Beyond The Limits of Myasthenia Gravis!

Name:

Kimberley Williams

State:

Country:

United Kingdom

Website:

kim_2k8@hotmail.co.uk

Title:

My Story :(

Date:

08/23/2009

Story

Hi people.I have myesthina Gravis.I will start from the start. I am from Cumbria now originally from Sunderland. I move around alot and haev been to many different schools. Most of the schools i went to i ran in cross counrty races for as i was a very good runner. I have got lots of medals every year at school i came first in all sports day events. I loved sports!. I moved to Carlisle and started a new school as my parents got married and wanted a fresh start. One day i was doing the long jump and when i ran i collapsed i tryed to get myself up but could not my body felt so heavy it was really scary, 5mins later i went to run again and then when i went to lift my legs up i cudnt even lift them up and i fell. I stoped my sports and went to the doctors but my doctor just said come back in two weeks and make a note of every time you collapse or feel weird, i had a sense that he didnt believe me as i was only 15 at the time. One day i was putting my makeup on for school and noticed that one eye was bigger than the other and then i got all emotional and started crying and my mouth dropped and i felt as if i could not speak and was slerring my words and ended up on the floor crying for help as i could not lift my arms up. I was so scared. So my mother took me back to the doctors and demaned to see a different doctor!. A young male doctor had just started and had just finished university, he walked in the room and took one look at me and said I HOPE THIS IS NOT WHAT I THINK IT IS BUT PREPARE YOURSELF AS IT MIGHT BE MYESTHINA GRAVIS. He seemed so serious and me and my mum didnt know what it was so we didnt think it was as bad as what it was we just expected it to go away for good in a week or two He refferd me to the hospital and my hospital did not have a clue what they were doing so they sent me to some specialists in newcastle for lots of tests to see if i had myesthina gravis.In the mean time my myesthina got worse and worse.One day i went to get on the bus and fell back lucky two of my friends were behind me and caught me.I was sleeping in school collapsing everywere i was totally no good.I could not eat solids no more, I had no notice before i needed the toliet so that just came out my muscles could not stop it.My fingers would not move when i wanted them to. I was soooooooooooo tired all the time and excausted and just wanted to sleep and the double vision was awfull.I felt so out of control it was horrible and so scary. When i got transerred to newcastle the did a electron test on me which was a machine with wire coming out and clips that attached to my fingers and there was a graph on the screen showing my muscle and the line of the graph went down after 5mins and thats when i knew i had MG i made my mum get the test done aswell and you could tell because my mums line went up and her muscles were really strong. I spent a year going in and out of hospital getting my medication put up and down i was so ill i was in a wheel chair.I couldnt believe i could not do sports and all this was happening in my importantest time of school years my GCSE were coming up. One spercific morning a doctor came around and said to me that i might have to get my thymus gland removed as they thought that might be sending out the rong signals and that might of been the cause of me being so ill so quickly and this proceedure will be taken out by open heart surgery. I agreed aslong as i would get better soon. There was people on the waiting list to have this operation for years but because i was so ill they had to move me to the top of the list unless it would of got critical and it would of ended bad :(. I finally got bucked in i was so scared and all my family and friends were behind me you should of seen my room it was full of cards and presants also my school had rang and said that i do not have to do course work because of my illness etc and that when i do my exams they would send a letter off explaining about my illness and it would not effect my grades so i was really happy about that the only thing that i was scared about was having a big scare down my chest. I went in to the operating theatre and kept a brave face on for my mother and when she walked away i burst into tears and i heard my mother aswell. I was so scared, 15 and having open heart surgery all alone, they were giving me stuff to put me to sleep and i kept on sitting up and crying and crying sayin no no im scared wait abit but then before i new it i was asleep and woke up with 4 pillows behind me and in pain!!!!!!!!! I had had my surgery which took long than expected because my thymus gland was bigger than they expected so they were very pleased i had the operation when i did. After my operation i started getting home tutored as my myesthina was still not stable and i became really embarressed and shy and nervbous around people thinking they were looking at me because of my eye which is really unusual as i was always a very uncaring bubbly person who never shut up haha.but now i became a very shy depressed person who stoppped going out with my friends etc...2weeks before my exams i got a phone call saying kimberley were is your course work my parents went crazy as they had been told i did not have to do any! as i was too ill anyways but we came to an arrangment of me doing coursework for one subject.because i was ill i was only alloud to do 4 subject obviously i had to pick english maths and science but i had the last choice to make myself out of art,business studies,health and social care,IT,hiostory,geography and many more, I picked business studies as i always said i wanted to be my own boss one day. I still found it unfair as students had a long time to do there course work and i had 2weeks but i did it in two weks and was proud of what i did.I did my exams in a different room from others as i was in a wheel chair and was way shy at this point now. I got D,s in maths and english and scienece i now i could of done better if i did course work or even if i was not ill and as for business studies i got a C which i was pleased with as i did some coursework.I got better in the summer holidays and started to get use to the idea of my illness and how to control it and new what to do and not to do and my doctor started reducing my medication! i was a size 6 and because i was on steriods i went up to a size 16 ! i loved it thow my craving for food was great as i started liking things i didnt before, I started playing with people that i would not mix with before i found that my personality changed and view about things!. I new i did not do as well as i expected so i went on to college but i did not have the confidence to do beauty anymore and didnt think i was up for it quite yet to do business so i did catering for 2 years and got all my nvq,s 1 and 2 and hospitality and party and passiters qualifications and every month i became alot better then at the end of my 2nd year of catering i got down to a size 12 and started to get my confidence back and though hmmmm im ready so i put in for a business/administration course which i also did a diploma in clait plus and all my key skills which is equivalent to above c,s in english and maths and my word processing certificates,audio transcription,mail merge,document presentaion all that kind of stuff and i even did work placement at my old high school and i was a receptionist it was really good to see my teachers again. I am now off my medication totally as i weened myself of it but when i feel a tiny bit weird or weak i take half and it sorts it out i now control my myesthina gravis and i am so pleased and proud i am now 18 due to be 19 next week which me and my friends are going out fancey dress :) which i cant wait and i have just moved in to a new house with my fiancee who is a star ! he spoils me too much but is so understanding and i have a supportive family. I have my ups and downs but i have the support behind me to do well in life. I just am so happy that i went to college and achieved what i did as i new i was capable to do better than what i did at school, i beat my myesthina it was not goling to pull me down! I still have it of course bt so far so good i have not collapsed or felt weak in months and months i am so happy now.I just hoep it does not come back in the future when i decided to have children.I now work for carlisle city council i am a payroll/HR clerk and the money is polling in :) well done me.well thank you folks for reading my story it feels good to write about it as i have not spoke about it in a while and not like this. xx

Date: 01/24/06
Name: Jen
Home: Hampshire, England
Email:
Website:
Title: Double Vision

This Story was originally enter in our Guestbook

Thank you so much for sharing your story and your theories of possible causes for MG. I read your book a few weeks ago and, I have to add, I stayed up most of the night because I had to read to the end! I felt so emotional when I had finished - you touched many chords. It proved a turning point for me so I had to return to your site to thank you and to tell you that the double vision I have had since last May is, I would say, 90% better. I am lucky that I have only had double vision but it has been a long road to health because I have done it without recourse to Mestinon or steroids. I first had double vision in 1994 which baffled the experts and righted itself after 4 months. I then had perfect sight until 2003 when I had double vision again (again undiagnosed). I thought sleep was the answer - I had just been overdoing things and, yes, it went away in just 4 weeks. So in May 2005 I didn't panic, I just concentrated on relaxing and sleeping but nothing I did seemed to help and it became clear I was going to have to push for a diagnosis. With the diagnosis came short-lived relief when it began to dawn on me that my body meant business this time and if I didn't want MG to affect more than my eyes I needed to do more than just address obvious health issues like better diet, exercise and more sleep. When I read your book, I really related to your theory that certain personality types may be susceptible to MG, especially ones having a "strong sense of duty". I realized how much I had taken on caring for an elderly mother (she lives not far away in her own flat but I have taken on more and more responsibility for her over the last few years.) I have now organized qualified people to share that caring with me (a huge relief!) and this means I can now spend quality time with her and we can enjoy each other's company instead of me running about coping with crises all the time. I also realized I was ignoring my naturally strong creative needs, never getting around to doing those things I enjoy and which I feel are my special gifts. I have enrolled in a life drawing class and, after overcoming a fear that I would not be able to draw as I once could, I have found that as I immersed myself in concentration I forgot about my eyes and they have improved measurably with every class. I also really related to your camping trips on your own - I had said to my husband right back in May that there was a strong feeling inside me that I needed to find a small cottage on a deserted island in which to spend time on my own before I could heal myself. There's not much wilderness here in Southern England (!) but I did start up Yoga and this has given me the tools with which to meditate and relax. I can now see a time coming in the very near future when I will be able to see consistently and all day, and I will endeavor to take forward the lessons I have learned into a healthy drug-free future. Thank you so much for your help and inspiration. Kindest regards, Jen (from Hampshire, England)

Date: 09/06/04
Name: Donald Ewers
Home: San Antonio, TX
Email:
Website:
Title: A Parallel

This Story was originally enter in our Guestbook

What an incredible story but definitely not "unbelievable" incredible. It so closely parallels my own life story, it is quite remarkable. I just came across the book last night and couldn't go to bed until I had read it all. I was in the Army, 1973, in Texas no less, at Brooke Army Medical Center, Ft Sam Houston here in San Antonio. The entire story would take at least another 80 pages -- probably more. I was first diagnosed with late onset acid maltase deficiency, a diagnosis that has been well confirmed. It has very similar symptoms to MG. I was medically retired at 100% in 1974. This past March people began to ask me what was wrong with my eye. "I don't know. What's wrong with my eye?" I would respond. They would say, "It just doesn't look right." After a few days of this, I saw my primary care physician who got on the phone to my neurologist almost immediately when he saw me. My neurologist had me immediately come to his office and it is not too much of an exaggeration to say he almost had a panic attack on the spot. My eyelid was drooping to the point I could barely open it by then and it didn't take very long to confirm I also have MG. I have precisely the personality type described in this book and, having read it, now it doesn't surprise me that I have MG. I learned over a 30+ year period how to push my muscles way beyond the norm thanks to the acid maltase deficiency. And the amazing thing is that I have already been using many of the techniques -- meditation, rebound -- to deal with the AMD. One other coincidence, I teach photography (was never patient enough for painting) and am working on a series of books on the South Texas hill and brush country that began while hiking in several Texas State Nature Areas. It is going to take me a few weeks to sort through everything that is racing through my mind right now. Thanks for making this book available on the web. I will be in touch by email soon. Donald Ewers, San Antonio, TX

Date: 06/15/04
Name: Deborah Lynn
Home: ATLANTA GA
Email:
Website:
Title: Same as my Husband

This Story was originally enter in our Guestbook

Dear Sir, I have just finished reading your publication. I can't tell you how much I enjoyed it. I read it in just a few hours. I was so grateful to have a man, similar to my husband give such a detailed experience about dealing with such a life changing illness. My husband, a Peruvian, whose father was a Chief Engineer for the Marshall Marines in Peru followed his fathers example in ambitiously moving to the United States more than 25 years ago and carving out a life for himself with no help from anyone. We now have 5 children and 2 grandchildren. He has two months ago been diagnosed with Myasthenia Gravis. His work is Running a Company single handedly, Construction. Commercial and Remodeling. Since his diagnosis he has been working as if it is his last chance to ever draw money....Just as you said that you did the first year of your diagnosis. So far he only has his eyes and neck effected by the illness although at times he chokes easily over water, and once on food at a restaurant... I cant tell you how much it has meant to me to find your book to understand him. We actually have the opportunity to sell our home and build on some land in Costa Rica and let my husband draw disability. I have decided that is the right thing to do to simplify and allow my husband to have time to heal and put into practice the suggestions that you have made. They make so much sense to me. I am especially fond of the meditation idea, and its connection to a faith in our Creator, as we are a very Religiously devoted family," Jehovah's Witnesses." Meditation on Spiritual things and especially God's Word the Bible is part of our Dailey routine. My husband has given us many years of hard work and comfort in making a good living for us and I think that now in his time of need it is only right that we put him first for a change. Your beautifully written book has been a great help to me. I cannot emphasize that enough. My husband really is sure that he is not going to get any worse. I am not sure. Besides his being a determined person as you describe the type that is effected. His dream was to get out from under the extreme pressure of his hard work and Moving to Costa Rica and having a simple life and teaching our children a better way to live. We did this and my middle child was raped and we returned to the States. I'm sure he had to have covered his feelings and suppressed this , having a deteriorating effect on his immune system. He returned to have the same stress and has had sleep apnea for 15 years. He also gained weight up to 400 pounds at the time of his diagnosis of mg. Since then he has been on a diet and lost about 50 pounds. He still works hard on this. So my point is you can see that he fits the profile as you have described. I am sure I will continue to read this book over and over. Thank you so much for your eloquently written book that will help me help my husband of 26 years, he is only 53 to cope with this disability. P.S. did you ever resolve the fear of the flying experience... Truly I am grateful, Deborah Lynn , ATLANTA GA.