LookInWord
Member
- Joined
- Dec 7, 2010
- Messages
- 12
- Reason
- Friend was DX
- Country
- US
- State
- mi
- City
- gr
First, hello to everyone!
I'm writing not for myself, but for my fiancee. I'm not going to ask for a diagnosis.... I'm just asking for some opinions, and maybe words of encourgement. Heres my story..;
So, two years ago, my fiancee says " my hip is aching"...... Over a few months it flares, and never gets better. A year later I convince him to go to the doc thinking arthritis. They say bursitis, and send him for physical therapy..... And months later, hip still hurting. He gets a shot which lasts three days..... So a few months later his opposite leg thigh was feeling weak and sore as if he had been to the gym, he chalked it up to baby'ing his bad hip, until that is when both thighs started to feel really sore, and weak.... Still being stubborn and blaming work, a wk later or so, it was happening in birth biceps. He couldn't pick his son up, and they felt like he did a workout. We go to the doc, blood work reveals CPK levels at 11,000... Were told to go straight to the ER. Three days later, and tons of fluid, a ruemy comes and days he thinks he has Polymyositis, and orders a thigh muscle biopsy before we leave. He feels better soreness wise wen we leave from the fluid..... Few weeks later, the biopsy results showed no polymyositis, and no inclusion body myositis. we are now scheduled to see a Neuroligist. the ruemy wrote on our papers " like ALS"..... so, that has led me to research. I have learned a bit! He has stayed the same and has no symptoms... Here its where he's at...: muscle necrosis in top of thighs, in both biceps. And of course those muscles are very weak., and high cpk levels. That's it right now.
I would just like to ask, has anyone started like this?
BTW, in the hospital the MRI showed his thigh was being replaced by some fatty tissues in the muscles. AND there NEVER was a bursitis!..... So that must have been the star of all this two years ago.
Any thoughts greatly appreciated. thank you
I'm writing not for myself, but for my fiancee. I'm not going to ask for a diagnosis.... I'm just asking for some opinions, and maybe words of encourgement. Heres my story..;
So, two years ago, my fiancee says " my hip is aching"...... Over a few months it flares, and never gets better. A year later I convince him to go to the doc thinking arthritis. They say bursitis, and send him for physical therapy..... And months later, hip still hurting. He gets a shot which lasts three days..... So a few months later his opposite leg thigh was feeling weak and sore as if he had been to the gym, he chalked it up to baby'ing his bad hip, until that is when both thighs started to feel really sore, and weak.... Still being stubborn and blaming work, a wk later or so, it was happening in birth biceps. He couldn't pick his son up, and they felt like he did a workout. We go to the doc, blood work reveals CPK levels at 11,000... Were told to go straight to the ER. Three days later, and tons of fluid, a ruemy comes and days he thinks he has Polymyositis, and orders a thigh muscle biopsy before we leave. He feels better soreness wise wen we leave from the fluid..... Few weeks later, the biopsy results showed no polymyositis, and no inclusion body myositis. we are now scheduled to see a Neuroligist. the ruemy wrote on our papers " like ALS"..... so, that has led me to research. I have learned a bit! He has stayed the same and has no symptoms... Here its where he's at...: muscle necrosis in top of thighs, in both biceps. And of course those muscles are very weak., and high cpk levels. That's it right now.
I would just like to ask, has anyone started like this?
BTW, in the hospital the MRI showed his thigh was being replaced by some fatty tissues in the muscles. AND there NEVER was a bursitis!..... So that must have been the star of all this two years ago.
Any thoughts greatly appreciated. thank you
Last edited by a moderator: