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M/s

Well, this is my first story I'm posting on EP (just joined today) aaaaand to be completely honest I thought I would start off with something I am very, very familiar with.  About 2 years ago in June, about 3 days before my birthday (I am currently 21), I woke up with my left side, starting from the torso up was completely numb.  At first I thought it could possibly be one of the most hardcore hangovers I have had in my life but I knew something was wrong.  Being the stubborn idiot that I am I waited a few days before going to the hospital.  Now don't get me wrong, I wasn't dragging myself everywhere, the numbing went away partially until the most trouble I had was gripping things with my left hand.  I initially thought it was no big deal, that it was some kind of weird bug/virus that I might have caught.  Well anyways, the next day was worse.  Alot worse.  I woke up with a slur (almost identical to Depp's Capt. Sparrow), and a major lose of balance along with this drowsiness that I jsut couldn't shake.  I knew that this could not be ignored any further and took myself to the local ER.  After 4 hours and alot of steroids I regained feeling in my body and wasn't walk/talking like a drunkard.  I made an appointment to see a neurologist and took about 4 MRI's along with 3 spinal taps and after all this was taken care of I got the news about MS.  I'm perfectly fine now, if you saw me you could never guess I had it.  So the point of this whole thing is that, Im scared.  I know people who know people who have MS but are in a much worse off state.  I know this sounds selfish and almost a little concieted but I find myself to be fairly good looking and a decent personality...I'm terribly afraid of not getting to live my life.  Im afraid that I will end up in a wheelchair by the age of 25 wasting away, living with my parents because I won't be able to take care of myself.  I know I'm going to the worse case scenario but honestly I have no one to talk to about this since all my friends really don't know exactly what MS is.  I have their love and support but I don't have their understanding.  This is why I am asking my fellow EPer's to please share with my their stories and help put my racing mind a little more at ease.

Tiredinsomniac Tiredinsomniac 18-21, M 7 Responses Apr 6, 2010

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I remember at one point asking a Dr about the marijuana and he said he couldnt legally tell me to do it, But to let him know if it helped lol



I havent heard of the new pill- sounds more appealing i agree, shots are a drag and a constant reminder, ya know?



I hate the side effects of the drugs they use to treat MS. Steroids are awful! Try and ride out most flare ups without getting any, I do.



Like I said I was diagnosed like 17 yrs ago and in the beginning Ill admit I did what the neuros said, And i was always on some form of steroid,,, the solumedrol drip is the WORST! Ugh,



I will only use that sort of thing if I cant see or swallow. (which is never since 13 yrs ago)



Otherwise I ride it all out til it goes away.



The more attention you pay to your symtoms the more they are bothersome- you know?



Its a mind set really. All of life is



If you refuse to be negative by cancelling out any negative thought as it enters your mind, your life and health will improve SO much



I totallllllly suggest reading " you can heal your life" by Louise Hay.



Ive had a copy of her book since the beginning and it still works for me



Its an easy read and it teaches you to think positive thoughts and change your life :)



Dont buy into other nay sayers wanting to bring you down, Life is too short-

Also MS is not Incurable that is a crock- they just havent FOUND the cure yet! :) There is a cure somewhere out there! And you are young and Im sure youll see it in your time the way science advances -



As for being a part of a study- I dont like those. I mean the long term effects are unknown and you are young- Id wait and see what happens with it- i refuse to be a guinea pig. Im donating my organs to science when I leave this earth so that is my donation to helping cure this disease.



I can tell you that stress is the worst trigger. Try to stay calm and avoid toxic people and toxic situations and things should go smoothly :) When and if you feel stressed Start to focus on reversing it - this will help you ALOT :)

Hello Maria! I am very happy to hear that you are doing so well! It's a rare find that someone can be so upbeat but that is something i greatly admire. I too was on Copaxone but I stopped w/ the shots...to be honest i do smoke..not medically but pretty much the same and I have spoken to my neurologist about this and suprisingly enough he told me to continue w/ it haha. have you heard about the pill they are in the proccess of making? im trying to get into the survey to test it out but no luck yet. hopefully it will be made mainstream soon enough cuz sticking yourself with a syringe every night starts to get annoying. ;)

Hi Tiredinsomniac :)

I too am a tired insomniac who also happens to have MS. I got DX almost 17 years ago- wow time flies! I have had just about every symptom out there, Spent some time in a wheelchair,used canes etc etc.



Point is... Id work thru the flareups, Always expecting to get better. and I always did. The mind is soo powerful



I had Drs even tell me I would never walk again, And to go into a nursing home.

they were wrong.



I walk, and have volunteered at nursing homes! lol



it does seem like there is always something with this freaky disease. The insomnia sucks, muscle spasms really suck, and I miss riding my bike. Pain is an issue. And im really looking into medical marijuana- Its the safest,most natural of all the drugs they hand out in Neuro offices today. SO eh,,, Im gonna try the natural one first.

Im not on any of the MS drugs. I used to do copaxone shots, but my body rejected it.



The only thing i take is Tylenol for the pain,Klonopin for the anxiety and thats it really.



Dont worry about what "kind" of MS you have. They constantly change. Atleast mine does.



Let me tell you in all honesty- Expect to get better whenever it starts to get active,. and it will leave eventually.



I was your age when i first started with this freaky ride, and I know its hell in the beginning not knowing what the heck it gonna happen form one day to the next. Hang in there, try not to hang around negative people who also have MS. Try to find upbeat postive ones.



When i was recovering from a bout of paralaysis, I started seeing a therapist, It was the best thing I did!



I also got a personal trainer. Also the best thing I have done,



In fact Im ready to get another one



hang in there, you can do this.:)

stay positive and learn as much as you can,

Maria

Annie...I am deeply moved by your story and i am very sorry you had to go through what you did. I can't even imagine or begin to understand what that must be like...unfortunately i still do not know what kind of MS i have since the only attack i have experienced so far wasn't enough to diagnose me with a specific type. I really do not know what to say because i have never been in your situation but know that you really made an impact on how i view MS. i really do not know anyone who has it (personally) so its really nice talking about it to others, especially those who have gone through so much. thank you :)

Hi Tired

I well understand what happened to you and am glad you are doing so well. I also have MS, I have ppms Primary progressive MS. I started having issues about 5 months before I was diagnosed. I had several signs and symptoms and none of my drs could find anything wrong with me. I had already been to a nurologist and primary care dr. They did cat scans and mri's that showed nothing. I had slurred speech, slow speech, my vision was blurred and gray. I had trouble breathing, numbness in my limbs. I finally had no choice but to start using a cane and within a month moved on to using 2 canes. And saw more and more drs over and over and all of them there is nothing in the tests that tell us what is wrong with you. Yet every day I became worse and worse. Well 4 weeks before christmas 2009 I went to get out of bed and couldnt move my legs at all. It was like they had disappeared during the night. My boyfriend called 911 and I was rushed to the emergency room where after 7 hours i was admitted. More tests were run, more mri's cat and bone scans and a spinal tap. All came back negativeSome of the feeling returned in my legs and the drs suggested i have full leg braces and try to use a walker till they could find out what was wrong with me. After 5 days i was sent home with my walker and braces on. But it was very difficult getting around and most of the time i was so exhausted from trying to walk i was in bed lost and alone. Well, while trying to get through christmas on my walker with the constant help of my boyfriend, I collapsed in the kitchen late one evening. He came running to me trying to get me to speak and i couldnt. He again called 911 and i was rushed to the hospital, this time being admitted into ICU. MRI and Brain Scan showed I had suffered a severe stroke on the right side and middle of my brain. When i came out of the coma after 2 weeks I couldnt speak everything was blurred. And I had a tube in my throat was all i knew. A few days later I was told i had a stroke and i was paralyzed on my left side and would never regain the use of my left side. All I could do was blink my eyes and squeeze someones hand. After a few days i kept trying to tell my boyfriend, family and nurses something was wrong. But couldnt, well after a week in bed drs decided they would start allowing me to get out of bed for short periods of time. This is when they found out not only my left side was paralyzed so was my right leg. I was also on oxygen as I was not able to breath properly without it. A specialist was called in that worked with nothing but Stroke, MS and ALS patients. He immediately examined me and order another spinal tap, contrast mri and brain scan. 5 days later he walked in my room and said im sorry you have ppms, all my family could say was what is that. He continued to explain It was a form of ms that progressively got worse, and didnt go into remission. Well that was december 2009, I am now completely confined to a wheelchair. I have lost complete sensation and movement from my neck down, I have not recovered from the stroke at all due to the ms controlling my body. I communicate with a computer that speaks for me and talks back to me it is off a laser I wear on a band on my head. My computer has to speak to me as I have also lost more than 80% of my sight and can only see images and shadows at this time and the drs dont think it will get any better. It is very hard for me to deal but the one i have fears about are my kids. As they dont know what is happening to me and are to young to really understand. I now require 24/7 care and attention and as per my dr last week my health has declined 25% faster in the last month. If they cannot slow the progression of the ms down some it will start affecting me internally as this form of ms does. Im always scared lately and just wish I would go home to God as I cannot take the pain and living like this way, I dont wany my kids to see me this way. Good luck on your remission and contunue to do well.



Annie

ty for the feedback! i know a couple people with diabetes and know how much of a commitment it is to taking care of yourself. the way i see it, we might as well enjoy life while we have our good health and if somethng happens down the line we can deal with it then. I was shut out, depressed, bitter person for the first couple of weeks after finding out the news but i learned pushing people away isn't going to solve anything. Im sure if your diabetes progresses, you will still have all the love and support from your family and friends, just keep that chin up and live your life to the fullest extent, at least that's what im trying to do :)

hello, i dont know MS or realy know of anyone that does. i do know however how you feel. i have had diabetes for 29 years i have been very lucky but i still worry. i have an uncle who has had it only 1yr longer than me and is in bad shape now on dialysis. he was always healthy and did a lot. i worry that i might end up like him and who ever im with will not want me anymore. im lucky that i had a daughter that is now 10 because i have brittle diabetes,im also lucky that im still able to have another baby. ill be going to classes to learn about carb counting in order to get an insulin pump.



just wanted to let you know that if you need to write anything ill listen. you are still young and they are comming up with all kinds of stuff now .