Hi, Could We All Introduce Ourselves on this thread?

Arron · Posted: Mon Feb 06, 2006 7:13 pm Post subject:

Hi Casey, pleasure to have you with us.
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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.

scoobyjude · Posted: Sun Feb 19, 2006 6:24 pm Post subject:

Hi, my name is Judie. I am a 31 year old female from a suburb of Chicago, IL and I was diagnosed as probable MS in January. I had a major exacerbation in March of 2004 (although mostly sensory) with a brainstem and cervical spine lesion but at the time they thought it was a monophasic attack and I completely recovered. I had a minor sensory relapse in Dec of 2005 and it showed a little inflammation on my t spine Mri at T1 in Jan. I pretty much have completely recovered from that one too but none the less, the dx stays the same. I have been lurking around on different forums for about 2 months now but have found this forum to be the most informative and positive. I can't believe all the research info I have gotten from this site and the posters. The only thing that got me through Jan and over the "why me" feelings were reading all the research that is being done on MS. When looking on other sites all I found were reasons to put the covers over my head and cry. I understand how horrible this disease can be for some people and that we all live with uncertainty but I am trying to remain as positive and optimistic as possible. I'm not married yet and I haven't had any children either so I'm not ready to give that up. Right now I feel pretty good and although I know that that could change in an instant, the progress on treatment, prevention and especially remylination keeps me from giving up hope. I am going through blood tests now and plan on starting Rebif soon. This frightens the heck out of me but I'm going to do all I can to help myself. I am currently taking Omega 3, a multivitamin and Lecithin as supplements and I was thinking of tumeric. Can anyone suggest anything else or have a reason why I shouldn't take these? My neuro did not seem to have much faith in supplements but I trust people who are dealing with this condition to have more informed info. I just love the overall positive research vibe of this forum and how helpful the members are and wanted to say so. Thanks

remnants · Family Member Joined: Nov 11, 2005 Posts: 37

Greetings Judie,

I think you will find a considerable amount of information regarding supplements under the topic "Natural Approach." Another great site to see what therapies and supplements patients are using is "Remedy Find."

Take Care!!!
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Every morning I awaken torn between the desire to save the world and the inclination to savor it.
- E.B. White

Suey133 · Newbie Joined: Feb 08, 2006 Posts: 4

Hi there.

My name is Sue.

Iam 36 years old and am married (for the past 13 years!!).

We have one child - an 11 year old son.

I was diagnosed 14 years ago after an unexplained bout of optic neuritis and various bodily parts going numb.

I would very much like to talk to people who have an idea of what I'm going through. I am still walking (thank God) and look totally normal. But ...... I was recently referred to a neuropsychiatrist. Does anyone out there understand my frustration ( I've even been called a liar for the lack on walking aids)?

Look forward to hearing from you soon.

Sue xx

REDHAIRANDTEMPER · Posted: Tue Feb 21, 2006 8:13 am Post subject:

SUE,
i understand the frustration...i have been to my appointment with my neurphy testing...i felt like after having numbness and no feeling in my right leg for 6 months and also having the pins and needles feeling in my right hand and arm that it would be nice if someone would tell me something other then looking at me like i am crazy...i am going to have my second set of mri's this friday...sometimes they do make you feel like you might be making all it up..i have just had a appointment with my neurologist this last week..he said do the mris and then we will see where we are at..so what does that mean for me..absolutly nothing right now..cause they arent doing anything for me but give me something for the fatgue..which i really find to be helpful...thank god for that right now cause at least i can fuction better during the day right now....so yes i know the frustration there sue..if ya need to talk or vent will be here..i find this site to help me not get overly frustrated with things..so thank you everyone for all the help so far..

chris

Arron · Posted: Tue Feb 21, 2006 3:50 pm Post subject:

Sue and Judie-- big welcomes to both of you to our community!
_________________
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.

Suey133 · Newbie Joined: Feb 08, 2006 Posts: 4

Couldn't think of a way to get anyone's attention! I was diagnosed in Sep 1992 and would like some interaction with people who know about MS.

Am now 36 heading for 37 but basically feel like I'm 66 heading for 67!!!

So, please feel free to introduce yourself to me.

Look forward to hearing from you.

Sue

Katman · Posted: Fri Feb 24, 2006 10:39 am Post subject:

Hi Sue

I have had PPMS for nearly 11 years and have been on the antibiotics regimen for 17 months. Instead a being in a wheelchair I can and do walk/run a mile almost every day. Please visit www.CPn Help. Definitely a worthwhile pursuit.

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 2097

hi all, got sent this site and am checking it out for the first time. looks good so far Smile

so i was just diagnosed 6 weeks ago. in the last week, my lhermitte's sign went away. so i'm curious - will the lesion that caused it still show up on the mri, or do lesions go back to looking like healthy tissue between attacks?

Arron · Posted: Sun Mar 12, 2006 5:30 pm Post subject:

hi jimmy, welcome to the site. for specific questions like yours, please post them in the general discussion forum so the right people see them.
_________________
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.

sonatalady · Newbie Joined: Mar 16, 2006 Posts: 1

My name is Paula!

My husband has MS. He was diagnosed with RRMS when he was 18. He just had his 27th birthday!

He is currently on Avonex and can't WAIT for Tysabri to come back on the market! He hates avonex, and it's not really doing all that much for him!

We were just married on January 7th! I found this site when I was looking for more information on other drugs that are being researched right now! I want to be supportive of him, so that's why I'm here!

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 526

Your situation sounds like a perfect match for this site! I'm sure you will feel right at home here. You will find lots of information, lots of people who understand. Welcome and best wishes on your recent marriage!

oregoncowgirl · Newbie Joined: Mar 27, 2006 Posts: 2

My name is Patti have become member of several sites.

I have RRMS DX'd 01-14-05 was on tysabri( can't wait for return) now on Avonex hate it

I am 46 years old

I have to wonderful perfect daughters age 24 and 21 daughter number one is expecting in Nov 06

I raise horses and have 30+ I also raise Scottish fold cats I have a bluey dog (Austrail Cattle dog)

I live in Sunny Central Oregon and Love it here it is God's country.

Katman · Posted: Mon Mar 27, 2006 9:45 pm Post subject:

Hi Patti

Welcome to our wonderful site. I grew up on horses - buried my last mare 4 years ago and have had daity goats for 29 years. I am PPMS and have been on the antibiotics protocol found on www.CPn Help for 18 months and have gone from a 6.7 to a 2 on the EDSS scale. We would welcome you over to browse.

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 2097

Hey Judie I'm kind of like you, just turned 35 no hubby (bf tho), no kids. I got dxd Feb 1 06.

I got the blood tests and all (i gather you mean the baseline liver monitoring tests to prep for rebif) but then i decided not to fill the prescription and i'm going to fly drug free for a while and see how it goes.

Your supps sound great - i do the o3, vitamins, and lecithin, and am considering turmeric for the next trip to nutrition house.

I started taking a liver support pill (herbal blend) when I thought I would do the Rebif - haven't stopped yet - which you may want to consider also.

Vitamin D is good, my MS doc even said it would be good to take - your body puts it out when it needs to mediate immune response. I take 4000IU per day in lieu of sunlight, on the advice of my ND (i also have to get my reg doc to test my vit D saturation to make sure i'm not overdoing this fat-soluble vitamin). Will likely have to modify in summer.

B12 is neuroprotective and i take 1000mcg methylcobalamin (not cyanocobalamin) daily. My b12 was super low for years - as in, making me stagger low - out of pure dumb stubborn-ness, and i am now dutifully keeping it above 500 (it's 640 actually) since that's the min of the normal range in japan (where ppl don't get ms). to help w b12 metabolism i take 1 tbsp per day of a calcium liquid.

I was taking B-complex daily but had to cut back to q 3 weekly, coz my folate went through the roof and made me itch like mad around the shoulders - kinda glad i had lost sensory below that lol!

Lots of ppl are iron deficient too so watch out because you need it to get oxygen to your cells so they can do what they're supposed to like make myelin Confused

and there's enough fatique associated w/ this disease without being anemic too. my hematocrit improved since i started adding iron too, so it's working!

I take ginkgo biloba for the brain and circulation, and my ND said to look into OrthoMind when I run out.

I take acidophilus, digestive enzymes and 2g C daily to help ensure the bod is able to utilize everything.

Vitamin E is in there as part of my A-C-E antioxidant angle (i get A from many foods and the omega/cod liver oil supplements so I don't specifically take A)

Think that's about all. Oh there's a multi-mineral in there since i drink filtered water... I usually have a mega-pill-fest (~16) after lunch every day lol

I have seen big improvement since I started and it's just my C5 thru C8 dermatomes that are really messed up any more. stupid arms. stupid hands. T1 through T12 are WAY better, just a little of that tightness around the rib cage. kinda shaky but that should improve too.

My ND also said run cold water at the end of each shower to get the blood moving suddenly which is supposed to flush toxins. i said sure but in practise it is just not happening. so instead i am considering using niacin to get the body flush and move the blood around that way.