Did you know?

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Did you know?

Postby OneEyeBlind » Tue Mar 23, 2004 10:55 am

Did you know that there is a diagnosis of PRobable or Posible The other day I was surfing the web and I found that there is a such thing as probable MS. That is what the Dr. keeps telling me I have. First it was possible MS then it was probable MS. I came across this web page that rates the disease by the symptoms. One of the diagnosis: Probable MS. I had no Idea.

Pasted from Reference Web address: http://www.albany.net/~tjc/diagnosis-criteria02.html#

Definite Diagnostic Categories for Multiple Sclerosis
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Definite MS: Consistent course (Relapsing/Remitting) with at least 2 bouts, separated by at least 1 month; or slow, stepwise Progressive course for at least 6 months Documented Neurologic Signs of Lesions in more than one area (Functional System) of Brain or Spinal Cord White Matter. Onset of Symptoms between 10 and 50 years of age Absence of other more likely Neurologic explanation -
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*Probable MS: History of Relapsing/Remitting Symptoms Signs not documented and only one current Sign, commonly associated with MS. Documented single bout of Symptoms with Signs, of more than one White Matter Lesion Good recovery, then variable Symptoms and Signs Absence of other more likely Neurologic explanation
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Possible MS: History of Relapsing/Remitting Symptoms No documentation of Signs establishing more than one White Matter Lesion Absence of other more likely Neurologic explanation
_ __ __ __ __ _ _ _ _ _ _ __ __ __ __ __ _ _ _ _
So here I was bugging the doc for a diagnosis and he had diagnosed me the whole time. Du! I have not chosen at this time to medicate. THere was still that self denial thing going on ya know? I see the doctor again in June and will discuss the possibility with him then.

Check out the site. Advice or opinions? Let me know.

Main Link: http://www.albany.net/~tjc/links.html
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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Postby fightingms » Tue Mar 23, 2004 1:58 pm

Karen, I love this site and have it in my favorites. I think I like it so much because it is an easy read. It is very easy to understand, and it does a very good job of explaining MS. I always thought it was a good link to send to non MSers.

I guess I can say if you are in this category....good for you...the monster has not done enough damage to show itself. Do everything you can to keep it that way.

Advise....Research....Research....Research....The more you learn about MS, the more able you are ready to deal with the reality of having it. The more you learn.......the less frightening it becomes.......Follow your heart.....

Take care and Good luck.......Kim
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Postby 2gentle » Tue Mar 23, 2004 5:57 pm

Wow! Thanks for posting this link-I love it!! I usually hit JJ's Joint several times, and some other sites, (like this one,lol) but now I have another cool site, thanks to you! :)

And I for one, didn't realize "probable" or "possible" were dx's! Who knew??? Sound like some confusing things esp for one's insurance!

Take care,and follow the advice of research research, research!
Every journey begins with a single step...Diane
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Thank you

Postby OneEyeBlind » Thu Mar 25, 2004 8:16 am

Dianne and Kim,

Thanks for the encouraging words.

I am not medicating at this time. My doctor gave me the choice. I guess I am not yet certain and well, I just hate to take the medication in case there is the remote possibility that I don't have it. And then if and when I need it there is the antibody thing. He told me if it was a cure he would advise it. I feel great right now. My last MRI came back clear so it is just a waiting game. I do surf a lot and try to read everything I can get my hands on. I figure the better educated the better served.

Anyway, I thought the site was interesting and wished to share it with everyone. Glad you liked it.

Be well,

Karen

P.S. Good Luck on the study Kim! Keep us informed!
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Thank You....

Postby 2gentle » Thu Mar 25, 2004 1:08 pm

Hi Karen :D

Thank you for the reply, and I'm glad you're doing well....
I noticed you said your MRI came back clear...was it an MRI of
*BOTH* the head AND spine??

Sometimes if just an MRI of the head only is done, there may not be any lesions found...the lesions could be spinal, and that's why I asked...spinal lesions will show up in the neck area.

I wish you well with whatever you choose to do, tho...But keep in mind that MS is "silent"...you may feel really good, and do lots...and the MS continues to progress, or work...it doesn't stop even though you feel good.

Take care,and good luck in your decision!
Every journey begins with a single step...Diane
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Postby fightingms » Fri Mar 26, 2004 8:53 am

Diane....Ditto on your reply to Karen. Karen, here is a good link to check out about MS. It is a very detailed explanation of the disease process and a very good read. I like to pass this link along to newly DX persons.

The site is written by Neuro's. I don't know how often they up-date it, I have had it in my favorites for years. Good Luck to you Karen........Kim

http://www.pneuro.com/publications/ms/index.html
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Postby Shayk » Fri Mar 26, 2004 8:09 pm

Hi Kim, just visited the site you posted. :)

It does have a lot of info and as a newly diagnosed person I really appreciate your passing it along.

I'm going to add it to my favorites so I can finish reading it and have it readily available for reference. 8)

THANKS!

Sharon
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Postby fightingms » Sat Mar 27, 2004 9:17 am

You are very welcome Sharon. It has been one of my favorite sites for newly DX persons for years; it is very explanatory... 8) .....Kim
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Postby Guest » Tue Mar 30, 2004 11:02 am

Kim,

Thanks for the info. I bookmarked it and will read it in depth when I have more time tonight caise I am at work now.

I hate the unknown! I try to read everything I can on the subject. Especially when it concerns my health!

Sharon and Dianne,

I have had about 6 MRI's of my head and one of my neck because I had symptoms (see my journal, but I warn you its lengthy).

They did see a lesion in my spine at c6/c7 but confirmed that it was from around the same time as the other lesions that were seen in June when I experienced the Optic Neuritis. It didn't glow but was faded as the MRI was done in December, he predicted that it was from around June.

I appreciate any imput I get from others who are going thru the same thing as me and can give advise or just listen.

Thanks!!

Karen
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Postby Shayk » Tue Mar 30, 2004 8:07 pm

Karen

My "diagnosis", vis a vis MRI info, if you will, was certainly easier (even though my symptoms) were 4 years apart. I had to demand the brain MRI, but bingo, I had more than 10 lesions in all the right places. :(

That was last fall and since then my focus has been on trying to get the best possible management and treatment of my MS in place. It is an exhasuting, confusing, and challenging experience.

First was deciding on one of the CRAB drugs. I had two opinions that I was "an excellent candidate" for Avonex or Copaxone. I went with the Avonex and can say I'm finally getting used to it (more or less).

Getting the second part of my treatment in place, hormone replacement therapy (since I'm 57) using estriol since that seemed so promising in the UCLA trial, is a trip I haven't finished. :lol:

It has been a trip and a half! :lol:

In the course of doing that I have managed to convince myself at this point that having well balanced hormone management is a piece of my "best possible management and treatment" for MS.

From what I've managed to read, my personal advice for all women with MS would be to have their hormone levels checked (estradiol, progesterone, testosterone, DHEA and cortisol) via the "saliva" test. (Blood tests for estrogen apparently don't measure "free estrogen".)

As to the MRI's, I think I've read several times that you can have MS symptoms without any findings on MRI. Were the MRI's with and without contrast? I've read that's really important.

Plus, if "it's not autoimmune", I guess it may not show up on MRI?? You might want to take a look at that thread.

It is terribly frustrating, but do take care and do keep reading.

Sharon
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Postby OneEyeBlind » Wed Mar 31, 2004 10:40 am

Hey Sharon,

Sorry I replied as a guest on the forum. Forgot to sign in.

Hormone testing hu? And you would recommend this to every woman, any age? I'm only 38? Let me know and I will ask my doc about it.

I can pretty much say I have excepted it-that I have MS but I guess because I have not had any new symptoms I am still slightly skeptical...So far I have been fortunate.

I have had all MRI's with contrast. I guess because I started with the Optic Neuritis they assumed from the start that it may have been MS. Part of my problem was that the leisions in my brain MRI were not showing in places consistant with MS. So at first they were a bit stumped. Then in December I had the neck MRI and that showed a lesion. That was pretty much the clencher I guess. Thats why the diagnosis is PROBABLE MS!

Karen
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Postby Shayk » Wed Mar 31, 2004 6:41 pm

Karen

Glad you checked back! The frustration in getting this all together for me is back and at this point I don't know if I would stick with my recommendation about the baseline hormone evaluation.

Someone finally commented on the estriol (a form of estrogen) thread who said they'd tried it for a year and it didn't work. :(

So, that said, the reading I've done about hormones in general and their interdependency, lead me to think that trying to achieve a "balanced" hormone state would be great complementary therapy for MS for all women.

Maybe the easiest way to check that idea out for yourself is to go to a bookstore that has a coffee shop and take a look at chapters 2 & 3 of:The HRT Solution by Marla Ahlgrimm and John Kells.

I think the same authors wrote a book on PMS, so I'd bet much of the basic info is the same. "Hormones 101" and "The Rise and Fall of Your Sex Steroid Hormones". That chapter ends with "Cortisol, DHEA, and the Effects of Stress". So, overall and more recently the info on stress and MS made me think I'd better get these hormones "balanced" and maybe all women should. ????

Moving on, I didn't bring the web address home with me, but one thing that might be helpful for your "self-assessment" is to go to the Multiple Sclerosis Association of King County web site and check out their "MS Physical Symptom" forms (long form).

Taking a look at that might help you personally decide if you think it's MS and gives you a way to summarize info for the docs.

Also, are the neuro's you saw "MS" experts? (Another thing I keep reading is important.)

I'll say again...what a confusing, frustrating, challenging trip trying to figure out what to do... :roll:

Sharon
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re: probable MS

Postby jazzcat » Wed Apr 14, 2004 10:00 am

Hi One Eye Blind,

I am writing to you to let you know that my own history with MS was that I had optic neuritis in 99. I then had steroid treatment for it, as I was told it could develop into MS later. For a few months, I had a few symptoms (numbness, tingling, shocks) and then the symptoms went away. I didn't have anything until four years later when I had an attack that affected my balance and my ability to stand and walk. That was last year at this time. I have recovered somewhat, but not completely.

I write all this because you are in a serious place. As you well know, MS symptoms can be silent while the disease is active in the CNS, only to show up as symptoms later. I learned this the hard way. Doctors didn't take me seriously and I went unchecked for too long. I am the one who has lost. It is best to get treatment early, if you chose a treatment. I strongly encourage you to check out the Swank Foundation website and learn about a low-saturated fat diet with supplements that has been used effectively as a means of slowing or halting MS activity and symptoms. This diet has not been proven "scientifically" but many people follow it. Also, if you chose to go on the CRABs, it is best to start early.

As someone else said, research, research, research. Ultimately, what you decide to do is up to you, but it sounds as if you are a pro-active person.

Here's wishing you good luck and wellness!

jazzy
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Postby OneEyeBlind » Thu Apr 15, 2004 10:17 am

[size=18]Hey Jazzy,

I found your reply interesting. I went and checked out the site you mentioned "SwankMSDiet" and saw a forum YOU posted there called "Numbness upon waking". I get the same thing!! I thought it was from laying in the same position for too long. Or I also contributed it to problems with my shoulders. I have had one shoulder surgery and was scheduled for the other shoulder last summer but I postponed it due to Optic Neuritis, spinal taps and MRI's.

The thing is I have experienced that and would never in a million years have contributed it to MS. Actually, Now that I think about it, it seems to come and go as I haven't had it happen recently...

I printed just your post and replies and signed off as I am at work, but my next question would be:

Does this happen to people who don't have MS?

It might make a good survey post for this site. Would you be interested, just out of curiosity to see what percentage of our fellow ThisIsMS members experience the same thing?

Something to think on...

Thanks for the reply! :P

Karen (OneEyeBlind) :wink: [color=darkred][/color
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Postby jazzcat » Thu Apr 15, 2004 1:39 pm

Hi again, One Eye Blind (and all),

I'm glad you found the Swank Foundation website, as it is, I believe, an interesting site for people concerned about MS.

It's interesting that the 'numbness upon waking' strand resonated with you. I believe that there are other reasons that one can get numbness upon waking, including sleeping on a body part, but in people with MS, it is likely related to the MS. (At least that's my thought, and I am no medical expert.) If you are in the 'probable MS' stage of diagnosis, you may not be picking up on symptoms that a good neurologist would catch. (Or that you might catch in retrospect after a clinically definite diagnosis.) For example, I think I told you in my last message to you on this site that I had O.N. and then some tingling/numbness in the months that followed. Then I thought I had nothing for four years until my attack last April, which was quite obvious. What I had noticed a couple of months before the attack and in anticipation of getting a yearly check-up was that my big toes don't bend. They have become concave at the middle "knuckle". Yet, my little toes are normal. I did not know this then, but have since learned that that is a sign of spinal cord damage (and something the neuro will look for if he/she suspects MS). It was a sign that a competent doctor would pick up on, but something I thought might just be aging. I remember thinking, "Gee, that's funny. It must be my body changing because I'm getting old. I'll have to show that to my doctor at my next check-up." Also, in the years right after the O.N. I underwent a long period of job-related stress. I did notice that my spelling, speech and short-term memory were affected at different points through those years. Nothing was glaring, except to me. I thought it was odd and attributed it to the stress, which could have precipitated it. Or, based on my MRI last year, could be coming from small lesions related to MS.

At any rate, I advise you to keep pursuing your health and wellness. Keep a journal of anything that seems a little different or funny. That may help you and your doctor connect the dots.

BTW, did you see on the Swank website the strand that Wall posted re: stressing that the Swank diet isn't just about avoiding saturated fats? He stressed that it is about putting the essential fatty acids in your diet too. Then he posted this link:

http://www.mscrossroads.org/diet.txt

(You may already have been there, but, if not here it is. There may be other readers interested in the site too.)

As you will see from that page, there is information out there about lipids and fats and other dietary/vitamin topics and MS or related conditions. I am all in favor of making my life healthier. If there are changes I can make to wiggle the health margins a little, I will try. Even if the changes I make only affect my general health, it is worth it.

Anyway, take care.

jazzy
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