Your Stories!

This page is dedicated to all those of you with stories of your own to tell. All stories here have been submitted by readers of my blog who also suffer with Ehlers-Danlos Syndrome and/or Gastroparesis. 


Hopefully we will collect enough stories to demonstrate the wide variety of symptoms experienced by so many. Feel free to e-mail me your story at: helpmeminx@yahoo.co.uk


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Margarets story: 
Gastroparesis:



I was diagnosed with GP about 4 years ago. Shortly after trying all the different meds with no help just bad side effects, especially the reglan (!), I was sent to a surgeon for a pacer. Now he keeps telling me that it's only meant to stop the vomiting, which I have never gotten, so why did he put it in then? I go for adjustments and have it checked every few months and always says well it's not meant to control the nausea just the vomiting. Okay, so I'm stuck with this machine that won't allow me to get MRI's if needed because you guys decided to experiment? Is that what it is?
Been in and out of hospital, as we all have, had a feeding tube for 5 months and after being able to maintain and actually put on a few pounds that was removed. Now I'm back to reaching the point where they will put the jtube back.
I also have chronic pain in the left side that no test has been able to locate a cause for. Pain Doc wants me to try an implant to try and control the pain to get me off the meds so maybe my tummy will work better. But, of course, insurance denied the catscans of the spine as medically unnecessary. Once I get feeling better, I've got to go to all the docs I've seen and get my records to file a grievance to get the scans done. Then probably have to fight to get the implant trial.
While this was going on, GP doc wants to do endoscopy with botox injection, denied. So my local gi said it can be done here instead of Philly so he filed to get it done...nothing yet. Figure it will once again be denied. So, day by day, or minute by minute, my life can go from smiling and able to do something to bent over in severe pain or nausea so bad you can't see straight!!
Have a mobility scooter borrowed from someone and flipped it the other day. Nice bruising!!! Very colorful. Reminds me of a piece of stained glass I once bought to make something out of. Need a new one, a four wheel Osprey from Scooter Store!! But not in the budget. I splurged and ordered me a pair of pants that I hope will stay up and not fall off as I walk!!! Scooter, not going to happen no matter how much I hope. Even if I did get it, then I'd need a hook up for the back of my car to get it anywhere other than local.
Just like GP, if it's not one thing, it's another. Mostly medical bills right now with hospital stays and ED visits.
I do get a small amount from disability. Not very much as most of the time I was a stay at home mom. Not that I'll ever regret that!
Learning to take things as they come, though I do have melt downs and cry like there's no tomorrow. I try to talk to others who are dealing with problems hoping that perhaps by talking with them, my problems will move to the rear and let me help someone else for a change.
I do very little housework anymore, the pain gets in the way, as does the weakness.
My poor hubby works full time, does housework, laundry, walks the dogs when he has a chance, bathes them, etc. While I feel guilty about letting him do it all. Guilt is a big part of my life.
So, this is my life to this point. I am no longer the one who people can rely on to get them to doctors or shopping or visiting, instead it's me hoping someone may help me. Not too much help coming my way from family as they are all so busy, one really, really good friend even took me to ED and sat there until hubby got there.
Physically and mentally drained, not to mention monetarily tight.
But, I am still here so there is still hope. I try to hang on to that.



Thank you so much for sharing your story Margaret! I, and many others appreciate you sharing your experiences. So much of what you say is true for all of us and it really shouldn't be like that. Maybe one day things will change and that is what drives us all to fight for another day. Much respect xxx

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Sharons Story: 
EDS:


Hi! I'm a 48 year old Mom of three residing in Indiana. I have had health problems since birth. I am told I didn't start walking until I was over two. I was adopted and premature, so they blamed some of my problems on those things. I found a note from my pediatrician saying I had low muscle tone and possibly cerebral palsy. I was also told I had uncoordinated muscles (maybe I was just a klutz). I've always been double jointed. My shoulders poped out of place all of the time when I was a child. About five or six years ago things really came to a head. After I had a virus, I became very sick. I had several auto immune tests that were positive, but not enough for a diagnosis. I was tested repeatedly for MS because I had numbness and tingling. I had quite a bit of pain too. A few years ago I started having trouble using my arms when I was doing anything repetitive. I became worn out and short of breath whenever I exerted myself. I was finally diagnosed clinically with Myasthenia Gravis last fall. The MG medication seems to be helping me. A few months ago I developed swelling in my knees and ankles. Xrays showed I had OA in my knees. My ankles are very weak and I sprain them several times a year. Right now, I'm trying to decide if I want to be tested for EDS. My rheumatologist told me I had hypermobility syndrome, but he didn't offer any treatment or information. He's no longer my doctor. I'm particularly interested in finding a good doctor here in the USA. I've been dismissed by so many doctors over the years and I just don't know if I can deal with that again. Thanks for listening. Sharon


Thank you Sharon for being the first brave person to stand up and have your say! Hopefully you will help to inspire others to step up and be counted! xxxMinxxxx


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Dawns Story: 
EDS:


I'm currently living with EDS. Undiagnosed all of my life, but struggling until I was eventually diagnosed as type 3 in December. Please help to publicise my run (silly silly me!!) to help raise funds for the support charity. It's a great cause and brilliant site for stories, information and help. I couldn't walk until I was 4 - doctors said I was slow. I couldn't do PE at school - doctors said I was lazy. I couldn't climb stairs at 17 - doctors said I was fat and lazy... When taking 8-12 tramadol a day and using crutches (prescribed, although Drs were 'sure' that there was nothing wrong with me) I asked to see an Ehlers Danlos specialist after meeting a very cool lady with my symptoms and a diagnosis. Diagnosed in December, living a relatively normal life now. Check out www.justgiving.com/rundawnierun and www.ehlers-danlos.org. Thanks, Dawnie. X


Thanks Dawnie, It's really nice to hear that you are doing well, Im sure many EDS patients have had similar experiences with Drs! Good Luck with the run, we are all behind you!!! xxxMinxxx 


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Emma's Story: 
Gastroparesis:


I'm not sure what illness i have, i've been ill for the last 9 months and have not been able to keep any food down in this time. It started of with terrible abdonimnal pains and passing out which eventually stopped and now i just can't eat any food. My BMI has dropped to 15 and i have lost nearly half of my body weight since this began. Wondered if anyone had been through a similar thing and what was wrong with them as i can't go on like this much longer. Am meant to be starting university in September :( I've been in and out of hopsital and had countless amount of tests but no-one can seem to figure out what is wrong with me. They are now talking about it maybe being a functional disorder as an ED has also been ruled out. Having to go back into hospital soon to begin the reefeeding proccess as i'm a dangerously low weight and no food will stay down at all.


Hi Emma, I'm so sorry you are having such a tough time at the moment. It sounds like you are in exactly the same situation as I have been facing for the last 14 months. I would really like to help you, we have so much in common and I am sure I can point you in the right direction as far as the best consultants go! Please please email me at: helpmeminx@yahoo.co.uk and I'm sure I can offer some good advice. My diagnosis was also that it was a "functional" problem but that didn't get me very far in terms of treatment until I found the right Dr. I'm sure you have been left feeling like this whole thing is somehow your fault and only you can fix it, but you have to stay strong and fight for the tests you deserve to have in order to get your life back on track as quickly as possible. Don't take no for an answer!


Hugs
Minx


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Anon: 
Gastroparesis:


Your story could easily be my daughter's story. Our journey began about 8 years ago. She is now twenty years old. Pain, nausea, and vomiting are now part of her daily life. Her weight varies from 81 pounds to a low of 68 pounds. We have been to doctors, specialists, holistic doctors,hospitals in three states, and even a faith healer (sorry, I was desperate). So many tests & exposure to radiation; botox injections twice which worked for about two months, three feeding tubes,operations,so many vitamins and supplements. And all this makes her feel "just a little bit better." She attends the local university & has dreamed of becoming a doctor since she was 2 years old. She has a grade point average of 4.0 and she takes some heavy science courses. My daughter has so many plans but gastroparesis has other plans. She might quit college after this semester. I would give my life for her to be well. She has missed out on so much already. But she still wakes up with a smile on her beautiful face everday and tries to make the best of it. She is amazing.

3 comments:

  1. I am a 46 year old female and I was diagnosed with GP last week, two weeks after having my gall bladder removed. It amazes me how much I have in common with you and other . I vomit and am nauseous 24/7. Worse in afternoons. Reglan did not work for me. Have ordered Domperidone but waiting the 3 weeks to get from Canada. For my nausea right now, I am taking Benadryl and Phenergran. Otherwise, right now I am trying to address this through diet. I was very hopeful last week that diet and nutrient management would work! It's not so much!Found Cream of Rice today and that has been better than any 5 star cuisine has every been for me. One daughter is very angry with me, and the youngest actually went to the grocery store on her own to buy me different possibly food options. Two ends of the spectrum there!!!
    I am overwhelmed. My career seems like it is at an end, but at a minimum is about to be severely impacted and limited. Thanks goodness for my husband who is the best caregive a woman could hever want! I am blessed.
    Hard candy has also helped get me some calories that I might now otherwise be able to keep down. That seems to help me from time to time even with nausea. Not sure how that works.
    I am in pain frequently, with a sharp pain that alternates between the upper right, upper left or lower right of my abdomen. I have no idea what to take for the pain. My dr won't let me take advil, motrin, etc.
    My best practical idea since this whole thing started has been carrying these plastic grocery bags around. That way I can throw up in public in something that is not completely germ infested. it is easier because you can tie it up and throw it away, versus continually cleaning out bucket/trashcan.
    I need other practical ideas too for things I am certain I haven't thought of yet.

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  2. Please somebody contact me. I've been diagnosed with EDS but I think I may have Myasthenia Gravis just like my grandmother did.... I am in pain throughout the day due to the EDS, which is a known fact that I have this pretty bad.
    Here's the issue though, I now have double vision and this last year I have been having grand mal seizures, mostly while sleeping just like my grandmother had. My MG symptoms are these seizures, muscle fatigue, and general fatigue too. In fact I typically stay unconscious after my grand mal seizure for upwards of 10 days straight; due to the extreme fatigue! My double vision is always markedly worse toward the end of the day, everyday. Eye patches do help. I don't hear about seizures affecting MG patients though, like they did with my grandma. Nobody in my family has these seizures except for her, and like me she never had a single seizure until she was in her 30's. I have neurapathy pains in my legs and arms while sleeping, and my seizures seem to happen more likely when I am exhausted, but mostly while I am sleeping.
    Does this sound familiar to anyone with MG? I haven't read that MG is inherited but my dad has already been down this road, like when he was was taking care of his mother, and he remembers these symptoms clearly, as he would of course.
    I'm just curious about what anyone thinks.....I am really tired, adderall does seem to help with energy lapses.

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  3. Hello Beth x

    I'm afraid I don't know very much about Myasthenia Gravis. If you take a look at the links on the right hand side of my page you will see a link named "A Dear Fiend". It will take you to my friends site and she lives with EDS, GP and MG! She has lots of useful information on there and I'm sure she would answer some of your questions honey!

    I hope you get some answers soon honey xxx

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