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LookInWord

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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
 
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Rick's CPK has been high but is now in the normal range. His first symptoms were that his thighs and calves didn't measure the same and there was significant loss of muscle mass in his calves. He began to stagger and if he were to have to stand for a few minutes, his knees would weaken.... you'd see his legs slacken. From what I have learned I am safe to say that ALS has much weakness associated with it, rather than pain first. And later, not everyone experiences pain... but everyone gets weakness. It sounds like you have good specialists and should listen carefully to them. It usually takes time for a definitive diagnosed of ALS. It's that all other diseases must be eliminated first. You can't just have an EMG or a sleep study or a blood test to come to a quick conclusion. I wish you all the best as you continue on your journey. Try to live life as usual and not upset yourselves too much.

In the prospect of marriage to come, I hope his problems don't sway your decision to marry or not. I wouldn't let health reasons influence me.... but that's me. You should be able to support each other in love and commitment.
 
You mentioned that your fiance got an injection every 3 days. Were those cortisone injections? I believe that cortisone can elevate CPK. The neurologist will do a range of testing including EMG, NCS, and lumbar puncture. There are conditions that mimic ALS--in particular MMN and some CIDP motor variants. Good luck.
Laurel
 
Thank you for replying. I want to be his rock, no matter what happens. I just have confusion as to if this started two years ago, wouldn't he have more symptoms than this?.... btw, he was 38 yep years ago, when his hip started. all along, it sounded more like poly, but I know its a process of elimination, before we'll know.
 
To Lauren, he only had one shot. It was not even cortizone.... It was something else, and that wad a year n half ago when it just seemed like bursitis...... And go figure, now that his thighs and biceps have muscle desk and weakness, his hip is fine...... So far he's staying the same, no new symptoms.
 
Sorry, my spell check is bad..... Meant " muscle death" in thighs and biceps.
 
Some people with polymyositis will have a negative muscle biopsy and then further investigation via guided MRI has yielded a positive biopsy. But never the less, the neurologist should figure things out.
Laurel
 
They did arm MRI, that's wen they saw the fatty tissue replacing sum of the parts of dying thigh muscle.
 
My suggestion would be to have the neurologist offer up his opinions, but immediately request a referral to a neuromuscular clinic. They are typically much better at diagnostics.

The reason I call it neuromuscular issues are widely varied and many can mimic ALS and not be. Yes, those clinics see more ALS than they want to, but often find something benign or treatable too. Best wishes.
 
LookInWord,

I am confused...are you diagnosed with ALS? You Forum interest says that you are.
 
no, i do not. I'm here searching for all I can, for my fiancee. when I say "we", I'm referring to him and I as a team, tho he does not kno I've joined this forum.... If there was confusion I apologize. I guess I've been confused as to why his thighs and biceps would have muscle death, replaced with fatty tissue.... And why the ruemy wrote the words " like ALS" on the top of his paperwork for the neuro... I'm not looking for answers for I will leave that to his doctors, I was just coming here for thoughts and opinions.
 
My experience with fatty tissue found in muscles of mine was that it was noted as atrophy but this was not due to motor neuron trouble. I say this to let you know there are other things out there that are far less serious than ALS that can be the cause of atrophy.
 
Myopathies cause this to happen as well and are similar to ALS. Has he had a biopsy of the atrophic muscles?
 
yes, he had an Mri in the hospital when they were trying to flush the cpk and rhabdo out of his system, and they saw muscle necrosis, and fatty tissue replacement in the muscles if both thighs.... They were equally affected, same with both his biceps. he has no other symptoms, and has not gotten any worse.
 
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