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I have been a member of this group for a while now.
I am not too involved, but sometimes enjoy reading
the note from other, or involved members. I have
never been asked my whole story, but would love to share it
I am a 45 yr. old white female. I met my husband to be in 1979 when my family moved from PA to MA. We moved across the street from his family. He and I began dating about 3 mos. after we moved in. I was 19 and he was 25. I thought this was wonderful. Our relationship grew and we were to be married on Aug. 29, 1982.. 3 weeks before the wedding I I lost total vision in my left eye. No other symptoms. My eye doctor chalked it up to nerves. MRI's were not yet available. I didn't let it get me down, as this was an exciting time in my life. The wedding went on as planned, everything was wonderful. My vision slowly started to return over the next 6 months. Trips to neurologists, optic neurologists, rheumatologists and many other specialists still led us nowhere. As time went on, my walking became a bit unsteady, I tripped just a little. I had my 1st child in Dec. of '84. 5 months later, my 1st Mother's Day, I was put in the hospital by my neuro ophthalmologist. I has lost control of my 'good' eye. We did a spinal tap, which showed some inflammation 'somewhere' in my body. The eye quieted down and life went on. Legs continued to weaken a bit. "Finally" my neurologist suggested the possibility of MS. No tests to prove him right or wrong. A short time later I became pregnant again. My son was born in August of '87. 6 months last my rheumatologist sent me for an MRI which was often used those days. Sure enough, MS was the diagnosis. I asked my Dr. of I were going to die from it since I know nothing about it. He reassured me that I wouldn't die. I then asked him how I could live with it. Well, for the past 18 years, since the diagnosis, that is what I have been doing. So many life changes and challenges since then! This started when I was barely 22. I am now 45, a divorced mother of a beautiful 21 year old college junior and a handsome 18 year ild college freshman. I have been battling so many challenges. I lost my mother to cancer in '83, was diagnosed with Lupus years ago, 19 months ago was hospitalized with Aden carcinoma of my right lung, found accidentally because of constipation, had a 3 1/2" benign tumor removed from my liver, 3 weeks after the cancer on my lung. 5 weeks ago had another benign tumor removed from my urethra. I may have forgotten to mention that my bladder decided not work properly. I have been self cath'ing for over 11 years now. Hence the urethra tumor. If I had to sum up my life........I will tell you this: I am a much, much stronger person that I would have EVER given myself credit for! Life is so much more tolerable than I ever thought it could be! I have a wonderful family who cares so much! I am still working part time, I use a walker now, I have a scooter which gives me independence, I am dating a wonderful man who accepts everything about me. I have been the ambassador of the MS walks 7 times, I do a little public speaking. I am so grateful for everything and everyone in my life! I have to say that having a positive attitude has been the biggest and best savior in my life.
Thank you for listening to my story! I am more than happy to share so much of my story and life with anyone who may be interested!
About Me Hi, my name is Cathy. I am 39 years old. I have had symptoms of systemic lupus since 1980;s. I was finally diagnosed in 1996. After 3 miscarriages I did finally have 2 children .I did not know of the lupus then nor did my dr;s.In 1994 I started having a lot of fevers, joint pain, rashes, raynuads, hives. so I went to dr . they treated me just with ibuprofen & sent me on my way. Finally in 1996 i got someone to take me seriously & i was diagnosed with lupus. In 1999 my lupus was active so I started on plaquenil, pred & immuran . methotrexate that year. In July 2000 i started having odd neurological problems. i developed optic neuritis in my left eye, severe spastic muscles in my arms & legs .having difficulty walking nor standing. Up till this point i had been exercising & walking 1 hr a day. Once that started my life hasn't been the same since. In the years 2001 I tried to find out what was causing these problems but a lot of unknowns & not very knowledgeable dr's. After that I did not go to dr;s till 2003.In 2003 I got a new primary & things started to go different. He got me into see a new rheumatologist, neurologist & finally now in 2004 a neuro-opthamologist.The neuro-opthamologist discovered that i have bilateral optic neuritis, spasticity, cns lupus/MS , vasculitis, & antiphospholid syndrome. So finally after all this time a name to the weird odd things...since 2004 I have been on prednisone at a level of 60mg, baclofen 60mg,ultracet 2 pills every 4 hours for pain,.. (they don't really seem to do much personally). the pain from the spastic muscles seems unreachable to me. This past year the muscles have started to atrophy and my bad leg the rt leg i can no longer move at all. the spastic muscles causes the inability to move. My walking is very bad I walk short distances with a cane but anything else is a wheelchair deal. nt too much fun since i just turned 39 this wk. My latest problems as of past 2 weeks has been another bout of optic neuritis. woke up one night to being blind in my rt eye again. so the blurry and double vision have been greatly worsened since that time. Last dr appt one of those humbling times. You know you ask the question So will things ever change or get better? Dr replies in a sad look.... No I'm sorry,. it won't ever get better... I was sad for bit but what can you do but look fwd and keep on going. well thanks for those that read this and letting me share.
I see that others have posted their story so thought I'd share mine too.
First of all permit me to say I have told my story to others before and the response was always that it made them stop and think that when they thought they were going through a difficult time, it made them realize that they were very fortunate. Having a bad day? This might make you appreciate things you take for granted in your life. That is my purpose in telling my story here. Let's all try to be positive and appreciate life! I have had MS since Dec.97, thought I had the flu at first. I believe this "bug" was the catalyst to my MS. Family Dr, sent me to a neurologist and I was finally diagnosed in Aug.98. I went down hill so fast and so badly all of the many Drs.I saw told me that I had the worst case they'd seen. I could not easily dress or feed myself. My hands could not hold a pen let alone silverware. My parents had power of attorney for me in order to pay my
bills. My speech became affected and no one but my dear mom could understand me. Well, God found me the best neurologist, who is one of the original Drs. to come up with a treatment called plasmapheresis to treat MS (or blood transfer kind of similar to dialysis, I am told). After 2 yrs in a wheelchair, I began treatment in 2000. Not only am I walking again, I can even dance! And more to my story previous to my MS diagnosis. Back in 1987 I was hit as a pedestrian by a car, crossing the street. I was told then that drs. weren't sure if I would make it or not. My poor parents. (I can imagine how I would feel if it were one of my kids.) My left leg suffered a broken femur (thigh bone). Imagine a glass dropped on the floor and shattered. That is how my leg was described. The femur was shattered. I was told I would never walk again! God who knows all things, knew I would need to get that leg working again because later on MS would take out my entire right side. Bone
grafting was done not once but twice. They took bone from my hip and then later from my other hip to make sure enough bone was growing back. I will tell you it was the most terribly painful experience you can ever possibly imagine. Well the happy ending to my tedious story is that ladies at my church call me their "miracle girl" and I believe I am a miracle too. teehee I am quite literally a "walking miracle". I danced at my oldest son's wedding in 2002 and my daughter's in June 2005. God willing someday I will dance at my youngest son's wedding, even though that may be yrs from now LoL. He has a serious girlfriend who wants to be a pediatrician. So college must be first for them. Of course every patient is different, so keep in mind that treatment is different for everyone. It has been a miracle from God for me! I thank God for giving me my life back! I try to remember to thank HIM daily that I have a normal life back again, walking and talking like anybody else. Of
course, I joke that what is normal? I think I have never been "normal" if that means being average. LoL I think I am special because God has made me special. God has made YOU special. Never forget that!
Hope I haven't bored you with my long story.
May God bless you and keep you!
WELL, HERE GOES "SHERRY'S STORY" OF BEING DIAGNOSED AND DEALING WITH MS. THE SUMMER OF 1998, I EXPERIENCED AN OCCASIONAL URGENCY TO URINATE. I LOVE TO CAMP. WE PURCHASED A USED CAMPER AND WENT DOWN TO OUR NEARBY CAMPGROUND TO TRY IT OUT. I WOKE UP ABOUT 10 DIFFERENT TIMES THAT NIGHT TO WANDER OVER TO THE OUTDOOR TOILET. THOUGH THE SECURITY LIGHTS WERE ON, IT WAS A COUNTY PARK IN THE MIDDLE OF THE NIGHT AND I AM NOT A BRAVE PERSON! THE NEXT FEW DAYS, I NOTICED AN ODD TINGLING IN MY RIGHT LEG THAT WOULD COME AND GO WITH NO RHYME OR REASON. I BLAMED THAT ON THE FACT THAT I WAS JUST OUT OF SHAPE AND NEEDED MORE EXERCISE. THEN, IN NOVEMBER, 1998, MY HUSBAND AND I LOST A VERY DEAR FRIEND TO A HEART ATTACK AT AGE 40. DURING THAT TRAGIC EPISODE, MY BLOOD PRESSURE ELEVATED TO A DANGEROUS LEVEL. I WENT TO A DOCTOR AND HE IMMEDIATELY PUT ME ON BLOOD PRESSURE MEDICINE. THAT BOTHERED ME BADLY AS I WAS THINKING, "I'M 33 YEARS OLD AND ON BP MEDICINE!" I ALSO MENTIONED TO THE DOC THAT I HAD HAD A STRANGE TINGLING IN MY RIGHT LEG. HE SAID THAT I MIGHT WANT TO SEE A NEUROLOGIST ABOUT THAT IN THE FUTURE. HE SAID, "DO I THINK YOU HAVE MS? NO, YOUR STRENGTH, SPEECH AND VISION ARE ALL NORMAL." SO, I TOOK MY FIRST BP PILL ON FRIDAY EVENING, AND THAT SUNDAY EVENING, MY DAUGHTER CAME TO MY BEDSIDE TO TELL ME SOMETHING, BUT WHEN I WENT TO ANSWER HER, I NOTICED MY ENTIRE RIGHT SIDE WAS NUMB AND MY SPEECH WAS AS IF I HAD A MOUTHFUL OF MARBLES (SLURRED SPEECH). THIS ONLY LASTED FOR A FEW MINUTES AND THEN THINGS SEEMED TO GO BACK TO "NORMAL". I CALLED THAT DOC BACK AND SAID THAT I MUST BE HAVING A REACTION TO THAT MEDICINE. HE SAID, "NO, SHERRY, YOU NEED TO SEE A NEUROLOGIST A.S.A.P. SO, ON CHRISTMAS EVE MORNING 12-24-98, I HAD AN M.R.I. OF THE BRAIN. THE NEUROLOGIST WENT ON CHRISTMAS VACATION AND WOULD NOT RETURN UNTIL 1-14-98. OF COURSE, WE WERE AT HIS OFFICE PROMPTLY ON THE 14TH. I ANXIOUSLY STARTED IN WITH MY QUESTIONS AS THEY HAD TESTED ME FOR LYME DISEASE, CANCER, A BRAIN TUMOR, MS, OR JUST PLAIN NERVES. HE TRIED CALMING ME DOWN AND SAID THAT THERE WERE "NUMEROUS" LESIONS ON MY BRAIN. HE SAID THIS WAS CONSISTENT WITH THE DX OF MS. I SAID, " YOU MEAN THAT DISEASE THAT JERRY LEWIS HAS TELETHONS FOR?" HE SAID, NO THAT IS MUSCULAR DYSTROPHY. WE NEED TO DO A SPINAL TAP TODAY AS WE NEED TWO TESTS TO CONFIRM MS. I BAWLED. SINCE I KNEW NOTHING ABOUT MS, I ASKED IF IT WAS FATAL. HE HO HUMMED AROUND, HANDED ME SOME BROCHURES AND I GOT MAD AND DEMANDED THAT HE TELL ME IF MS IS FATAL SINCE I HAVE 2 YOUNG CHILDREN AT HOME AND A HUSBAND. THE NEURO. FINALLY SAID, "NO, IT IS NOT FATAL." DOWN WE WENT TO RADIOLOGY TO PERFORM THE SPINAL TAP. I HAD HEARD SEVERAL HORROR STORIES ABOUT SPINAL TAPS AND THE SEVERE PAIN INVOLVED WITH THEM. I SOBBED THE ENTIRE TIME, BUT ACTUALLY, I FOUND THE PROCEDURE VIRTUALLY PAINLESS. THEY STRESSED THAT I NEEDED TO DRINK A LOT OF LIQUIDS AND REMAIN AS STILL AS POSSIBLE. THEY WOULD NOT EVEN ALLOW ME TO DRESS MYSELF AND INSISTED ON DOING SO, EVEN PUTTING ON MY BRA! I WENT HOME, SAT IN A RECLINER AND SHARED MY EXPERIENCE OF THE DAY WITH MY KIDS, BRANDON-13 AND JENNA-9.
I WAS WORKING AS A BANK TELLER AT THE TIME AND WAS TO ATTEND THE CHRISTMAS PARTY THAT SATURDAY NIGHT. I HAD ORDERED MY FAVORITE, CHICKEN CORDON BLEU, BUT AFTER THE WAITRESS SET IT DOWN IN FRONT OF ME, I TOOK ONE BITE AND TUGGED ON MY HUSBAND'S SHIRT SLEEVE AND SAID, "CARL, WE NEED TO GO HOME I'M FEELING SICK." WE GOT HOME AND FOR 3 DAYS STRAIGHT I HAD THE WORST HEADACHE I COULD EVER HAVE IMAGINED WHICH CAUSED ME TO REPEATEDLY THROW UP. I CALLED THE NEURO MONDAY MORNING AND HE ASSURED ME THAT THIS WOULD PASS SHORTLY AND THAT THIS WAS DEFINITELY DUE TO THE SPINAL TAP. (I HAVE MADE A PERSONAL VOW TO MYSELF THAT I WOULD NEVER, EVER HAVE THAT DONE AGAIN!)
I HAD AN APPOINTMENT WITH THE NEURO TO HEAR THE RESULTS OF THE TEST ON 2-5-99. HE SAID, "WITHOUT A DOUBT, YOU HAVE MULTIPLE SCLEROSIS." I SAID, O.K. NOW THAT I KNOW, I AM GOING TO DO ALL THAT I CAN TO BATTLE THIS. MY FIRST EXACERBATION WAS 3 WEEKS AFTER DX, DOUBLE VISION THAT LASTED ABOUT 6 WEEKS AND THEN WENT TO BLURRY VISION FOR A FEW MORE WEEKS. IN JANUARY, 2000, THE NEURO STARTED ME ON AVONEX INJECTION THERAPY. FOR 3 DAYS A WEEK, I FELT AS THOUGH A TRUCK HAD RUN OVER ME. I STILL SEEMED TO HAVE AN "ATTACK" EVERY 6 WEEKS. IN APRIL, 2000, I LEFT A JOB THAT I ENJOYED AS I LOST SELF CONFIDENCE TO DO AN ADEQUATE JOB, AFTER ALL, I WAS HANDLING THOUSANDS OF DOLLARS FOR CUSTOMERS...WHAT IF I MADE A MISTAKE??
THE MS I HAVE IS SPMS (SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS). IN OCTOBER OF 2000, I STOPPED THE AVONEX. I DISCOVERED THAT WAS THE WRONG THING TO DO AS I HAD A MAJOR FLARE UP. SO, THE NEURO STARTED ME ON COPAXONE. THE SLUGGISH SIDE EFFECTS STOPPED, BUT I WAS STILL HAVING AN EXACERBATION EVERY 6 WEEKS OR SO ALONG WITH I.V. STEROIDS. IN 2004, I SWITCHED NEUROLOGISTS AND WAS THEN HE FELT I WOULD DO BETTER IF I TOOK THE REBIF INJECTION THERAPY. I CAN HONESTLY SAY THAT I HAVE NOT HAD AN MS EXACERBATION FOR ALMOST 1.5 YEARS. HOWEVER, I SEEM TO SPEND AT LEAST 1-2 WEEKS IN THE HOSPITAL THE PAST FEW SUMMERS DUE TO KIDNEY STONES! SINCE I HAVE ALMOST NO FEELING FROM MY CHEST DOWN, I DO NOT HAVE THE NORMAL, TYPICAL, PAINFUL SYMPTOMS OF THE STONES. I JUST START VOMITING ENDLESSLY AND SCORING UP A VERY HIGH FEVER. I'VE BEEN TOLD THAT I START TALKING NONSENSE AND HALLUCINATING WHEN MY FEVER GOES TO GETTING THAT HIGH. HMMM...SO THEY SAY! THIS PAST JULY, IN THE MIDDLE OF THE NIGHT, I WAS TRYING TO WAKE UP CARL, WHO IS NORMALLY IN BED AT MY SIDE. I GOT NO ANSWER FROM HIM, SO I GOT LOUDER AND LOUDER CALLING HIS NAME. FINALLY, AN AIDE CAME TO MY ROOM TO ASK WHAT ALL THE YELLING WAS ABOUT. I SAID, "I CAN'T GET HIM AWAKE!!" (WE ARE ABOUT 35 MILES AWAY FROM THAT HOSPITAL AND CARL WAS AT HOME!!) THEN 2 AIDES WERE AT MY BEDSIDE ASKING ME TO SAY MY FULL NAME AND ASKING ME WHO THE CURRENT PRESIDENT OF THE U.S. IS, ETC. I WAS THINKING TO MYSELF, OH YEAH, I FEEL I'M IN SAFE, COMPETENT CARE WHEN THEY DON'T EVEN KNOW WHO OUR CURRENT PRESIDENT IS!!!
I FEEL THAT THE LORD IS WATCHING AND PROTECTING ME AS I CAN HONESTLY SAY THAT I HAVE ENDURED MS FOR ALMOST 7 YEARS WITH NO PAIN. I AM JUST CONFINED TO A WHEELCHAIR AND I HAVE SOME TROUBLES WITH MY COGNITIVE ABILITIES. I CONTINUE TO TRUST IN THE LORD AND KNOW THAT HE WILL HELP ME TO ENDURE THIS TRIAL.
~YOUR FRIEND WITH MS,