diagnosed with MS< give me some info and help

[hope1980]

Hi,
I was  diagnosed with MS, just yesterday. would you please let me know what the best treatments are, are they really treating or just called so? my doc said I have to be on one kind of injection forever. I am female 27 and worried about its progress., my knowledge is basically zero,
regards

[AnyaD]

I meant googled :O) Can't live without it now !!!

[AnyaD]

Are you sure you have MS? Do you think doctors know everything about everything? I am 27 years old and I was diagnosed with MS exactly 6 months ago but I still refuse to start taking drugs because I want to be a 100% sure I have it. I went to see doctors about different problems 3 times in my life and all 3 times I was misdiagnosed very big time. I learned to trust doctors but verify them. I've been living on the internet all this 6 months goggling every word that has anything to do with MS. I went to see a neurologist (I spent some time trying to find the best one in town) 6 months ago because I had a numb thigh and Lhermitte's symptom. She also found 2 lesions in the brain and 2 in the spinal cord. My numbness was gone in 1 months but I still have Lhermitte's. She wanted me to start taking Tysabri but insurance company didn't appprove it because I didn't try anything else.
Avonex was choice #2. While they were fighting, I found an MS specialist. He said everything says it's MS except lack of symptoms. We decided to wait and see.........But listen what I found out. When you see a doctor, they eliminate a bunch of stuff including B12 deficiency running a blood test. Serum B12 test is a standard test that neurologist run to eliminate B12 deficiency but it's known to be too insensitive because it doesn't show B12 deficiency in the tissue. I found out that the uMMA test (they test urine) is %100 accurate and shows deficiency in the tissue. In the study 83% of individuals identified with B12 deficiency in the tissue had normal B12 in the blood. Everyone with MS diagnosis has to run the test because it's hard to distinguish MS from B12 deficiency. B12 has the same symptoms and also causes lesions in the brain and spinal cord. I called my general doctor and asked him to run a standard  blood test for B12 because I didn't know about uMMA test
at that moment.  He told me that it came out normal, but I still asked him to mail me copies of results. I saw that my folate was very high, I goggled it and learned that high folate masks B12 deficiency symptoms and it's level in the blood. I found this lab on the internet (Norman Clinical Laboratory) and requested the kit to test B12 in the urine. They mailed it to me and I mailed everything back and now I am waiting for results. I paid $150 for it (only big labs do this tests, Mayo clinic charges even more for it)  I think it's worth it because I would be spendng much more on MS drugs. B12 deficiency can be provoked by laughing gas enesthesia at dentist's office if it's done too often with a short period of time. I don't know what my results will be but it's not a point right now because it may work for some of you here diagnosed with MS. We have to be our own doctors because our doctors will not spend as much time as we would finding explanations to our problems
- we aren't their children. Vitamin deficiency isn't a field of interests for neurologists, as well as any other problems that have nothing to do with neurology. I am saying all of this because I became totally deaf because I was misdiagnosed first time (I am fine now), 3 big scars on different parts of my body were results of second time and didn't have to have them. I hope to be right now, but at least I can say I tried :O) Good luck !!!  

[Heather3418]

How sweet of you to come on the forum and say such lovely things.

All the best to you also.  We wish you well as the New Year approaches and wish you good health.

Thanks again for visiting and please feel free to post anytime.

Heather

[9743km]

My name is Kim and let me first say I do not have MS.  I have an autoimmune disease, but it is a autoimmune liver disease.  It attacks the liver full fledge, as if it is a foreign part of the body.  Thankfully, it was caught on time, and prednisone and a drug called 6 mmp seem to be taking care of the problem.  It is, as well as MS, never goes away, but can stay controlled.  Anyway, I hit this button accidentally after I was done chatting w/my email friends as well that have my disease.  I  wanted to say you ladies sound like a great group of gals.  Such support and love in your words.  

We never know why some people get sick, and why some don't, I guess its all in Gods great mysterious plan, but I read words like you've all written to help this young 27 year old female out, and I think how wonderful.  You all show God's great Love.  Isn't that what life is all about?  The website I am on I have met 2 great ladies, that I email w/all the time.  One lives in Israel and one lives in Nebraska and I am in MI.  How the internet brings us all together.  Anyway, I will not take up anymore of your time, but you ladies keep doing what you are doing and HOPE1980 I wish you all the best.  All of you keep up the awesome words.  You are so encouraging...

Take Care Everyone and stay well!!!!!!!!!!

[Heather3418]

Check with the Copaxone website.  You can get your medication for free if your insurance won't cover it and you meet their income guidelines....

You're right...God is always with us.  Hang in there honey.  You are not alone.  We all walk with you...

All the best sweetie and please let me know what you find out about the Copaxone.  Looks like you and I are due to start this medication together.  I should be starting mine in the next week or so.  Again...we walk together.

Be well and have "HOPE."  All is not lost...

Heather

[hope1980]

Dear Carol,
Thanks for your reply, after two weeks I still cry whenever I think of it, I had steroids for the last two weeks (60mg, then 40mg and then 20mg) as the dose decreased the pain got more and more for me, and now I can't afford the copaxone(insurance won't pay) and don't know what to do. It is really good to have you guys with me, good to know there are people with you praying for you and taking care of you. I pray for all of you too. God is always with us and we will never give up.
Regards