NEED HELP WITH TREATMENTS FOR MY ADVANCED M/S...

By lisa627 Latest Activity April 20, 2011 at 9:39 am Views 3,517 Replies 23 Likes 3

lisa627

I WAS HOSPITALIZED AGAIN OVER THIS DISEASE TWICE ALREADY, BUT BEING THAT I DO NOT HAVE INSURANCE YET IM NOT GETTING THE TREATMENT I NEED TO CONTROL IT. MY SICKNESS HAS GOTTEN ADVANCED N MY BODY IS GETTING WEAKER. MY LAST MRI CAME BACK WITH MORE LESIONS N MY BRAIN HAS GOTTEN SWOLLEN. BUT BEING THAT I DO NOT HAVE INSURANCE YET THEY CAN ONLY DO BUT SO MUCH AND THAT IS TREATMENT OF STEROIDS. CHARITY CARE DOES ABSOLUTELY NOTHING TO HELP, I HAVE SPOKEN TO THE SOCIAL WORKER AND PRAY TO GOD SHE CAN HELP THE SOCIAL SECURITY GET MY APP APROVED CAUSE MY BODY IS GETTING WEAKER, BUT IM A FIGHTER N INDEPENDENT STRONG WOMAN THAT REFUSES TO LET THIS DISEASE BRING ME DOWN. EVEN IF I HAVE TO CHANCE MY LIFE ALL AROUND. SO HELP ME WITH ANY OTHER HELP I CAN GET FOR TREATMENTS, I WILL ACCEPT ANY INFO YOUS GIVE ME. THANK YOU AND GOD BLESS!!!!!

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Replies (23 replies)

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  • S'mone
    S'mone February 24, 2016 at 10:30 pm   
    Edited February 24, 2016 at 10:32 pm by S'mone

    Hi. I'm sorry you've not been well. I have RRMS and was diagnosed about 5 years ago. I was able to get free medication from the pharmacuetical company directly. Due to Extra Help with Medicaid. I was on Copaxone and applied for financial aid through them. It worked. Once my insurance came through, which was Medicare, it paid for it. I applied for disability because my left hand has semi paralysis. As a graphic designer, I've had to go down to part-time (I'm self-employed) and because it takes so much longer for me to complete work…and that's only on the days I'm actually awake. Fatigue is a big one for me…I now take 10,000 iud's of Vitamin D because of a very severe deficiency. I only take it once a week though. I got a local lawyer to help with my case…the forms and paperwork were just too confusing for me…I received disability on the first try. Lotta people judge because they don't understand. Fatigue is NOT being tired…I wish it was cuz then a nap would work. Not having full function of both hands makes typing harder and in graphic design software you tend to have to be able to use both hands at the same time. BUT!!! Technology, medicine and science has come so far in just the 6 years since I was diagnosed. By the way, the lawyer took his pay out of my back pay. It went back to the day I got an official diagnosis of Multiple Sclerosis. I was fired the same afternoon I told my boss I had it. While I KNOW that was discrimination, I also live in a right to hire, right to fire state.

  • yarmouth ma
    yarmouth ma January 27, 2016 at 10:00 pm   

    I know of 2 people with MS who actually receive help and services directly from the MS Foundation. Also I am not familiar with where you are from but in my neighborhood there is a free clinic who will see, treat and fill your prescriptions. Good luck and hang in there. Kim

  • yarmouth ma
    yarmouth ma January 27, 2016 at 10:00 pm   

    I know of 2 people with MS who actually receive help and services directly from the MS Foundation. Also I am not familiar with where you are from but in my neighborhood there is a free clinic who will see, treat and fill your prescriptions. Good luck and hang in there. Kim

  • PenguinAngel56
    PenguinAngel56 July 4, 2011 at 3:44 pm   

    You keep hanging in there where there is a will there is a way check with the medicine company's alot of them don't charge but once your on disability you will have coverage so get a lawyer they only can take 25% of the money owed to you . Also contact the MS Society and see what they can do for you or at least direct you in the right direction. Good luck Dear Sister.
    Huggs
    Darlene

  • lisa627
    lisa627 July 4, 2011 at 10:13 pm   

    THANK YOU FOR THE POSITIVE MESSAGE, IM WORKING ON GETTING APPROVED I WENT TO THE SOCIAL SECURITY DOC ON THIS PAST FRIDAY N THE WAY THE DOCTOR WAS TESTIN ME N SHAKIN HIS HEAD I HOPE AND PRAY TO GOD I SHUD BE GETTIN IT CAUSE SUM OF THE TEST HE WAS PERFORMIN HE ENDED THEM N SAID DO NOT FINISH U CAN BARELY STAND SIT DOWN ITS OK WAS I HURTING N I WAS LIKE YES.. THEN HE ASKED ME WAT MEDS WAS I TAKIN OR AM I ON N I TOLD HIM REBIF HE WAS HOW MUCH SO I TOLD HIM WAT N WEN N HE WAS OK OK HOW DO GET AROUND N I TOLD HIM A FRIEND N HE WAS CALL HIM OR HER TO CUM HELP U U SHUD NVR WALK ALONE U CAN NOT B ALONE EVER AGAIN U R DISABLED THAT Y WAS I ALONE THEN HE WALKED ME TO THE WAITING ROOM … SO I HOPE I GET SSD OR SSI DONT EVEN NO WATS WAT WITH THOSE TWO..

  • PenguinAngel56
    PenguinAngel56 July 5, 2011 at 6:25 pm   

    I was on Rebif but my liver started having problems so they put me on copoxone three yrs ago and wonderful. I have a electric wheelchair call the scooter chair once you get approved and when they ask you have no money! then you pay nothing. I also started taking Amyra (it's a pill)it helps with walking. I can walk longer and steadier . I have been taking it for close to 8 months now keep in touch sweet heart Huggs Darlene

  • lisa627
    lisa627 July 6, 2011 at 8:34 am   

    GM, I JUST STARTED REBIF YESTERDAY WAS MY 1ST SHOT, N MY WALKIN IS SLOWING DWN ON ME IM ALWAYS LOSIN MY BALANCE.HOW DO I GET ON AMPYRA OR DO I HAVE TO WAIT FOR THE DOC TO PUT ME ON IT…STAY IN TOUCH UR FRIEND LISA

  • PenguinAngel56
    PenguinAngel56 July 12, 2011 at 6:31 pm   

    You have to have your Dr contact the Company I'll see if I can get the info for you sometime this week . He may want to wait awhile to see how you are doing with the refib but if you still feel bad on it tell and ask for him to put you on copaxone. It is a shot a day but it was worth it for me. nd of course I will keep in touch Dear Friend Huggs Darlene

  • lisa627
    lisa627 July 13, 2011 at 8:54 am   

    IM GOOD WITH THE REBIF ITS WORKIN SO FAR N I HAVENT GOTTEN ANY SIDE AFFECTS MY THG IS MY WALKING N I DO NOT WANT TO LOSE IT FOR A LONG X.. TTYL WE WILL STAY IN TOUCH. HUGS N KISSES FROM A FRIEND LISA

  • PenguinAngel56
    PenguinAngel56 July 14, 2011 at 10:36 am   

    Great Just remember this keep on Smiling!!!

  • lisa627
    lisa627 July 15, 2011 at 9:30 am   

    ALWAYS DO EVEN WEN IM ALONE I ALWAYS END UP SMILING… LOL
    HUGS N KISSES TO U N THE FAM..

  • lisa627
    lisa627 May 3, 2011 at 7:55 am   

    ITS AMAZING HOW THE GOV HELPS DA ONES DAT REALLY DO NOT NEED IT, AND DA PPL DAT REALLY HAVE A SICKNESS WE HAVE TO BEG N WAIT FOREVER JUST TO GET THEM TO LOOK AT OUR SITUATION. ALCOHOLICS AND DRUG ADDICTS ARE WALKIN ROUND WITH NICE CLOTHES, DRIVING 2011-2012 CARS AND US DA REAL SICK PPL R CATCHING BUSES TO GET FROM A TO B. LIFE IS TOO FUNNY DATS Y I ALWAYS HAVE A SMILE N LAUGH EVERYDAY.. M M M THE GOV IS MY BESTFRIEND (YA RIGHT) LOL

  • oldbuttercup
    oldbuttercup May 3, 2011 at 9:55 am   

    Here are a few lines from a song form a movie called "Kazablan" (from 1974)
    " In democracy the food is nice,
    if you can afford a piece of rice,
    if you can't you can democratically drop dead,
    demo, democratia, demo , democratia.
    democracy is a beurocrat,
    you tell them about your pains and woes,
    they say come back tomorrow,
    demo democratia, demo democratia!".
    signed your friend,
    the government lol

  • lisa627
    lisa627 May 3, 2011 at 11:28 am   

    THANK YOU FOR THE SONG/LAUGH

  • oldbuttercup
    oldbuttercup May 3, 2011 at 11:39 am   

    Anytime your feeling lonely
    Anytime your feeling blue
    That's the time
    I'll be thinking of you!
    Keep singing and laughing
    That's what's it all about.

  • sadi23
    sadi23 May 14, 2011 at 4:37 pm   

    LOVE THAT…GOOD LUCK AND GOD BLESS YOU ALL

  • lisa627
    lisa627 May 14, 2011 at 4:52 pm   

    BUT ITS TRUE!!!! ONE CAN REALLY ONLY DO IS KEEP SMILING N THANK THE GOVERNMENT HAHAHA YEAH RITE!!!

  • lisa627
    lisa627 May 3, 2011 at 11:46 am   

    AWWWWWW DAT IS SWEET
    I DNT HAVE A POEM BONE IN ME, DNT EVEN KNOW HOW TO RHYME LOL..
    THANK YOU BUTTER

  • oldbuttercup
    oldbuttercup May 3, 2011 at 7:19 am   

    I am going through a similar situation with no insurance and trying to get approved for SSI. I also have hospital bills, and bills for tests that I do not have the money to pay for. My city even charges homeowners more taxes if they make modifications to their property to accommodate their own disabilities (talk about adding insult to injury!). It seems the government would rather put disabled people out on an ice flow or just ignore them, and hope they would go away or stop complaining.
    Well I'm not ready to give up yet.
    I hope you get positive results regarding your claim.
    May God Bless You

  • lisa627
    lisa627 May 1, 2011 at 1:41 pm   

    I HAVE TRIED EVERYTHG WITH EVERY1 BUT DAY LET DEMSELFS GO BY WAT ONE MAKES B4 TAXES AND I DIDNT QUALIFIED EITHER, NOW IM WORKIN ON TRYIN TO GET MY STATUS PROCESSED QUICKER WIT SSI, A LADY SWEET ENUF IS HELPIN ME OUT SO LETS PRAY TO GOD N SEE WATS D OUTCOME.. THESES HOSP BILLS ARE HIGHER N HIGHER N AS I GET THEM I TAKE TO SSA CUZ I DNT EVEN HAVE FOR MY DAM RENT LET ALONE A 15,000 HOSP BILL SHEESH.

  • aclover2010
    aclover2010 April 30, 2011 at 5:43 pm   

    yes but Medicaid is helpful..i do not qualify as I make too much money by 200 dollars…so i have to wait for Medicare…I am also fighting with my past employer…hoping and praying they will honor a letter they sent me..we will see..dont give up and things just happen..but do a little work each day…

  • lisa627
    lisa627 April 21, 2011 at 4:48 pm   

    WERE DOES ONE GOES TO REALLY GET HELP BECAUSE I READ N READ AND NOTHIN TO GET HELP WITH NO INSURANCE, TREATMENTS GET DENIED N MEDICATIONS OR (AND) TREATMENT ARE LIMITED. SO HOW IS ONE SUPPOSE TO KEEP ON MOVING. THE HELP NEEDS TO B EXPANDED IM TRYIN TO GET HELP FROM GOVERNMENT N WOW ITS SUCH A HASSLE. HOSPITAL BILLS GET BIGGER N HIGHER. AND THE HELP IS SO HARD TO GET.. WHAT AM I N EVERYONE IN MY SITUATION GOIN TO DO… AND FOR HOW LONG WE HAVE TO WAIT, I WANT MY LIFE N STREGHT BAK… HELP HELP

  • S'mone
    S'mone February 24, 2016 at 10:47 pm   

    see if there's a teaching university near you. They often have ms clinics. I go to MUSC- Charleston to the neurologist and also the neuro-psychologist (I'm starting to have cognitive issues) Bladder leakage is embarrassing enough, then to add insult, you have to wear a bulky pad or ugly ass undergarment diapers. I hate the mini muscle spasms I get in my legs, but am grateful the really big ones are far and few between.I'm on a LOT of medicines and if I take them as directed, I end up asleep…so I'd rather try to deal with them on a needs based choice…otherwise, I'd pass out…I'm also a mental health care patient and am on some heavy medicine with that.