Stem cell treatment/MS Beth Hughes

DID you Know ? There is no cure for multiple sclerosis. Treatment typically focuses on speeding recovery from attacks, slowing the progression of the disease and managing MS symptoms. Some people have such mild symptoms that no treatment is necessary. But me on the other hand needs treatment and needs disease progression shots until recently was taking REBIFF and seemed to be in a controlled state with my MS 
BUT  its
NOT WORKING ANYMORE

 ON Monday Night May 21, 2018  I lost the use of my left arm from the shoulder down. This spread into my fingers in my left hand, I also experienced  some strange tingling feeling in my face.   The on call neurologist wanted me to go to the ER, although I was not going to go and get a 100 unnecessary test when I know its MS so I waited till 8:00am and Called Dr. Lattif. He immediately wanted me on Soli-Medrol IV for 5 days.  After my first treatment  Tuesday and finally sleeping I woke up to moving my shoulder, I was a kid at Christmas I text my family I can move my arm. 

Last day of treatment was Saturday, I was extremely tired and just could not get enough sleep. I slept through the weekend and Memorial Day. Tuesday I did not feel better but I had an appointment with Dr. Lattif at  12:30.  Dr. Lattif was not satisfied with y progress and put me back on steroid treatment orally for 4 weeks. MRI's were ordered and Dr.  Lattif stopped us in our tracks when he gave us a number and said I want you to do this, it will reverse your effects of MS and stop the disease progression.  I'm serious you need to do this your MS is active and in five years 2 major attacks isn't good. I want you to do stem Cell therapy;   AND 

WE ARE TAKING A LEAP OF FAITH, this  procedure isn't covered by insurance, its approved in the untied states finally  for MS in California.  StemGenex is the center for treatment and autoimmune Disorders, I have been accepted as a candidate for treatment , I have a Date of needing to arrive  in DEl  Mar California  on July 24th 2018.  The date is Crucial as I'm approaching my 5 year mark treatment; its   best at or before 5 years.  With all the faith I have I'm praying for a will and a way, this would be life changing for my children and my family.

The treatment alone is 19,400  please consider helping Me (Bethany Shaw Hughes ) as I need this treatment to stop my MS progression and reverse the effects I already have so I can continue taking care of my children and providing for my family

 
My Most heartfelt thank you Goes to my Doctor Dr. Abdul Lattif, without you I would be in shambles, and without you I couldn't have gotten where I am today. Today you have given me an opportunity to reach for a cure for MS, and  hopefully help you help others like me. 


MY STORY BEGAN 5 YEARS AGO August 2013

My story began on a normal day I was 29 years old went to work.... I was typing on my computer and all of a sudden my pointer finger wouldn’t click the mouse . I remember thinking wtf is wrong with me. I shook it and I could not make it move I continued on about my day I had work to do, I then had this feeling come in my tongue jaw and lip. I looked at my assistant and said is my mouth doing something weird on one side when I smile. She giggled what are you doing, I said oh I don’t know I’m going to take my lunch break. Went in my car text my assistant told her their was something wrong but don’t worry I’m going to drive myself to the doctors. I showed up at complete family care in Watertown . By this time my right arm had gone numb and my hand had no use my fingers were shutting. The nurse escorted me back and as soon as I saw her I started to sob, I knew something terrible was wrong. They called the ambulance. I called my brother Joshua Shaw Bc my brother would be able to help me and tell mom n dad and not freak them out. Well that didn’t work they were all together. Josh was taking his CDL license and Mom was driving to the hospital . A few test mommy made it to Samaritan the doctor came in mind you I was smiling joking I’ll be fine just give me a beer. The nurses and two doctors rush in don’t you get out of bed and don’t move to much. I said why I was just walking I’m fine . They said Beth you have had a stroke we cannot risk you getting out of bed warning vulgar language ....... I said what he said Mrs.  Hughes you have had a stroke. My response to this new doctor was oh you have got to be fu**ing kidding me.... he said I’m sorry I’m not and my response was. It’s a fu**ing stroke as my mother is yelling Bethany Ann .... the doctor never came back I think I scared the bejesus out of him. And the test began 
I was put through many test including being stuffed in the MRI tube in which might I add is not for the weak! When they look at your brain they encage your head to keep it still and stuff padding in your ears, then ask would you like some music on! NO just get this over with finally after what seemed like eternity but was over an hour they let me out. Before even five minutes was over I began to panic inside tears rolled down my face uncontrollably , I tried to slow my breathing as I was about to scream and I couldn’t pick up or move my head as it was strapped down. And they came this beautiful voice to me. It was my grandmother ! She held me and assured me I would be ok, her voice calmed me and stopped my tears ! I didn’t want her to go away ! I cherished every clank in that damn machine Bc I spent it with my grandmother. Grandma Shaw never let me be alone, she was my strength my dignity and wiped my tears away. I wanted her after my MRI but she left me ! That feeling was the most intense moments of my life from 0-60-0. I have never been so thankful for her visiting me in the worst time in my life. And u know what they stuffed me back in that machine 4 times 4 your reading that right and I never panicked again I made it back to my room by midnight and I was admitted to PCU a step down unit. I was hooked up to heart monitors, IV drips and they but a brace on my hand to separate my fingers from my palm of my hand!!!! Funny story I had to sign a paper the doc put the pen in my closed hand by jamming it in my fiat I signed ever so kdg the doc went to pull the pen and their went the cap and the pen stuck in my hand. I laughed historically like seriously you didn’t know that was going to happen! My mother my little mommy had to pry open my fingers to get the pen out I can still see her grunting to get my hand open! 
I was started on some new medications but needed to wait for the neurologist to explain why and what's going on! Meanwhile the heart doctor came in and informed that I needed a special ultrasound done of my heart . They needed to make sure the backside of my heart was ok so I needed to swallow a camera. The doctor stated don't worry your going to swallow it like a big meat ball ! Who says that but ok! Meanwhile my family gathered in my room waiting for the doctor my kids came it had been my first night away from baby Kendyll whom I was still breastfeeding. What broke my heart is my kids were so scared they wouldn't come to me . We all impatiently waited for doctor latiff, he came finally . It was confirmed their was NO stroke, I was shocked then gulped hard what could it be dr. He pulled up the pictures of my brain and their was a white spot the size of a half dollar coin hitting both halves of my brain ! When I asked what is that! His response was it's one of two things it's a MS Lesion or its a tumor. I said like brain cancer! My husband broke he sobbed and said I can't loose my wife I need her we have kids, my parents were crying I was in utter shock. Dr continued I need to tell you more. You have about 15 old lesions on your brain and brain stem which would confirm its MS . Although I Dr. Latiff has never seen a lesion that big from MS before therefore he cannot rule out that's a tumor . The only way to tell the difference is treat you with meds and if it shrinks from the meds it's a regular ms lesion , if not then we will have to see another doctor. He started me on steroid drip the largest amount anyone can have for 7 days . After one day of the meds my hand started moving, I started walking better and life started looking alittle better. Although my emotional journey just began. It was extremely tough for my family to go through this to see my 6'3' teddy bear husband crumble is not easy to watch. My parents crying in pain Bc they can't help their baby girl is not something I ever wish to witness again. It took a toll, I was in complete shock I just wanted my brother to pick me up in his monster truck and us go mud bogging like we were kids and pretend it was all a dream. But it wasn't . My parents took my kids home and when everyone was sleeping my husband didn't leave the hospital I broke! My husband held me I asked why me, what did I do, I have babies, it can't be cancer, I can't sleep I can't , I can't run away and rob just held me sobbing for about an hour everyday at 3am on the button for my daily breakdown, he held me may not have said much somehow we squeezed in the hospital bed together he held me until it passed then kissed my forehead and said I'll be here for you! One morning I had a conversation with him telling him he needed to leave me Bc this life wasn't going to be fair or good, and I would rather him leave now then later so I can grieve over everything! I thought he was going to slap me! He never left my side for 10 nights I was in the hospital ❤️ I was told that I needed to have a test done for insurance purposes because it's the only thing they really look for when someone is diagnosed with MS. A spinal tap or should I say a drill in your spine from Hell . Supposedly their is a protein in spinal and brain stem fluid that guarantees a MS diagnosis. I didn't know any different so I signed the paperwork. The first doctor tried 4 times to get the 12 inch object in my back to draw fluid off my brain and did not succeed apologized and left the room. 2 hours later the anastegiogest (sp) came in set up and began his job from hell. My husband sat in the chair across from me watching nervously as I clenched my fist tears streamed down my face and I yelled you have to stop it took 3 tries and him jabbing the needle around to draw off the fluid in the mean time he hit the nerve in my leg and it literally almost kicked me in my own face. My husband was in tears watching this doctor crank a needle in my back and just as I was about to break he got the fluid. Now I have been given a complete nerve block spinal for a C-section and a block for natural birth this was nothing like I have ever experienced. Little did I know my test came back negative for this protein and guess what I still had MS. My cousin came to visit me and wished she had come a little sooner so she could have told me not to do it. We cried and hugged and now share orange day together. Apparently MS runs in our family now I'm the second 1st cousin with a diagnosis. So over the next two weeks I struggled with a spinal migraine from this stupid test. This is no average headache I'm telling you your head feels like it's being blown off. Every time you stand that feeling comes back. As long as I laid down I was fine.so what happen was the damn doctor drew off to much of my spinal fluid which goes into the base of our brains and support our c-spine. Mine was empty so I had to options go back to surgery get a blood patch done because I had so many attempts to get the spinal fluid I had the entry holes from the needle open in the spine causing the fluid to slowly leak out . So they would take blood from my arm and insert it in my back to seal the holes . Or drink a Mountain Dew every hour until the headache is gone . I literally thought the doctor was crazy. Not only that I hate Mountain Dew . So my husband and my father went to the store and bought a few 12 packs  and made me guzzle a soda every hour for about 3 days and it went away! MT DEW saved me I don't know what it was but the doctor said the sugar content and caffeine in this soda will take the headache away and seal the holes . IT FRIKEN WORKED I COULDN'T BELIEVE MY EYES !!!!! So friends if you have a headache MTDEW is your friend straight from the neurologist mouth!I had been dreading turning 30 for about 3 years and you might know I spent my 30th in the hospital. But let me tell you what those that I love the most family and a few friends you know who you are made this day fly bye. I didn't even think about being 30, I joke about god must have known I was panicking and gave me something else to think about. This one special person showed up at my hospital door and made tears fall quicker than usual. He is my favorite cousin we have covered several miles every year to party with each other. I believe I may have been drinking something when he showed up at my hospital room and I either choked or spit it out and began to cry! You came to see me, omg thank you so much I love you was about all I could repeat ! This birthday was the best yet! My brother and his girlfriend brought me my favorite lunch Panera bread and I spilled my soup out of my right hand. Why I held it in that hand who knows . But we sure laughed! My parents ,my children, my husband, a few friends, we all crammed in this 12x12 space I can't say the nurses were particularly happy. But for the first time in a week I smiled I didn't care what lisp I had how I walked or what I spilled, I was just thankful for each and everyone Bc I still didn't know what my life was going to bring, laughs, tears and memories were shared I was afraid it was going to be our last time gathering! It really makes you think and talk to people differently when you don't think your going to live! It was the best birthday I had ever had and I don't think we even had cake .

I was released, lights were to bright sounds were strange and every bump made my stomach hurl. But I just didn't feel good enough to enjoy being released from a 10 day stay which I should have been jumping for joy over! It was so good to see my driveway although I was trying to get up my front steps and I could not pick up my right leg enough to go up the stairs. I didn't have the strength to pull I didn't know what to do ! I remember 2 men just taking over one pushing the other lifting my leg. We made it inside my home I flopped down in the recliner and their I slept! Although a problem exist I couldn't get in or out of my house my mom Dad husband and friends did the unthinkable and gathered the next day to build me something I could get in and out of. I begged my dad please don't build me a ramp I'm not an invalent , what about stairs that are like 2 inches apart! He said ok ! Rob gathered a couple friends and my brother was their I think some family came to help and in one day I had a little porch with really cool stairs that spread out over about 8 feet, and made me feel human still . The reason I struggled is I developed slap foot or drop foot syndrome , so my right leg was very heavy almost hard to lift would make me unbalanced and occasionally fall. I would get really mad at my leg and it would be nothing to see me walking a circle around my garage to improve my gait , I would fall cry and get back up and make myself do another lap . I did this several times a day to prove to myself I'm in control. Don't worry my mother was peaking out the kitchen window while rob was waiting on the porch giving me a lecture.

*please remember this is my Story from what I have went thru in 2013. I'm raising awareness spreading knowledge and telling my story during MS awareness month ! So the journey began in the car for 3.25 hours to get to Rochester memorial I was occupied by great people my mom and Dad and my Hubbie. I do not remember speaking the whole way down . I do not remember breathing it was difficult , I had an MRI it was 2 hours they took images of my C-spine spine and brain . Then on to meet Dr Hyland . Dr Hyland was a younger friendly doctor who was on top of her game. I had to walk as fast as I could from a line to another line and I fell into a wall Bc I tripped myself. So much for walking the line. She tested all my weaknesses including my arm so if you turn your arms over palms up and hold them out and close your eyes if one of your arms fall you have a side weakness yup right side weakness hello ! Anyways now for what we have been waiting for she pulls up my images on the computer reads them right in front of us, shows us all her concerns and lesions and confirms that I have MS ... I said so it's just MS no cancer . Yes she flipped back to my big lesion comparing how it's shrank in 2 weeks! I started to sound like a broken record so it's just MS r u sure it's just MS. Yes it's just MS and we need to talk about treatment options it's important we start on them as soon as possible. We talked fir about 30 minutes we choose Rebiff injections 44mcg 3 days per week I said thank you and clenched my paperwork with a huge smile a silent tear ran down my face! I have never felt so grateful in my life to be diagnosed with just MS ❤️I walked out of strong memorial stronger and determined it's just MS