my ms story

[amurray1]

Since i was 13 I had crazy eye problem.Sometimes they were so painful that I couldn't go to class or move my eye. These eye pains would come out of nowhere and last only for a few days. I just kept living a normal life. I have also been known to fall a lot but never thought anything of it.When I turned 20 the falls came more often. But again I didn't think anything of it. I was in school to be a medical assistance and when I would do blood draws my hands would shake. The remember this was getting harder and harder. Which was never a problem for me I have alway been a Straight A student and been in gifted classes my whole life. I became very depressed and went to netcare which is a free clinic to try and seek help. I was very sad because of other life problems and my grandmother had just found out she had stage 4 cancer. The doctor gave me meds.then the eye pains came back so I went to the hospital. They barely looked at me and told me it was allergies or something else. They prescribed me artificial tears although I was crying at the time. My boyfriend told me everything was going to be okay and took me home. I have also been known to drop things. I broke at least 3 cell phones in a couple of months. At this time I was also working at payless shoe store and I would drop boxes all of the time. Then one day I started to get shocks of pain throughout the whole left side of my body.My body would cramp up, my face would tingle and i would lose control over my body.I told my parents, friends and boss and they all came to the concludsion that it was probley just a pinched nerve At first they would only come when i moved, then they would come even when i didnt move. Then on april 19th 2014 I was driving with my best friend and had one of those shocks of pain. My friend was so scared.She wouldn't let me drive home. She told me to go to the hospital. So i did.They did a C.A.T scan and could not find anything wrong with me. They also drew my blood and saw that my white blood count was very high. They sent me home with steroids and a referral to see a neuro. I went home in tears. The next day i woke up in more pain and having the episodes more often.I called the neuro but they were closed. I was in so much pain that I would drop down and cry. I knew then something was wrong with me i thought i was going crazy.I went to another hospital because i didn't know what to do. They were very mean to me. I told the P.A. what was going on with me and she replied “well what do you want me to do about it” I was so mad i started to cry and yelled back “i don't know maybe use a stethoscope?” She left the room then came back a few minutes after saying that the doctor wanted to admit me into the hospital. They thought that i was having a reaction to the medicine that i had started a month ago for depression. I had also gave them my results from the last hospital.They gave me ativan and benadryl. I became very tired and fell asleep. The next morning they did an MRI on my brain and spine. They showed white matter that was active at this time or active demyelination.
my boyfriend who had left to visit family for the weekend returned and became scared when he didn't know where i was.He called everyone in my family looking for me. I called him and told him what was going on. At the time i didn't know about the white matter known as lesions. We shared a car so he came to the hospital on the bus. From there my family came to the hospital. When everyone was there the neuro came in and told me “ Given that you're only 21 and you have white matter in your brain and spine we came to the conclusion that You have Multiple sclerosis.” At first I was happy, finally I had answers. plus i was very familiar with MS because my step-mother also had it.
I was not crazy! The pain was real. My parents were in denial. The doctor told me that she was 99% sure but she also had to do an EEG and Spinal Tap.I had answers but was still in alot of pain. They told me they didn't want to give me any pain meds because they didn't want to sedate me. I waited 2 days for all of the results to come back. In this time the ER that admitted me came up to visit. He told me how sorry he was for not believing me. Every Night i cried. I couldn't understand why me? I'm only 21. I couldn't believe i had MS. I had to do 5 days of treatment by IV of solu medrol. I layed in bed for 3 of those 5 days and thought why am i here the pain has not stop and they wouldn't let me do anything because i was a fall hazard. I told the neuro that i wanted to go home after the floor attending doctor told me “its not like you're going to die its just MS.”
They set me up with a home nurse that would give me the meds through IV at home. The nurse came and gave me my meds.I couldn't move and when i did i would have muscle spasms. She told me to go back to the hospital. So i want back. Yet again the ER doctor was very mean and said “ You have MS. What do you want me to do about it?’ I started to cry and said “ I didn't come to the ER the first time because I knew i had MS! I came because im in alot of pain!” At this time because i was so emotional I started to have a muscle spasm. The doctor could not move my hands and my heart rate jumped to 170. He saw for himself what was going on. he said “wow you can't be faking this” when the spasm stopped he told me he wanted to give me dilantin a seizure medicine used for Spasms for people with MS that they had put me on when i was in the hospital the day before( which made my hair fall out and made my gums swollen) because my blood said that it was low. That didn't help. He then gave me volume which also didnt work. Then he gave me ativan and dilaudid. He admitted me so that i could get the rest of my treatment at the hospital ( I needed 2 more days). But nothing seem to help. The doctors would not given me any more pain meds or muscle relaxers because they didn't want me to get “addicted” but i think its because im young and black! I didn't know what to do I was in so much pain. I couldn't even get a follow up appointment to see the neuro till june and it was april. For weeks I laid flat in bed.I couldn't go to work and my boyfriend had missed so many days of work. We could no longer pay our bills and had to move out of our apartment. We moved in with my dad whom I did not get along with. Then we moved in with a friend but slept on the living room floor. Then we moved in with my grandmother and mom. At this time i was still in alot of pain and had been back and forth to the hospital( also finding out i had a fast heartbeat all of the time and that I needed to see a heart doctor). It was starting to get very hot outside and i ended up getting into an argument with my grandmother about having the fan on, sleeping a lot(fatigue is the main symptom of MS) and laying in bed. At this time i had only knew I had MS for about 6 weeks and it was getting worst. I started to get MS Hugs on top of all of my other problems.She didn't know that anything could trigger my spasms such as moving also she didn't know that heat can make your symptoms worse. My boyfriend told me he did OSU medical center. I told them i was very depressed and in pain. They convinced me to go to the calming unit. It was very close to the weekend and there wasn't many doctors. Yet again i was still in alot of pain. I couldn't even sleep because i would also have muscle spasms when i slept. I was very emotional the nurse said “ I don't know why you are acting like that I have lupus and I don't act like that.” I was very upset and said i wanted to speak to a doctor. The doctor on call was very mean to me and told me “ I'm not going to give you anything for the pain but would you like something so that you can calm down?” I didn't need to calm down! I was not crazy! the pain was real! I was so mad and said “No thats not going to help me!” he told me he did not have to listen to me and left. I was in so many tears. I wanted to leave but it was night and i had to wait till morning. The next day I told the doctor who admitted me that i wanted to go home. He was very nice and understanding But convinced me to stay 1 more day if he got the neuro to see me. I told him yes. The neuro did not take me serious. He was interrupted multiple times by phone calls. I knew at that time I wanted to go home the nurses were very mean to me the whole time I was there. I slept the rest of the day. Next morning came and i told the doctor i wanted to leave because it was the claiming unit he had to respect my wishes and discharge me.
I was basically homeless. I called my boyfriend up (he didn't know where i had been) and he picked me up from the hospital. I moved in again with my friend and we slept on the floor. The house had no air which made my muscle spasms worst. i couldn't even go upstairs to use the bathroom. I went to the hospital again because i didn't know what to do the admitted me and tried new medicine including pain meds. they didn't work. The same doctor who told me “its just ms” was my doctor again and he discharged me when he came on duty. After the nurse gave me my papers i asked to speak with him. He finally came after an hour of waiting. he told me again “ its just MS” I was so mad i told him that its not just MS in pain and how i hope that nobody in his family gets sick and lots of other things. I told me he doesn't care i'm already discharge and that he doesn't have to listen to me and left the room. My boyfriend comfort me and told me everything was going to be alright. we went home.
the next day it was soo hot in the house and i felt very sick. I could barely walk so my friend told me i could sleep in her daughters bed so i could be close to the bathroom. I was going through all type of emotions. It became night time and i fell asleep. My boyfriend didn't want me to wake up so he went downstairs to watch a movie. He said soon after he heard a loud noise coming from up stairs like something just fell( I sometime fall of the bed when i have muscle spasms) he ran upstairs. My eyes were open but I was not responding to him. He tried everything i was shaking uncontrollably and urinated on myself. my friend came in and he tried lightly slapping me on the face but i was still unresponsive. The called 911. The medic kept saying her eyes are open I dont know whats wrong with her did she take drugs? My boyfriend was so mad i was not that type. He made them take me to the hospital. My boyfriend told me the nurses were acting like “barbies” and he became very mad when one of them said that i smelled bad. he replied thats because its hot and she urinated on herself.He told one of the other nurses(who knew me and about my ms) to kick them out and she did. my eye finally closed and i went into a coma. They put me in the ICU.i don't remember anything but hearing my step mom call me beautiful (even though i looked a mess). They did more MRI’s and EEG’s. They ruled seizer. The neuro told my family that i it could mostly be from the MS seeing as how I didn't have them before.
I remember waking up. I sat up but was not able to see or talk( they had tubes in me). My step mom asked me could i see and i shooked my head no. The nurse then forced me down and then the sedated me. they next day I woke up. I already knew where i was because when you're in a coma you can hear what's going on around you sometimes and also because of the night before when i woke up. They had me strapped to the bed i couldn't move and i could barely see or talk(still had tubes in). I started to cry i wanted to see my mom. I started to move my hand like i had a pen in my hand so that i could write what i wanted to say. The nurses told me to calm down but i wasnt doing anything. i just kept moving my hand like i had a pen in it. one of the nurses said oh you want to write well we're not going to give you anything to write with. I was so scared. But i still kept moving my hand in the same way they told me that if i dont stop they were going to sedate me again. I begun to cry. The nurse then said “oh my god you are such a crybaby” I started crying more and still moved my hand like a pen. I wanted to see my mom. finally they gave me a pen a paper and i wrote to them with bad hand writing( i couldn't see that well or hold a pen in my hand strapped to the bed) that i wanted to see my mom, that i had MS ,muscles spasm that was painful and i didn't want to have one strapped down. The nurse said “we know that and they left out the room” they came back in 10 mins later and took the tube out of my mouth. I told them i wanted my mom. She told me that somebody had already called my family and they are coming.
The whole time i was in the coma nobody bother to wash me up. i smelled so bad and i had stuff stuck in my hair because of the EEG ( they were supposed to get it out as soon as they were done) I looked crazy. I didnt know that my whole family had came from buffalo Ny to see me. I tried to get out of bed but could not feel my legs. I couldn't walk. The doctor came in and i told her about my legs she didn't seem to care. she just started drilling, asking me did i take drugs the night i went into a coma. I told her no she then ask me why did i have opioids in my system. I then became very mad and told her “ the day before i was in a coma i was at the THIS hospital and they are the ones who gave it to me. I don't take drugs! you need to look it up” She left the room. she came back 10 mins later and said that she looked it up and i was right but that doesn't explain the seizer. I told her I don't know what happened but you're the doctor. I also told her that epilepsy runs in my family my sister has it and so does her son. She left the room and the neuro came in she was very nice and told me people with ms sometime have seizures. My boyfriend also told me that the whole time i was in the coma they kept asking him did we “party” the night before or do “drugs”. he kept telling them no and that they should be able to see that i don't do drugs from my blood test and urine test. he also told them that this was probably their fault because i didn't have them before they started to give me dilantin( a seizure medicine) and that everyone know that seizure meds can cause you to have a seizer.
While i was in the hospital i was still and pain. i finally got my sight back but i still couldn't walk. i had aspiration pneumonia because i had swallowed my own vomit when i had the seizer. I also had respiratory failure and i had to get a breathing treatment. I couldn't use the bathroom by myself or shower my mom or boyfriend had to help. And on top of everything else they would only give me aspirin (one 200mg tablet) that i wouldn't take for the pain. they wouldn't give me anything else until my uncle came who had a P.H.D. He told them if they don't give me what i needed that they were being non compliant. After he said that they gave me something stronger and muscle relaxers. They had me do physical therapy but i had no balance. After four days of coughing up stuff pain, and not being able to walk or breath they told me i had to go home. I started to cry because they did nothing for me. they wouldn't give me any referrals or new meds. I asked them can i atleast have a walker at first they told me no because they didn't want me to get too “dependent” on it finally they gave it too me( I have insurance) They then discharged me without my knowing and told me i had to leave. I asked if i could speak to the doctor or nurse practitioner and they told me she doesn't have to talk to me because i'm already discharge. I started to cry this time i didn't come willingly and i still had pneumonia. they did nothing! when i was able to walk fully again i decided that i had to move back to buffalo. Buffalo New York has one of the highest population of people with MS. They know why, Buffalo just does. They have doctors who only deal with people with MS and a better understanding of it.
Since moving I have found out from my MS doctor, that the spasms probably will never go away because I had them for so long and didn't get enough treatment when i found out( the doctors in ohio told me they would go away). the spasm have changed the curve of my back.It a progressive disease that has alot of symtom and that i may need stronger medicine. I was talking Tecfidera (twice a day pill but switching to Tysabri (IV infusion once a month) because i'm not responding to meds and i forget to take Tecfidera everyday. She told me that i'm not only depressed about life and having MS, but MS itself can cause depression.She told me that i shouldn't get pregnant anytime soon because if i'm not off of my meds before i get pregnant then my baby will most likely have special needs. She told me that i could still get pregnant but i should wait till my MS is under control and i would have to plan for it.
everyday is a struggle. Between the depression,fatigue, pain, memory loss, eye sight loss, balance. I also have money problems and can't get much help from the government because “i don't have any kids”. My life has change dramatically in 7 months. I went from a normal african american 21 year old college student to person with a chronic disease. I feel as if MS has aged me mentally and physically. nobody understands they don't know the right words to say or how to help. When people find out about my MS they say oh but you're so young. which makes me sad. I have an ocd problem where everything has to be clean at all times because nobody know how you get MS just that you get it and theres no cure.I can no longer drive a car, walk anywhere or shower by myself. I dont have my own house because i have no money and can't work at this time. My family don't understand that MY MS IS MY MS. It not like anyone elses.My MS journey is not like my step mothers because we are not the same people.I know MS personally and they dont. Im not the same girl MS has changed me whether they like it or not. They don't know how strong I am(sometime i don't know either) for having to deal this at such a young age. They don't understand that I didn't ask for this but was cursed with this disease.

[lyndacarol]

I am so glad you found us, amurray1. I have read your whole story and I am so disappointed that you have found so many uncaring, unfeeling, unhelpful people among the medical "professionals." A person would expect to find compassion there above all.

We members at ThisIsMS are not necessarily medical experts, but I think you will find lots of sympathy here for your situation. We are willing to share our experiences, offer our opinions, and simply listen when needed. Although you have not asked for my opinion, I hope you will accept my thoughts with my good intentions – my heart goes out to you.

You have been diagnosed with MS – the problem with MS is all the symptoms are common to many other conditions as well. Your symptoms (ALL of them) are also consistent with a vitamin B12 deficiency, which a person can develop at any time in life (even 13 years old or younger!). I wonder if ANY doctor has EVER tested you for possible deficiency. If not, I urge you to find a sympathetic GP, and ask him to order blood tests for #1 a B12 test, #2 a folate test, #3 a methylmalonic acid test, and #4 a homocysteine test. (Or, at the very least, do the B12 test – insurance should cover it; if not, it costs about $90.)

Ask for your own copy of every test result.

If you have a B12 deficiency, it is easily and inexpensively treated. Many, if not all, symptoms can usually be reversed.

If a B12 deficiency can be ruled out as a possible cause of your symptoms, there is a long list of other conditions that should be ruled out before an MS diagnosis is made. But, in my opinion, B12 testing is the place to start.

We know you are strong – a person has to be strong to deal with everything you have.

[vesta]

Greetings;

I would agree with lyndacarol that there is a vitamin/mineral deficiency. You might start with high dose of Magnesium (jimmylegs gives nutritional advice here) to deal with severe muscle cramps/spasms which may be the origin of the pain. Also, you must STOP CRYING which is shoving the blood right up into your brain/spine. See if you can get someone to massage your upperback, neck and back thinking of forcing the blood/fluids down towards the heart and also to release muscle spasms.
I'm very sorry you've been put through the wringer, you need to take a deep breathe and try to determine yourself how to deal with the body tension, improve your diet and all the rest, one small step at a time. The sooner you begin, the more likely you can regain what you have lost. You've taken the first step by understanding that the medical neurology complex hasn't been of much help and by seeking alternative help. Best regards, Vesta

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)

See as well - Five CCSVI MS Types (Congenital, Developmental, Aging, Skeletal, or Toxic M.S.)

Taken from MS Cure Enigmas.net