So to the surgeon we go...me Steve , my mom and this new baby growing in my belly... the surgeon proceeded to tell us that I would need to have 1/4 of my breast removed...??? I wanted a second opinion so we went to Magee... they were wonderful but would not due a biopsy until I was in my second trimester...so I went all that time thinking I had cancer in my breast...I was so, very sick with her ...I was in bed all day every day vomiting or dry heaves...and the most horrendous headaches...I was losing weight so they checked me for a molar pregnancy...but the baby was okay.
So, as soon as i was far enough along I went for the biopsy and it was benign, I was 34 years old , they placed a marker sent the resuts to my ob/gyn and that was where the problem started. You see proper procedure for someone with dense breast especially with a found lump that has been marked even without a family history of breat cancer should be diagnosticly mammo and ultrasound yearly... Now I know that 8 years later and full of cancer... I was never told that...I was told I was okay until 40.
In the meantime I filed for and was awarded full Social Security Disability due to the tumor and the headaches...what a godsend not only did me and the kids recieve a monthly check but i would have health insurance again... It was not SSI which is through welfare but it is through Social security...it is like an insurance you pay as you work , you pay into it and if you become unable to work you are awarded the benefits kind of like retiring early.
So, with insurance i was able to get a better doc, who gave me alot of meds to try for the headaches... many of which gave me more problems than cures... But she gave me what at the time I thought was a miracle drug Reglan... it stopped the vomiting with the headaches and allowed me to care for my kids... I took it for 6 years...
About 1 and a half years ago I started having a twitch in my eye...I was working alot on the computer and blamed that but then it became so bad that i thought other people surely would be able to notice it as it was more like a rough pulling of my eyelids... I casually mentioned it to my neuro and she looked alarmed...that day she gave me botox shots in my upper and lower eyelids because she said if it was not treated it would get worse... they were horribly painful.
A couple weeks later i was sitting in toris room playing with her and my arm started jerking oddly like someone had picked it up but it wasn't me... weird I thought... So I mentioned it to Steve... as fate would have it he was watching tv one night and a commercial came on for lawyers taking on Reglan cases for causing movement disorders... he looked it up and called me to the computer and it was what was happening to me.
So I went back to the neuro and questioned her and she said she thought it had nothing to do with it...as i wasn't on the high doses that were known to cause it... But i told her I wanted off anyways.
What happened next was straight out of a horror film...apparently Reglan works on the stomach muscles to make them move food through the stomach fater for people who have stomach emptying issues or nausea from chemo etc... It is supposed to be taken for no more than 12 weeks I was on it for 6 years. I started feeling very shaky and nervous inside ...extremly anxious... then my shoulder started doing this repetetive movement that was not only embarrasing but painful...My back muscles would spasm in a way that they made me jerk forward then back so hard that they tore my spinal muscles...i was in agony and it was never ending..we called the neuro who said it was dystonia and when we asked if we should go to the er she said no they wont know how to treat it.She called me in some heavy duty meds...one for spinal cord injury patients and one for people with parkinsons .I was in bed for well over a month...My neuro had no open appts...so i went undiagnosed thinking I had Ms or worse...Finally the day of my appt came it took Steve and Savannah to bath me and get me ready because i jerked all over the place. We drove to Wash only to be told they had movedd my appt and forgot to call me. and no the dr doesnt have time to see you today. I was devestated...
When i got home out of desperation i called an attorney...who now represents me...he used to be a pharmacist but when he saw what so many drugs were doing to people he became a lawyer. He knew exactly what I had by the descriptions I was telling him and he set me up with a movement disorder specialist ...When Steve drove me to Pittsburgh it was the first time amongst all of the weirdly moving and tourette ridden people that i felt at home in a long time...noone even glanced my way because we were all doing weird crap.My shoulder would jerk and the kid with tourettes across from me would then have to jerk...it was funny in a hideous way...lol I was diagnosed with Tardive Dystonia from the reglan.
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