Hi * !

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Hi * !

Postby LeoDaV » Fri Oct 13, 2006 11:11 am

After browsing for almost a year now, I thought it was time to join.

I'm a male 36 from The Netherlands...

First I want to thank all involved in ThisIsMS. This site stands out with head and shoulders above the rest. It's really informative and a decent MS-library.

I've been diagnosed with RRMS after a Nuritis Optica. That's now 4 years ago. I had some symptoms before but never realized it was MS. I'm pretty much convinced I have MS since the age of 12. I was always terribly tired and I sometimes, as a child, had some kind of mini-tremors in my left leg. The initial RMI scan showed 4 laesies and a clean spine. Now I have at least 6-7 visible leasies and 2 (one as big as your thumb) in my spine.

After the diagnosis I had roughly one major attack per year. Even now I still have some residue left from the last attack wich was 3 months ago.

My main symptoms where (are): Both hands numb and unable to use them; same numbness (you all know what I mean) on my arms, chest, both legs and belly. Sometimes I wonder is there a spot left that _is_ 'normal'... Behind my ears and my chin I have the pain/itch combination... really awefull.. I've also had vision problems like the whole world continiously spinning in circles... Due to the big leasie in my spine I have a 'belt' arround my body on the same hight as where the big laesie is. My EDSS varies between 2.0 and 6.5 depending on being in a relapse or remitting period.

My main treatments so far have been a 5 day solumedrol IV after each attack. I'm planning to enroll in the FTY720 Phase III study. I use 1000ug B12 vitamin supplement per day. I also use extra calcium after a solumedrol treatment.

I've always seen my MS as a study object for instance I now really know how the hands work. Drawings arn't the same as expieriencing it (the hard way). I've read enormous amounts of MS-related papers and I'm trying to distill a theory of what MS is... so far I have only more questions then answers :) I really would like to do a survey about environmental influences among fellow MS sufferers. Questions like "Did you ever had an electrical shock" etc... Maybe someone already did this but I could not find it on the web...

That's all for now.
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Postby sh8un » Fri Oct 13, 2006 12:21 pm

Hi and Welcome...
Thanx for telling us about your self. I also wanted to let you know that I was shocked by my stove just before my MS symptoms. Wow...if you can prove that getting shocked causes MS I will be rich. I always wanted to sue my landlord. Him and his wife were very odd and he was a researcher. UMMMM...a researcher...shock...MS...it's all making sense Damn you Biogen spi researchers! wish it were true. :lol:
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Postby Arron » Fri Oct 13, 2006 1:06 pm

Hi LeoDaV, thanks for the kind words and we're so glad you decided to join and begin participating. welcome!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby jimmylegs » Fri Oct 13, 2006 6:44 pm

welcome LD, wow the shock theory is one i have not heard before!! glad u enjoy the site, now you can get in on the action and be one more participant making it the great resource it is :D
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Re: shocker

Postby LeoDaV » Sat Oct 14, 2006 3:05 am

jimmylegs wrote:welcome LD, wow the shock theory is one i have not heard before!! glad u enjoy the site, now you can get in on the action and be one more participant making it the great resource it is :D

I'd like to investigate environmental factors. If you look at MS globaly there are parts of the world where there is (almost) no MS. Most argue it's because of gene differences. What if there is also a difference in pollution, the stuff we eat, drink, the clothes we wear, the shampoo we use, the amount of sun we are exposed to, anything that might be plausible... Those differences might lead to clues. Some differences are obvious...but it would not be the first time an obvious clue has been overlooked.

The question about getting a shock or not would be part of that investigation. It's not neccecairely a theory. Because there are people who had shocks too but did not develop MS... but if there is a trend let's say 90% who have MS also had an electrical shock prior to the first symptoms... then it would be really really intresting... I know I had a huge one before my first symptoms...
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Postby REDHAIRANDTEMPER » Sat Oct 14, 2006 6:47 am

ya know good question on the eviromental stuff...my regular dr has shown interested in trying to see if that is something thats has caused my problems...i lived in alaska for three yrs on kodiak island so with weather being something they factor in with ms..or at least i have read that..also i lived in spokane washington...when mt st helens blew...and of course we had that ash around the town for yrs being kicked up all the time...they have found the number of people in that town with diseases like ms and some other kinds have grown in the last ten yrs in people who were there when the mountain blew.....wish i was there for the studies they have done in the past...i find it interesting...still checking to see when they are having new studies in that area.....

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Re: Hi * !

Postby JFH » Sat Oct 14, 2006 8:38 am

Hi LD nice to have you active. Yes its a great site and a great community feeding it.

LeoDaV wrote:Maybe someone already did this but I could not find it on the web...

The EPIC study is studing environmental factors (not specifically for MS unfortunately) it might turn out something.

EPIC was designed to investigate the relationships between diet, nutritional status, lifestyle and environmental factors and the incidence of cancer and other chronic diseases. EPIC is the largest study of diet and health ever undertaken, having recruited over half a million (520,000) people in ten European countries: Denmark, France, Germany, Greece, Italy, The Netherlands, Norway, Spain, Sweden and the United Kingdom.

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uh oh here i go...

Postby jimmylegs » Sat Oct 14, 2006 3:57 pm

genetics aside, sunlight is one of the environmental factors used to try to explain the global distribution of ms and actually other illnesses like diabetes too. there are anomalous pockets of ms-free populations at northern latitudes, where you find the population eats lots of fish or something like that. the link is the vitamin D (sorry brom i had to say it lol) although in some cases there could be genetic protection also. there is much research to be found on multiple sclerosis and vitamin D. pubmed has a great collection or you can just use scholar.google.com to find interesting goodies. i am actually writing an essay - due TOMORROW eek what am i doing here! - on vitamin d as it pertains to health issues in populations with darker skin pigmentation. i have 85 pages of abstracts amassed lol! but most of the ms relevant ones have been posted here already so check em out! the vitamin D bunch here tend to be on 1000-4000 IU per day - i'm on 4000 unless i get out in the sun without sunscreen. which i have been doing lots of lately! i put on sunscreen after the first half hour to an hour.

the survey idea sounds great but i think it's rough to find common threads between all patients. i think it would be really good to try to analyze and group subsets though. my research focus has been nutrition and there certainly significant trends to read about in the literature.

i can tell you that in my case, from the genetic standpoint, i am northern european ancestry - first generation canadian with both parents from the UK. on the environmental side of things, i had terrible nutrition due to irresponsible veganism, plus smoking/drinking, for 15 years and developed lesions in my thoracic and cervical spine, plus some brain lesions, and i also have oligoclonal banding in my spinal chord. i have ongoing problems with candida but those have been around since birth so i don't know for sure how that might be related to my current health situation, but am taking measures to address it. i don't take any ms drugs, just vitamin/mineral/herbal supplements, and now i'm getting a fluconazole prescription. i have been b12 deficient (my lesions are thoracic and cervical - classic b12 deficiency lesions), also iron deficient and D insufficient (according to the 80nmol/l sufficiency argument), and i don't know about my uric acid levels but i can tell you that gout and ms are mutually exclusive (i have posted the study somewhere on this site) and being a vego i certainly wouldn't be in any danger of gout. [UPDATE: my uric acid was 194, bang on MS patient average. healthy controls = 290. second uric acid check i had dropped to 188. bad. relapse patients average in the 160s. third UA blood test results pending, update posted 2007 Dec 08]
so anyway i had spinal cord and brain damage. then i had a travel vaccine for hep A, and two weeks after that i had a kind of whiplashy bang on the head in a snowboarding crash, and within 7 days of the fall, i had lost all my large fibre modality sensory up to my collar bone. i might have had a flare recently but i'm not sure. for a few days i had spit going into my lungs all the time and had to be really careful when drinking water, and eating. i had been away on a trip and didn't take all my vitties. (i just went to the lab the other day for some monitoring of my serum b12, iron, and D3. very curious to hear if all this supplementing - when i am diligent with it - is actually doing me some good!)

this next bit is not really relevant but i feel like typing it so i will :D
i have my sensory mostly back now except for my hands, but it took months to walk and write normally again. and for a long time i couldn't type with all five digits and without looking but i can now, thanks to b vitamins. i'm still a bit shaky on the legs sometimes but by june of this year i was able to consider running down the stairs at home, and did it on the second try. my legs still do the jimmy (i think it's just typical rls) occasionally, but not as badly as before and my walking looks normal. and that's that!

k enough procrastinating i have to go put all these abstracts into essay format!
Last edited by jimmylegs on Sat Dec 08, 2007 5:24 pm, edited 1 time in total.
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Postby Melody » Mon Oct 16, 2006 6:47 pm

John had a bout of anaphylactic shock (Sorry not the shock you are looking for) before each episode of MS. Both due to severe nut allergies.We have been working on controlling his allergies as well as intolerances and are seeing success at this point. As we all know with MS that can change as quick as can be so we tap on wood and cross our fingers. Welcome aboard :D
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby Muu » Tue Oct 17, 2006 1:52 am

Hello LeoDaV. Nice to have you on board. There's a wealth of information and experience here. I'm constantly learning new things. I've not heard of the electric sock(!) oops shock theory but had always been under the impression that trauma can bring on an attack of ms.
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