unusual

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unusual

Postby REDHAIRANDTEMPER » Wed Nov 09, 2005 2:03 pm

good afternoon everyone...just a question is it unusual for things to take so long in getting diagnosed...i have had problems for almost three months and seem to get slowly worse but nothing is showing up on anything...last thing i am doing is a neuropysch battery test..as he calls....so does it normally take this long or is it just me and my situation....kinda of frustrating for me..... :( chris
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Postby Melody » Wed Nov 09, 2005 3:26 pm

With my husband it took from February 1998 till Jan 2005 to diagnose. Yep takes long. Sucks but the day they actually diagnose you is well worth the wait.
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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Re: Unusual

Postby NHE » Wed Nov 09, 2005 7:46 pm

The relapse/remitting nature of MS can also contribute to the particularly long times that it can sometimes take to get a correct diagnosis. In my own case, I had my first symptoms in 1991. I was then completely asymptomatic for another 8 years and did not experience any other problems until 1999. Sometimes I think that if I had been correctly diagnosed at the earlier date that I might have been able to change a few things that would have successfully delayed the onset of further problems I now experience.

So, what would I have changed? These changes might have included the very changes I have made in my life now, such as eliminating substances from my diet, such as garlic and other compounds, that are known to increase the activity of T cells or increase proinflammatory factors such as IFN-gamma (I used to eat a lot of garlic), consumption of omega-3 fish oils (I've never really liked eating fish so I've been starving my system of these important nutrients), vitamin D supplementation (in my mid teens I used to be tan but I've avoided the sun since then), and I would've also switched over to green tea from the black tea that I used to drink (green tea contains the antioxidant epigallocatechin gallate (EGCG) which inhibits NF-kB which is a transcription factor known to be involved in the production of proinflammatory cell signaling proteins).

Anyways, these changes may have made a difference. Then again, they may not have. With a sample size of just one, it's extremely difficult to know especially with the relapse/remitting nature of the disease. If I had been diagnosed at that time and someone had told me that standing on my head would cure MS, then I could have been standing on my head for 8 years thinking that that's what was helping me. This is one of the reasons why studies need to be performed with large numbers of people in them, i.e., to eliminate (or at least reduce and account for) the random variation induced by the very nature of this disease. Of course, this also suggests that the dietary changes I've outlined above may not be effective for people with MS. However, I've found evidence in the scientific leterature that supports the conclusion that they should be helpful (still it's difficult to know for certain).

Yet, the important thing, which I alluded to in my first sentence, is to get a correct diagnosis. There are several conditions which can produce symptoms similar to MS. Many of those are treatable (and with considerably less expensive drugs). I would hope that anyone going through this difficult time can have the patience to do what is necessary to obtain a correct diagnosis.

NHE
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Postby REDHAIRANDTEMPER » Thu Nov 10, 2005 10:18 am

thanks everyone for your input on this...they have checked for other things also..arthris(know i am spelling that wrong)lyme dieseas,also they chacked at first just to make sure it wasnt a stroke of some kind...i am being patient here as best as i can..i do work ina health care facility..i am maybe a little more patient sometimes then i should be..but am tryiing my best to keep a chin up..i have kids and would like to kinda know what i have so i can sit down with my kids..they ask and i have to tell them i dont know yet...they worry alot about me...ya know kids...i have read some of the stuff on here and it helps me more then you know...i see people writing things about how their limbs feel with the tingling and stuff...its such a good description cause its what i feel...also the fog your head gets...i am started to get that once in awhile...so its nice to know that i am not the onyl one..thank you so much and i am glad i have found this site

chris
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Welcome

Postby Katman » Thu Nov 10, 2005 11:29 am

We are happy that you have found us. Have you been to CPn Help.org? Most of the people on antibiotics are there and an enormous amount of information about this and other treacherous bugs- yes, it is probably a bacterium- that we are battling. Some of us are winning. Please investigate the Antibiotic and Regimens fora on this site, also. Looking forward to your drama.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Arron » Thu Nov 10, 2005 1:30 pm

Just to be clear towards a new member, this conclusion that MS is "probably a bacterium" is at this point, an opinion that is being evaluated by numerous researchers around the world, as well as treated empirically as such by many on our site.

One of the great issues in curing MS is first figuring out what causes it, and at this point, a final answer is not yet clear.
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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Maybe a bacterium

Postby Katman » Thu Nov 10, 2005 2:15 pm

Thank you, Aaron

I stand corrected. In my own case, since nothing else out there had an impact, I no longer have any consideration for other possible causes. After fourteen months and such an increased ability to participate in all of daily life (except running) I tend to treat abx for me as a final choice. Again, I must commend you for a really good job. You are very diplomatic.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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