Stories

Shelly

My Life Is Just Beginning

Diagnosed at 30

One night in 2011 I was awakened by shaking in my left arm. It scared me so I woke my husband up. After a few hours the tremors were not getting better so he talked me into going to the ER. Where I was given large amounts of Adavan because they thought I was nuts. The ER doctors did numerous test and realized that the meds were not affecting the tremor so they sent me to a "good" neurologist. Upon seeing him I received some meds that made me so sick because he too thought I was crazy. Three months later I went back and he said, "I don't understand, because symptoms don't just come on all of a sudden like this". He diagnosed me with essential tremors. With lots of research and several different meds that didn't work and by this time I had tremors on my entire left side finally he says, "I will try you on carb/levo, but I doubt it will do any good". It helped a lot so I just didn't go back and he kept refilling it for me.

Between early 2011 and late 2012 I had seen a orthopedic doctor for severe pain in my hips, at which point I was told it was because my tailbone sways out, and he sent me to physical therapy. I went back to my primary doctor for gallbladder related problems, severe night sweats, pain in my eyes with blurred and sometimes double vision, blank stare and more so now let me start.... I had an EEG, EKG, CAT Scan, you name it to rule out petite mal seizures, thyroid problems, i was sent to female doctor to rule out early menopause, I had my gall bladder removed which normally causes diarrhea but i ended up severely constipated, I have had a colonoscopy and endoscopy...I was sent to a rheumotologist who diagnosed me with fibromyalgia (which i don't have) and Sjogrens syndrome (which I'm not real sure if I have) and was then referred to an endocrine doctor.

Here it is Jan. 2013, I am telling myself I am not crazy and could someone ever give me a real diagnosis. It didn't matter how good or bad at this point I was just so tired of spending all the money we had seeing doctor after doctor and never getting answers. With all my research I told my husband  that I  think I have YOPD. He read about it and stayed on me till I made an appt with a neuro doctor that specializes in Parkinson's. After searching New Orleans over she is the best thing that has recently came into my life. She listened and read all the documentation I had been doing of symptoms and problems and at the end of that visit Jan. 25, 2013 I had the correct diagnosis of YOPD. I see that endocrine doctor on Feb. 4 and she said see what he says but wait till after he gives you a diagnosis to tell him its the carbadopa/levadopa causing your night sweats. I am still in shock but so thankful for her.

Now when I hunt with my husband and he walks me to the stand he knows that all the times he said hurry up and I said bay I just can't walk that fast, its like my legs don't wanna move that i was honest. To him and his support I will forever be grateful. We have been married for 11 years with two boys 13 & 10, I may be only 30 but its crazy how all the years I said your life don't really begin till your 30's its actually true. My life is just beginning and I'm fortunate enough to have people to help me through it. Never give up on your self and here's to life just beginning. Lots of love from New Orleans, Louisiana

1 Comment

thanks for sharing, my story is similar

nic, Aug 2, 2014

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