This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Paul,<br /><br />Welcome! Thanks for introducing yourself and we're glad you've found the site helpful.

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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.

...because I rarely wear underwear, but when I do, it's always something unusual."

Some of you may recall that exchange from Bill Murray in STRIPES, and it's one of my favorites. I just found this board, having spent most of my MS time on MSWorld.

My name is Todd, and I live in Hermosa Beach, California with my two dogs - Ike & Tina. I'm 41 and was diagnosed in 1994 at the age of 30. I had a bout with Optic Neuritis, and got the RRMS d/x soon thereafter. I'm still fairly active and mobile, but my abilities have been substantially reduced, although I still bike and run everyday. I don't use any equipment, but I increasingly find I am subject to odd itching, strange bladder and bowel sensations, and a lot of tripping and falling.

I was on Avonex from 1998 to 2005, but stopped after I went on Tysabri. That's right, the banned drug. Here's what happened:
I was in the two-year study on Tysabri and Avonex with Dr. Kachuck at USC. When it concluded, I stopped taking Avonex and went solely on Tysabri as part of an open-label study. I had three infusions before the drug was pulled, and have since resisted returning to Avonex as a non-violent protest.

I look forward to robust and animated discussions.

Hi Todd-- welcome to the site! You may consider sharing&nbsp;the details of your Tysabri experience, as I'm sure many would be very keen on hearing how it worked for you. Welcome again

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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.

I should introduce myself.

Hi I'm Cheesy. I'm 32, happily married and I love reading mysteries.

I believe my diagnosis is either "Possible MS" or "Nut job" (at least in my Neurologists eyes). When we first met he seemed to focus a lot on the fact that I was planning my wedding at the time. Because you know all us girls care about is our special fairy princess day being perfect we just work ourselves into a tizzy.

But in fairness my symptoms and test results are firmly in that grey area between Fibromyalgia and MS. So we will wait and see.

Whatever the diagnosis I'm pretty committed to a cure for MS. I spent my teen years watching an aunt (by marriage) basically be eaten alive by a particularly nasty form of PPMS.

I live in Wisconsin and we're trying to establish publically supported Stem Stell Research like it will exist in California. This is important because:
1) We have the team that first isolated and cultured embryonic stem cells so we're good at it.
2) Our University is one of the top four research institutes in the U.S.
3) A foundation associated with the University owns five of the stem cell lines that are eligible for federal funds

I'm crossing my fingers for all of us

Hi Cheesy, great 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.

I thought I would introduce myself here...

I was diagnosed with MS at the end of June this year. My symptom was Nystagmus in my right eye, similar to diplopia, however it is not optic neuritis. I had an MRI, Spinal Tap, and VEP. My MRI showed at least a dozen small spots, evenly spread over my brain, the spinal tap showed a 1 point elevation from the norm's for CSF protein, and the VEP showed delayed response in both eyes, although strangely, my left eye showed a slower response than the affected eye??

Since then I have had enough time to re-evaluate my life, and my priorities. I've not had another symptom since (knock on wood). One thing I noted from my pre-dx days was that I was drinking a massive amount of Diet Pepsi, and eating horribly. I changed all of that about a week after diagnosis and doing an obsessive amount of research. I decided Dr. Embry's approach would be sufficient for me as far as diet goes and so I stuck with it. I have found that it was fairly easy to stick with since I love salmon and tuna, and chicken. Like I said, I haven't had another symptom, and I feel better than I can ever remember. I can think faster, and have more energy.

I am going to push my neuro for another MRI in a couple of months. I want to see what the disease looks like now.

Oh yeah, I forgot to mention. I am also taking Rebif 44mcg tiw. I have no side effects from interferon; however I don't like the injection site reactions. I always get them in my abdomen, but never in my legs??? Out of fear I take Rebif, because if the diet doesn't slow it, maybe the interferon will buy, and I do mean BUY me another 30% worth of time.

Did I mention that MS sucks??? I realize I am lucky (so far anyways) but what is up with the researchers not being able to figure this beast out??? what the heck?

Hi Viper, welcome! I liked the pun regarding "BUYING" more time lol. Glad 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.

Hi Viper,

You said:



We all agree with your first statement.

On the issue of researchers - don't get me started. I posted a paper recently which showed that the revenue to the companies who produce the interferons and copaxone is $4 billion a year. And from what I have seen most produce research papers which show how wonderful these drugs are (would you buy a bar of soap from me if it only got 30% of you clean?).

They've been working on this disease for 60 years yet the advances in IT, MS tissue banks, lesion projects, internet access to all research papers doesn't seem to have made any difference. At the start of every decade we are told that there will be a cure in ten years. Remember they've got mortgages and children so we wouldn't want them to be out of a job by cracking this disease once and for all. They came up with a mouse model of MS called EAE which they can actually cure. The trouble is that it doesn't seem to have much read-across to human MS. But it keeps them employed.

Best wishes

Bromley

48 yr Married mom of 3. Still in denial, moving slowly toward acceptance. Dx w RRMS two weeks ago. MRI, Spinal tap and vague symptoms. I have felt something was wrong for about 8 years. I just thought I was having a bad bout w/ menopause Or was maybe overdoing the working student supermom thing.

My neuro said I had what appeared to be about 30 spots on my MRI. This seems high compared to what I have read from others. He has recommended Copaxone but I haven't started yet. I told my family doctor I wanted a second opinion, but I think I'm just buying time before I have to give in to some form of therapy.

My daughter, now 17, had a questionable MRI, 5 or 6 spots, about 4 years ago but they stopped worrying after three periodic MRIs showed no progression. She did not have the spinal tap. Now it looks like we may have to re-visit that issue as well.


Great site - great people - guess I'll be around for a while
Blessings,

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Jude

Hey heyjude!
So sorry to hear of your situation. Of your daughter, also.
I am 45 yr. old mom of three sons. I felt like something was wrong for about 10 yrs before dx. Vague symptoms.

I was dx'd with ms in Dec. '01/Jan "02.[Happy Holidays!! NOT... ]

My normally vigorous, athletic 17 yr old has had very similar vague symptoms for just over a yr now. He used to hang with friends, excelled in school and sports..but now that is all a big struggle. His started with same sore throat as me. It just stayed with him. Pos for strep, but it seemed the normal strep meds did not get rid of the lingering fatigue.
I brought him to an ENT, but he was denied a tonsillectomy--not sick enough[ummm.....come again??] So we had his wisdom teeth pulled which appears to have arrested the constant strep infections.
But I still worry about him. Last week, he told me his fingers "did not work right" while he tried to type. We have talked to his pediatrician, who does not seem concerned. She thinks he's just depressed/worried about my dx. I don't know what to think.

I feel for you. I am still in a kind of denial and I've had nearly 4 yrs to get used to the idea. I sincerely hope that this is treatable with the antibiotics I will soon be trying.

Have you and your daughter been tested for Lyme and co-infections?
My son and I both tested neg for lyme.

An interesting note: My neuro tells me it is very unlikely that my son would develop ms. He told me to retest him for lyme, etc.
Hmmmm.. maybe that's the reason he won't prescribe anything other than Copaxone for me?? [Maybe not so certain of his dx for me anymore??] Just a dream I guess.

There are plenty of well-read and intelligent folks here to offer ideas and support.
Welcome aboard!

Kitkat2

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Holding out hope for Liberation!

welcome, jude

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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.

Hi I'm Terrel. Diagnosed with RRMS Aug 2005, curently on Copaxone and feeling great.

terrel, welcome to the site and it's great to hear that you're doing so well!

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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.

My name is Nathan Kennard (My family website). I am 32 and live in Utah, USA near Salt Lake City. After some numbness and tingling in my face and lip I had an MRI( April, 2004) which showed 'innumerable lesions' in both hemispheres characteristic of MS. After recounting my undiagnosed medical history over the previous 5 or 6 years, the doc said I definitely have MS.

I reluctantly began Copaxone therapy shortly after diagnosis. I experienced migrating sore redspots which took increasingly long to return to normal. I hated shooting myself even more when I read the data in support of the drug and found that, like many other MS drugs, it is not very promising.

I quit Copaxone in May, 2005 and have been on low dose naltrexone (LDN) since June, 2005. It is probably too soon to say that it is working, but I am very happy about not paying so much to poke myself every day for an outside chance that I will benefit from the drug (Copaxone). With LDN, there is no clinical trial data so a person is free to believe whatever halucination they concoct without the interference of objective data. As far as that goes, I have had only good side effects from LDN (lost 10 pounds, hair and fingernails seem to be growing faster, vividly entertaining dreams and improved cash flow).

I hope everyone who comes here finds relief from what can be the onslaught of this troubling disease. Someday, a cure may be found.

Best wishes,

Nathan

Nathan-- thanks for an excellent introduction. We are glad 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.