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Do i or don’t i?

I can’t say if I am still convinced, mri shows over 30 leisions and spinal came back positive, (sorry for my spelling cognitive area not working well).

I was diagnosed 2010 am on Tysabri, and have a port, taking baclofen, Provigil, pristiq, Topamax, demeral.

I have been researching all over for something new to help, not acupuncture or pressure, or therepy or all the stuff we hear. There has to be something other then food and diet changes, because those things are not working, others with m.s. live normal lives why cant I? while others suffer so much more isn’t there any other options?

I need answers, may not get them but im one who will keep looking or die tryn….

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Comments

  • theresa45 author
    6 years ago

    just had my 46th bday oct 1st. well tysabri infusion’s bout a yr found out the lab and doctor and last appt found out they who ever they are missed labs twice, i have the jvc jv some virus i knw read it if u have it or get it, cause total disability, or a brain infection which will prob kill me. so doc tells me takes me off we butt heads anyway, and this has just made things way bad so iv visited th ER few times this month and my pain patch ( Butrans ) well i was allergic and adema several other issues er doc has to call my doc everytime i go in so my appt today, was unfortunatly extremly disaopoiting, not only did he not belive what i had to say in the 5 min i get to talk. he said that everytime i go it uses the tax payers money which i feel guilty for anyway iv worked all my life raised a son as a single mom wasn’t on welfare never used the dfs or family services. but then he said the next time go to the ER i will have to find a different Dr. Hows that for faith in our system n what faith i had left he destroyd today Dr. Williamson from Riverton, Wyoming, that only in this county has 2 nuerologists anyway. So have dicided to quit, im done. OVER IT REALLY i feel like waisting precious time i have is waisted on doctors i have not seen heard honesty or a single ounce of i give a S….T from any one iv talk to. I have had no remesion and i was diagnosied in march of 2010, so just done.

  • theresa45 author
    6 years ago

    OH yea i for gor to mention my Doctor basically told me did not belive me about why i went to the ER.!!!

  • Ann
    6 years ago

    I also was diagnosed in 2010, with primary progressive MS. I know it feels very unfair, you have a lot of strength in you that you don’t even realize is there. Keep looking for the right treatment, don’t give up, and above all things hold your head high when you’re happy. And cry when you don’t feel so good. Roll with the punches and you’ll find a strong person lives inside of you that you didn’t even know existed. It takes a strong person to deal with this stuff and you ARE strong. You may not feel like it but you are. The only thing they can do for my MS is give medication for the muscle spasms, the bladder spasms, etc., etc. Possibly physical therapy would help you too, water therapy is wonderful. No 2 cases of MS are alike which is the biggest thing that makes treatment so difficult I can’t walk half the time, and the other half that I can walk, I find myself falling over with the least little thing. My life ceased to be normal in November 2010 when I was officially diagnosed. Since then, it’s been a steady downhill slide, but I have to laugh at myself because I can really get into some predicaments. As tough as it is at times, try to keep a sense of humor and a positive attitude about what you’re having to deal with. And remember-YOU HAVE MS, MS DOES NOT HAVE YOU!!!!!!!!!!!! Us MS’ers are a special breed. We have it, it’s not going anywhere, but we deal with it. And you are special too, hang in there!

  • Monica
    6 years ago

    I was diagnosed in 2011. I’m also on Avonex and I’m also one of the fortunate ones. I have a sister who has MS also, she was on betaseron, I think that’s how spell it,for the first two years after she was diagnosed. Now she is not on any medication and she was diagnosed in 2000. She takes a lot of vitamin supplements for people with MS. One time she had and MRI and her Doctor couldn’t find the lesion in her brain. You could try vitamin supplements to see if that works. But stay positive. Always remember you have MS,MS doesn’t you. Good luck And God bless you.

  • Ann
    6 years ago

    Please stay positive…I know it is hard. I am one of the fortunate ones. I have been on Avonex for over 12 yrs. I came down with MS in 1981. There are so many new things coming to battle this. Please know you are Not alone. There are so many different types of MS…I heard that some MS Patients are using POT…not sure what it does but some have said it has helped greatly. Montel Williams, the former Talk Show Host had great results..
    What ever you choose, please stay Strong and know you are not alone…..New Medicines are being Studied. Think Positive… Keep looking for the right thing……I wish you the best!

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