[olecyn]

Has any information been written about how TOS and MS are so similar yet not?

I have a girlfriend who has MS and her flare and symptoms r on schedule with TOS similarities.
We can totally understand each others woes with the exception she has NO pain.
Muscle weakness, atrophy, flares in heat, eye blurriness, ear congestion, trremors, etc...

[gibbrn]

Hi Olecyn,

I have not seen anything....good question...little enough published about tos nevermind the combo. I will have a hunt tomorrow if I am up to it! I hope there is something. I have been searching for herbs used for fibromyalgia and ms to take for my muscular pain. Great thought......

love and hugs,
Victoria

[olecyn]

Interested in the herbal probiotics for the musc system.
I have been in a body ache flare for days now. Like I have the flu.
Whenever the weather changes or the barometric pressure drops I go into a different flare.
From pain to body aches that cannot be adjusted with meds
My internal thermometer has been on the rise.

[gibbrn]

Hi Olecyn,

I am happy to share what I take. I take a preperation by SISU called arthro-Flex. It has bromelain 200mg, boswella serrata extract 115mg, turmeric extract 165mg I take 2 pills 3-4 times a day. I don't always take them....I forget... this is basically an anti-inflammitory preperation...

I also take vitamin E for inflammation, Magnesium Malate 870 mg four times a day it is for muscle spasm...known to work from fibromyalgia patients.......it is made by a Canadian company called AOR you can find it on any canadian vitamin shop online.....I get mine from a Vancouver shop.....

I also take Carnosine 500mg.....twice a day good info on that on
pubmed .....just search for it on the site a great site to get info. it is an amino acid

As well I take L-Taurine 500mg once a day as it is also an amino acid.

I also take a Co-Enzyme Q 10 as a help to remove anti oxidants!

hope this helps some,
Victoria

[Sea Pines 50]

in my inimitable style i've been telling people of late when they give me that blank stare (you know the one) right after i tell them that i suffer from a severe case of TOS (and i'm not really in the mood to explain to them what that is), to just picture MS, with absolutely no public awareness, no financial backing, no funds, not an ounce of compassion from family, friends or co-workers, no face-to-face support groups or national network or foundation of any kind, no sympathy, no empathy, and no one believes your pain or other sx, not even your own docs...

that's TOS. there you have it. (this usually shuts them up!)

but did you guys know, and i've been meaning to check into this to make sure it's for real but just haven't been up to it, that apparently the national MS society offers a program called 'being active' that is open to ALL?

in other words, you do NOT have to have MS to participate! i heard about this through a woman i met through the larsi group. she told me, for example, that this program offers in studio city, i think (which is close to sherman oaks where i live [if you can call this living; oy!] a class called 'relax the body, calm the mind' at the public library on tues. nights. and it's free! she also mentioned a yoga instructor named eric small who teaches in van nuys and offers a package of 10 sessions for $30; now, obviously the form of yoga would be very gentle because it is geared towards folks who suffer from MS... she also gave me the name of the woman who runs the program, which is carolyn garfinkle, but i neglected to get her phone number. i haven't been able to track down the exact program through any of the national MS websites, but to be honest with you i can't say that i've really put a lot of time into it. i need to call my friend cate again and see if i can't get more info out of her.

because this could be an awesome thing for TOS'ers all over the land! if we can plug into programs and services already put into place by the MS foundation that would ROCK!!!

i suspect it is illegal for them to exclude anyone, and that may be WHY it is open to all, but i'm not 100% sure about that...

at any rate, i will do some more investigating when i get a chance - or anyone who is interested, please feel free to check this out and let us know what you are able to find out! the price, as they say, is RIGHT! and so many of us are living on limited incomes, or are fighting to get our insurance companies to pay for PT and/or would love to add something like yoga to our existing PT or OT programs, etc. this could be an affordable way to go!!!

there is some type of newsletter that the national MS society puts out on a community-by-community basis which would be very good to sign up for if you can, because it would then plug you in to a lot of other stuff being offered in your particular area, i would think.

until we TOS'ers are able to get our own advocacy group started, funded, legislature passed, public awareness raised, financing secured, all of that (seems so daunting, i'm exhausted just thinking about it!) piggybacking onto some of the national MS society's 'being active' progam's activities may just be a godsend.

i have to go lie down with my icepack/woobies now. i'm so tired anymore; can't hang! i am just losin' it, you guys. i need a wife or somebody to take care of me...

alison

[olecyn]

JK Alison,
I would be interested in knowing what Dr. Jordan's take is on MS vs TOS
And Dr. Collins' too
He does MRI/MRA's on MS patients

[johannakat]

MS patients are diagnosed via brain MRI or CT Scan? I can't remember which.... There is something that is easily and readily seen, as I understand it. (though I have no idea what it is !!)

so tired...must go to sleep

sweet dreams everyone.

[fareastY]

Howdy,

You might wanna ask them your question.
http://www.multiplesclerosis.com/askExpert/ask.aspx
OR contact them.
https://www.mspathways.com/index.jsp

Y