and it is positive.
capp3736
beagleboy
05-28-2007, 07:00 AM
When I first went to the GP about my memory loss and confusion my white cell count was high with no explaination. She had me come back and have it repeated and then put me on antibiotics. When I went back after finishing them 10 days later it was normal again.
laurasari
05-28-2007, 09:35 AM
As far as I know I have never had mono or EBV.
I also do not know about my WBC being elevated when in a exacerbation. I don't think my Dr does that routinely for that. GP does it once a year for well check,
Interesting thread
Thanks
laurie f
I also do not know about my WBC being elevated when in a exacerbation. I don't think my Dr does that routinely for that. GP does it once a year for well check,
Interesting thread
Thanks
laurie f
ewizabeth
05-29-2007, 12:36 AM
For those on here who have gotten an MS diagnosis, have you ever had Mono or another Epstein-Barr type virus? I've seen a lot about a potential link between MS and EBV so I'm curious...
Hi Bearygood, :-)
I don't know if I had those or not. I was ill once when I was about five years old with a high fever and sick for a few days. Other than that I never had any of the usual childhood illnesses.
Hi Bearygood, :-)
I don't know if I had those or not. I was ill once when I was about five years old with a high fever and sick for a few days. Other than that I never had any of the usual childhood illnesses.