About two weeks ago, I was diagnosed with MS and Vasculitis, and I still haven't begun any treatment, because I waiting to do Cervical and Thoracic MRI. I haven't paid attention to my face getting red, but what about the ears getting red, because I noticed my ears get red sometimes!?
@MSpinalcord well if the CCSVI theory is true, i don't think it would effect just the ears, but our ears are a way to keep our body cool... hmm something to keep in mind
@MsGirlOnline I just did ultra sound at a local hospital to see if my jugular veins are narrowed. Even though I was recently diagnosed with MS, the report states that my jugular veins are normal. Could it be that I may be misdiagnosed with MS!?
Call CCSVI Clinic; (404)461-9560 to schedule your screening today in Fargo, ND or email us at apply@ccsviclinic.ca. Yes, get screened within the US. No waiting….find out more at ccsviclinic.ca
Call CCSVI Clinic; (404)461-9560 to schedule your screening today in Fargo, ND or email us at apply@ccsviclinic.ca. Yes, get screened within the US. No waiting….find out more at ccsviclinic.ca
Fellow tomatoe head here!!! Whenever I would work out, even low impact on the treadmill my face would get beet red. Never thought about it much until now! Interesting...
When I played hockey as a kid, my face went purple, my dad just said that I needed to get in better shape. I went on an fitness kick to get in better cariovascular shape, I built up to running 5 miles 4 times a week, I was in great shape, but my face still went purple, In 2003 I was diagnosed with MS.
SORRY FOR THE QUICK ENTER ON THAT COMMENT! :~) Let me try again! I HAVE ALWAYS GOTTEN TOMATOE HEAD! To the point I hated for anyone to see me after the gym or on really hot days because people would freak out and say, "oh my, are you alright?? Your face is soooo red??"!!! I'm telling you....I think they're on to something here!!!!!
just have to put a plan together including dopler, operation, etc. most of it is not offerred in winnipeg, manitoba. i realize i need a new gp. had all the almalgums replaced years ago when i first started my battle with ms
Hi Sweetie! remember me? I'm sooo sorry it has taken sooo Long to write you :( Allot has happened. To begin with I'll say I had surgary that tossed me into a long drawn out flare up! skype me soon and I'll catch you up! HUGSSS hope you are doing well now on Tysabri! Violet
I have RRMS, and I feel hopeful for the first time in years. I created a chat group called M.S. (Millions Strong to raise awareness of CCSVI.). It contains valuable resources to learn about new surgical procedures for people who suffer from M.S.
Thank you for this video. I think ur life makes sence as now doctors will argue that Veine porblem could be a consequence of MS. But what you are saying is just one more justification of Zamboni's theory.
Im thinking and praying at same time for this to be it. Im not sure about sweat etc. I do know when my face goes red at times but I thought that was a normal thing. Im suppose to be starting tysabri nxt week but am thinking that if these tests and surgery can fix every 1 of the ms patients then y are doctors putting us at risk ??????????? Im sure its gonna cost alot less for just doing the test and the surgery... Im realy confused well have been for the past 10yrs.. plz let me know wat u think
@haz740 Im the same way, Why would Dr.s want to give us something that could kill us, compared to something as simple as a tiny surgery????? ugh, i bet this is going to be a battle.
OMG! I TOTALLY agree with you (about the fact that the MS Society is not supporting CCSVI because they don't want a lot of drug companies to go out of business)! Before you posted this, I was thinking the exact same thing. I hate that they look at people as a source of profit and not as human beings. I believe that for the same reason tons more money is put into research for new treatments for MS and not a cure...
Multiple Sclerosis National Research Institute 1-866-676-7400
I left voice mail notifying them the the National MS Society is offering to fund further research and developments of CCSVI and that I wanted them to contact them at 1-800-344-4867 and apply for the funding and get on this NOW!!! Please do the same and pass this on to all you can think of!
Call the National Multiple Sclerosis Society @ 12-800-344-4867 and tell them to put you on the interested party list and TELL OUR DOCTORS TO START SENDING THEIR PATIENTS FOR AN MRV AND AT LEAST START CHECKING FOR CCSVI! Please pass this along! Thay are taking names and numbers and stories!
Girl, don't expect neurologist to test you for it.
Instead try going to a cardiovascular doc like I will. I am still dealing with my neurologist but those assholes will probably do anything in order to avoid admitting that MS is caucused by vascular impairment.
btw. Do you know what tests they gotta do to determine whether your veins are narrowed?
I don't know my nero is really open about new MS treatments but if not im going to get a referal from my GP to a cardiovascular doc.
First they do an ultrasound of your neck to look for any narrowing, the next step is to do a MRV (its like an MRI but instead of looking at the white matter and spine they look at ALL your veins, to see where the narrowing is) after that they do a angieplasty but on the narrowd vein.
When I exercise, my head gets really hot (I dont know if it's red, ill check next time) but only under my eyes actually sweats, my neck gets very damp, and so does my back, but not like how I see other people sweat - I'll be watching these exercise videos and everyone is sweating - like dripping, but not me. I just dampen hehe, that's kinda weird hmm? Because I dont really mind not sweating, I never looked into it.
Im very, very cautiously optimistic *fingers crossed*
It amazing news, i saw Mark (irishbear76) videos yesterday and i was sooooo happy.. i have always got a cranp like feeling in my neck and my head is always hot and my body is always cold.. i wish this is it.. i wish this is the news to finnally say bye bye to MS.. Im praying and good luck..
I have no idea lol they also say that if something else moved in your neck or body, it could be pressing on a vein.
But the test is so simple, just a MRV (just like an MRI with contrast, just looking at veins not the brain) to double check it, i wonder why more dr.s dont do it.
My name is Andy, I'm 35 and was dx 8/08. I don't get tomato head and used to sweat really bad when I worked out when I was in my mid 20's. Now when I work out I only sweat on my head. I can't run so I can't really sweat.
I don't seem to get tomato head but I don't sweat very much either. Something tells me we are born with this. As we get older it gets worse. What causes it? Maybe simply a lack of vitamin D through childhood. If this operation cures MS. This will cost the drug companies not millions, but Billions of dollars!!!
Well I do get tomato head but I am also a sweat pig. Any execrise causes me to sweat A LOT.
Don't know if that means anyting? I do know all my relapses have been in the spinal cord or the cervical cord. Anyone know if they are looking at anyting but the brain??
I have tomato head at least 10 times a day. People at work are constantly asking me if I am pissed LOL.
I also have a new vein that stands out on my forehead. It is a Y branch right at the hairline.
ANyway. There is no money in cures only treatments.
THE MS society is just being wary because of the nature of the current paradigm. You cannot say that something is autoimmune and started by a virus for over a decade and then switch to CVD overnight.
Yeah I guess you are right about the MS society, it would make them look bad, esp to their investors if they backed something that turned out to be unproven...yet! lol
I hope we can all get a hold of this Paper when it does come out I will put it on my blog and website :) and that goes for the rest of you if you have one!
omg That is like me I always tell my mom and sister that I don't have to wear deoderant. lol (I do if I go somewhere to smell good but not at home) I could live without buying it.
What if you never grew hair under your arms? but had tomatoe head? I am not trying to be sily but it is really my life ! no underarm hair am 51 yrs of age... I can not regulate my body temp! its always been and issue since I can remember? gott any ideas? love your posts! happy turkey! suz
It is so good to see you and to hear you talking about this! I hope that everybody will find out about Dr. Zamboni and his wonderful work! I agree with you when you say that it is important to be mini experts of our own disease. Unfortunately, my doctor had Hopkins already told me that he doesn't support it, so I wish I would be in Italy at this moment, so I can to go to Ferrara and get it done!...and I wouldn't pay a thing because we have free healthcare! :)
I am so going to get on the exercise bike and see if I have a tomato head!! lol I agree with you about the no drugs thing - too good to be true - time will tell. I just hope not too much time! Kerri xo
Bless your heart and best of luck! Thanks!
lormendi 10 months ago
About two weeks ago, I was diagnosed with MS and Vasculitis, and I still haven't begun any treatment, because I waiting to do Cervical and Thoracic MRI. I haven't paid attention to my face getting red, but what about the ears getting red, because I noticed my ears get red sometimes!?
MSpinalcord 1 year ago
@MSpinalcord well if the CCSVI theory is true, i don't think it would effect just the ears, but our ears are a way to keep our body cool... hmm something to keep in mind
MsGirlOnline 1 year ago
@MsGirlOnline I just did ultra sound at a local hospital to see if my jugular veins are narrowed. Even though I was recently diagnosed with MS, the report states that my jugular veins are normal. Could it be that I may be misdiagnosed with MS!?
MSpinalcord 1 year ago
Call CCSVI Clinic; (404)461-9560 to schedule your screening today in Fargo, ND or email us at apply@ccsviclinic.ca. Yes, get screened within the US. No waiting….find out more at ccsviclinic.ca
derekdadey1 1 year ago
Call CCSVI Clinic; (404)461-9560 to schedule your screening today in Fargo, ND or email us at apply@ccsviclinic.ca. Yes, get screened within the US. No waiting….find out more at ccsviclinic.ca
derekdadey1 1 year ago
Fellow tomatoe head here!!! Whenever I would work out, even low impact on the treadmill my face would get beet red. Never thought about it much until now! Interesting...
starmuse97 1 year ago
Have you been following my research into posture and CCSVI ms?
Google inclined bed therapy to find more info and watch the videos on my site.
We have a study rining on thisisms forum also for people with ms.
Andrew
InclinedTherapy 1 year ago
When I played hockey as a kid, my face went purple, my dad just said that I needed to get in better shape. I went on an fitness kick to get in better cariovascular shape, I built up to running 5 miles 4 times a week, I was in great shape, but my face still went purple, In 2003 I was diagnosed with MS.
Get ready for the revenge of the killer tomatoes!
deepan66 1 year ago
@deepan66 ahhhh! that has to be a big clue... yeah? yeesh I hope so.
MsGirlOnline 1 year ago
Hey there, I'm just hearing about this. I do not get tomatoe head, and I sweat everywhere. I do have MS though.
Bratnik2112 1 year ago
@Bratnik2112 yeah, a few other people have said that they dont get it too, hmmm maybe there is a peice of the puzzle we havent found yet...
MsGirlOnline 1 year ago
SORRY FOR THE QUICK ENTER ON THAT COMMENT! :~) Let me try again! I HAVE ALWAYS GOTTEN TOMATOE HEAD! To the point I hated for anyone to see me after the gym or on really hot days because people would freak out and say, "oh my, are you alright?? Your face is soooo red??"!!! I'm telling you....I think they're on to something here!!!!!
2muchlivin2do 2 years ago
@2muchlivin2do I know right? people always came up to me asking the samething!
I really hope this is the thing, MS has caused so much pain.
MsGirlOnline 1 year ago
I have ALWAYS
2muchlivin2do 2 years ago
just have to put a plan together including dopler, operation, etc. most of it is not offerred in winnipeg, manitoba. i realize i need a new gp. had all the almalgums replaced years ago when i first started my battle with ms
CraigSparham 2 years ago
wow, good for you!
MsGirlOnline 2 years ago
i raced motocross fur 9 years and now realized i never sweated.
CraigSparham 2 years ago
wow, crazy isnt it!
MsGirlOnline 2 years ago
I have tomato head, all my life!
dmjtjackson 2 years ago
Hm. I always get a tomato head if I work out. It's awkward sometimes. Maybe it's because of my neck vains..
Prissie28 2 years ago
Yes, Tomato head for sure!
chiromom1 2 years ago
Hi Sweetie! remember me? I'm sooo sorry it has taken sooo Long to write you :( Allot has happened. To begin with I'll say I had surgary that tossed me into a long drawn out flare up! skype me soon and I'll catch you up! HUGSSS hope you are doing well now on Tysabri! Violet
violetmatthers 2 years ago
I have RRMS, and I feel hopeful for the first time in years. I created a chat group called M.S. (Millions Strong to raise awareness of CCSVI.). It contains valuable resources to learn about new surgical procedures for people who suffer from M.S.
MillionsStrong4MS 2 years ago
sounds great, i'm going to check it out now!
MsGirlOnline 2 years ago
Thank you for this video. I think ur life makes sence as now doctors will argue that Veine porblem could be a consequence of MS. But what you are saying is just one more justification of Zamboni's theory.
azeribest 2 years ago
Im thinking and praying at same time for this to be it. Im not sure about sweat etc. I do know when my face goes red at times but I thought that was a normal thing. Im suppose to be starting tysabri nxt week but am thinking that if these tests and surgery can fix every 1 of the ms patients then y are doctors putting us at risk ??????????? Im sure its gonna cost alot less for just doing the test and the surgery... Im realy confused well have been for the past 10yrs.. plz let me know wat u think
haz740 2 years ago
@haz740 Im the same way, Why would Dr.s want to give us something that could kill us, compared to something as simple as a tiny surgery????? ugh, i bet this is going to be a battle.
MsGirlOnline 2 years ago
You make sense. My doughter with MS not swet at all.
draghci 2 years ago
OMG! I TOTALLY agree with you (about the fact that the MS Society is not supporting CCSVI because they don't want a lot of drug companies to go out of business)! Before you posted this, I was thinking the exact same thing. I hate that they look at people as a source of profit and not as human beings. I believe that for the same reason tons more money is put into research for new treatments for MS and not a cure...
WithCourage2008 2 years ago
Here is another!
Multiple Sclerosis National Research Institute 1-866-676-7400
I left voice mail notifying them the the National MS Society is offering to fund further research and developments of CCSVI and that I wanted them to contact them at 1-800-344-4867 and apply for the funding and get on this NOW!!! Please do the same and pass this on to all you can think of!
9gabbycats 2 years ago
Call the National Multiple Sclerosis Society @ 12-800-344-4867 and tell them to put you on the interested party list and TELL OUR DOCTORS TO START SENDING THEIR PATIENTS FOR AN MRV AND AT LEAST START CHECKING FOR CCSVI! Please pass this along! Thay are taking names and numbers and stories!
9gabbycats 2 years ago
WOOO! just got off the phone with them and added my name!
MsGirlOnline 2 years ago
Girl, don't expect neurologist to test you for it.
Instead try going to a cardiovascular doc like I will. I am still dealing with my neurologist but those assholes will probably do anything in order to avoid admitting that MS is caucused by vascular impairment.
btw. Do you know what tests they gotta do to determine whether your veins are narrowed?
MRI? ( or did you say mrv??)
what else?
Armando7654 2 years ago
I don't know my nero is really open about new MS treatments but if not im going to get a referal from my GP to a cardiovascular doc.
First they do an ultrasound of your neck to look for any narrowing, the next step is to do a MRV (its like an MRI but instead of looking at the white matter and spine they look at ALL your veins, to see where the narrowing is) after that they do a angieplasty but on the narrowd vein.
MsGirlOnline 2 years ago
Thanks.
what about sonograph or tompography - you think they do that also?
Armando7654 2 years ago
I'm not sure, I havent read that in my research yet, but I wouldn't exclude anything at this point.
MsGirlOnline 2 years ago
This has been flagged as spam show
You can do that surgery in Poland. They take new patients!
The city: Katowice
Street: Rolna 18
Tel. 354-057
Located close to Franz Josef Hotel
The clinic name: EuroMedic
One of the main doctors who conducts the procedure there is: Marian Smirka call for appointments 32-2120498.
They charge around $3,400 USD. for fixing you up
Armando7654 2 years ago
hey, sorry i could only use that video as a response only to one person.. its on irishbear76's responded videos... im sorry
Omario
omexmc80 2 years ago
Thats ok, ive done that before! lol
MsGirlOnline 2 years ago
BTW, youre looking great girl!
Reluctantwriter7 2 years ago
When I exercise, my head gets really hot (I dont know if it's red, ill check next time) but only under my eyes actually sweats, my neck gets very damp, and so does my back, but not like how I see other people sweat - I'll be watching these exercise videos and everyone is sweating - like dripping, but not me. I just dampen hehe, that's kinda weird hmm? Because I dont really mind not sweating, I never looked into it.
Im very, very cautiously optimistic *fingers crossed*
Reluctantwriter7 2 years ago
me too! its my face that gets it! lol
*fingers crossed too*
MsGirlOnline 2 years ago
Thank you for your video post MS Girl.
Like you I'm hopeful and skeptical at the same time. I won't let drug company profits stop me! Like you, I think CCSVI makes sense...sign me up now!!
fancycanuck 2 years ago
yay!!
MsGirlOnline 2 years ago
You can do that surgery in Poland. They take new patients!
The city: Katowice
Street: Rolna 18
Tel. 354-057
Located close to Franz Josef Hotel
The clinic name: EuroMedic
One of the main doctors who conducts the procedure there is: Marian Smirka call for appointments 32-2120498.
They charge around $3,400 USD. for fixing you up.
Armando7654 2 years ago
It amazing news, i saw Mark (irishbear76) videos yesterday and i was sooooo happy.. i have always got a cranp like feeling in my neck and my head is always hot and my body is always cold.. i wish this is it.. i wish this is the news to finnally say bye bye to MS.. Im praying and good luck..
Omario
omexmc80 2 years ago
Me too! This is what goes on in my head:
OMG, this could be it!
nah, its too good to be true..
but what if you have a kinked jugular...
then maybe this will help!
this could be it!
nah its too good to be true..
ect....
MsGirlOnline 2 years ago
What could have caused my vein to get kinked though?
eddysacat 2 years ago
I have no idea lol they also say that if something else moved in your neck or body, it could be pressing on a vein.
But the test is so simple, just a MRV (just like an MRI with contrast, just looking at veins not the brain) to double check it, i wonder why more dr.s dont do it.
MsGirlOnline 2 years ago
My name is Andy, I'm 35 and was dx 8/08. I don't get tomato head and used to sweat really bad when I worked out when I was in my mid 20's. Now when I work out I only sweat on my head. I can't run so I can't really sweat.
eddysacat 2 years ago
hmmm, I wonder if your vein only got kinked closer to 2008, hmm something to think about
MsGirlOnline 2 years ago
I don't seem to get tomato head but I don't sweat very much either. Something tells me we are born with this. As we get older it gets worse. What causes it? Maybe simply a lack of vitamin D through childhood. If this operation cures MS. This will cost the drug companies not millions, but Billions of dollars!!!
notapplicable66 2 years ago 2
yeah, so you know they are going to try and do everything to stop it, but we musnt let them!
MsGirlOnline 2 years ago
Hi Maria,
Well I do get tomato head but I am also a sweat pig. Any execrise causes me to sweat A LOT.
Don't know if that means anyting? I do know all my relapses have been in the spinal cord or the cervical cord. Anyone know if they are looking at anyting but the brain??
Great video as usually and to do your research.
As always be your own best advocate!
Andrea
MSVlogSupport 2 years ago
I have tomato head at least 10 times a day. People at work are constantly asking me if I am pissed LOL.
I also have a new vein that stands out on my forehead. It is a Y branch right at the hairline.
ANyway. There is no money in cures only treatments.
THE MS society is just being wary because of the nature of the current paradigm. You cannot say that something is autoimmune and started by a virus for over a decade and then switch to CVD overnight.
Zamboni is right.
Mark
irishbear76 2 years ago 2
Yeah I guess you are right about the MS society, it would make them look bad, esp to their investors if they backed something that turned out to be unproven...yet! lol
MsGirlOnline 2 years ago
I hope we can all get a hold of this Paper when it does come out I will put it on my blog and website :) and that goes for the rest of you if you have one!
gekiryudojo 2 years ago
yayyy we wil get Dr. Zamboni's word out there between all of us!
MsGirlOnline 2 years ago
thanks for the info msgirl here is to just
girl online!
gekiryudojo 2 years ago
wouldnt that be GREAT!! all of our MS channels will just turn into hey-how-you-doing channels!!!
MsGirlOnline 2 years ago
that would be cool!
gekiryudojo 2 years ago
omg That is like me I always tell my mom and sister that I don't have to wear deoderant. lol (I do if I go somewhere to smell good but not at home) I could live without buying it.
milindasuek 2 years ago
yeah! a shower just does me fine ! lol
MsGirlOnline 2 years ago
What if you never grew hair under your arms? but had tomatoe head? I am not trying to be sily but it is really my life ! no underarm hair am 51 yrs of age... I can not regulate my body temp! its always been and issue since I can remember? gott any ideas? love your posts! happy turkey! suz
ThePennygirl 2 years ago
O.O
I only have like 7 underarm hairs!! I thought it was just a family thing!! lol how funny is that!!
MsGirlOnline 2 years ago
It is so good to see you and to hear you talking about this! I hope that everybody will find out about Dr. Zamboni and his wonderful work! I agree with you when you say that it is important to be mini experts of our own disease. Unfortunately, my doctor had Hopkins already told me that he doesn't support it, so I wish I would be in Italy at this moment, so I can to go to Ferrara and get it done!...and I wouldn't pay a thing because we have free healthcare! :)
You did a good job!
Hugs,
Angela
angelusa73 2 years ago
Me too! I would love to go and have it done there! plus, its so pretty there it would be a treat!
MsGirlOnline 2 years ago
I am so going to get on the exercise bike and see if I have a tomato head!! lol I agree with you about the no drugs thing - too good to be true - time will tell. I just hope not too much time! Kerri xo
kezzcass 2 years ago 2
Gosh I hope not too much time will pass, I hope this helps everyone!
MsGirlOnline 2 years ago