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shineoflight

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Oct 13, 2010
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Learn about ALS
Country
US
State
oregon
City
BEND
Hi all. Im a 35 year old female and wanted to share my story and hopefully get some insight. This is I have to say one of the hardest and scariest roads I have been on. My symptoms all .started about 5 years ago with a twitch starting in my right toe by my pinky toe. it has since progressed up my right leg over the course of a year or so, staying in the bottom portion of my leg then moving over to the left leg. during this time, all it was was spasms and tingling with pain. has time went on it spread to my other toes and into my feet lower calves. I noticed about three years ago when i would stretch my calf muscles, i could create cramping and charlie horses at the bottom of my calves by my feet however this never stopped me from being active. I also developed a twitching of my pinky finger that was consistent about eny spasms that never stop. During this time I had two nerve conduction tests, the last one about a year and half ago with needles showing no issues. Over the course of the summer however, I have had progressive leg muscle pain. I dont know if I want to say its true weakness, but Im not able to do the things I could do before without my legs getting very fatigued and feeling sore to the touch, even with minimal effort. I can still walk. The spasms have gotten worse. now I also have fatigue in my arms as well but dont feel like I have really lost strength but also have spasms all over. Also my stomach feels sore to the touch and I can basically make it charlie horse anytime i want. Over the course of a month and half ago, I got bad eye spasms which have subsided but then jaw spasms and a feeling of tightness in my throat. There was a time I could not eat it hurt so bad to chew, however now im able to eat but stick to more soft foods. If i try to eat ice it kills my jaw. It feels like when i speak somtimes the muscles get so tight that it makes some words hard to get out but no noticeable slurring. It could be stress related im aware but hasnt gone away in a month and half but i have had times when my jaw pops really loud and then that joint is stiff and hurts bad the next day so not sure what could be causing that. I also have popping in my right ear as well. I should say i have had mris done which shows no lesions and they did find small protruding discs in my neck area, thoratic area with signs of disc degeneration. I have protruding discs in my l5 s1 area one lateral that could be pressing on a nerve root and a 7 mm cyst on my left side in that area as well. The spine specialist i went to see feels like my weakness and problems are not pertained to the back problems. I just hope to get some insight as this is very scary to me. I am scared of mnd but I try to reassure myself that ive had twitching in my feet for years and im still able to move them. Any insight is definatly helpful for me. I do go to see a neuromusclar specialist and am hoping to get some answers real soon. this lady is supposed to be the best in the state and is a director of an als clinic.
 
It really sounds more like some sort of inflammation of the muscles--myopathy of some sort, maybe myositis? A referral to a good rheumatologist might be warranted. Good luck.
Laurel
 
I am glad you are seeing a top specialist. They will be able to properly diagnose you, whatever is going on. Best of wishes to you.
 
Seeing a specialist is the best thing you can do. Rest assurred your questions will be answered. Hopefully you get good news!
 
after appt update Re: Appt wit neuromuscular. scared of mnd

hi all. Thanks for your kind replies. So after a neuro exam and nerve conduction with emg. The neuromuscular specialist feels this is myopathy based on emg findings. She said she really feels its not als ( she is a director of an als clinic so It hasnt crossed my mind since). She said i had some slowed motor nueron responses in a few areas? Anyhoo, she ordered a guantlet of labwork which I should hear back this week sometimea nd then a possible muscle biopsy. I have felt so much better since going as she told me many myopathies are treatable. Even if not though, at least knowing or having a direction helps so much.
 
Hi Shineoflight,

Thanks for posting; please keep us updated on your status. Even though our cases are not identical, they share quite a few things in common. It sounds like your doctors are more proactive though; mine have given me the "nope, don't think it's ALS!" sign and then sent me on my way. I am obviously thrilled with the "no als" opinion, but they still haven't explained my atrophy, fatigue, shaky muscles, cramps, exertion weakness, soreness or non stop twitching (that started in my toes as well.) If I have something that is treatable, I want to treat it, especially since it's been getting worse at a very slow rate.
 
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