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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 07-02-2009, 06:06 PM   #1
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MYWILLOW HB User
Question Does any of this sound familiar?

I'm 48, female, and i am slowly stiffening up. For one year i have developed various symptoms, involving different body part, but they all have something to do with feeling stiff, weak, or in pain. Currently my trapezius muscles are affected - they have tightened up over six months. If i move the muscles a lot it hurts more. Before that it was my hips, that was weird. Every time i sat for awhile and tried to get up it felt like i was fused in a bent position. I had blood tests done: All were normal except my tsh (i'm hypothyroid, corrected by synthroid), and ck which has been consitantly elevated, around 228 now. I am now having cramps and pains in my feet, mostly the right one, it's worse at night. My current doc mentioned ms, but from what i've found out via the internet, elevated ck can be a symptom of muscle disease, but is not a symptom of ms. What ever thios is, it's moving through me fast. I stopped walking upstairs when possible because of how weak i felt, now i'm starting to get a weird feeling walking dow stairs, stiff reflexes. So, what do you think?:

 
Old 07-06-2009, 02:23 PM   #2
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pharper52 HB User
Re: Does any of this sound familiar?

MyWillow, have the doctors ever diagnosed you with fibromyalgia? I lived with simlilar symptoms for 6 years until I changed doctors and finally found one that was willing to go that extra mile. I am so greatful to him. I am curently trying a new drug, Savella, and it seems to be working well. I was taking Lyrica and it kind of played out on me and wasn't helping me. The side effects from Lyrica are awful, blurred vision, forgetfulness, weigth gain. I know about the fatigue, stiffness, awlful pain and aching. Maybe it would be worth a shot to ask about it. Just a thought. Take care andmy thoughts are with you.

 
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Old 08-21-2009, 04:53 AM   #3
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polisaryo HB User
Re: Does any of this sound familiar?

Hello

Relax. Your symptoms has nothing to do with ALS or any kind of MND.

As you are a woman talking to a doctor specialized in fibromyalgia would be a good start.

Best wishes

 
Old 10-15-2009, 10:20 AM   #4
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Re: Does any of this sound familiar?

First off how do you know what this poor woman's symptoms have to do with. I also believe Fibromyalgia could be a possibility. Who have you been to see so far? What kind of doctors? I have similar problems except my tests are forever coming up normal, I am hoping that something will show up but it will be too late at that point. So, I understand how you feel. Don't give up on what you think is going on, research and be your own advocate. You will find your answers but you can't give up. I hope this helps. I am in the same boat and things are progressivley getting worse. I will say a prayer that you find the answer you need. Sometimes we just want to know what is going on no matter what the answer is. It's hard not knowing and just feeling as if you are fading away.

 
Old 10-18-2009, 07:30 AM   #5
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Question Re: Does any of this sound familiar?

HI, HAVEN'T LOGGED IN FOR AWHILE, THANKS FOR THE INPUT. AS IT STANDS NOW, I HAVE AQUIRED ABSENT ACHILLES REFLEXES BILATERALLY. I HAVE SEEN A NEUROLOGIST AT THE END OF AUGUST. HE ISN'T SURE. HE THINKS BECAUSE MY THYROID QUIT AT THE SAME TIME THE SYMPTOMS STARTED THAT I SHOULD JUST WAIT A LITTLE WHILE TO SEE IF SYMPTOMS CLEAR UP. I WILL SEE HIM AGAIN IN DECEMBER. IF STILL THE SAME I WILL BE SENT FOR A MUSCLE BIOPSY. HIS PRELIMANARY DIAGNOSIS IS SOME SORT OF MYOPATHY, BUT HE'S NOT SURE. I WORK IN A CLINIC, IN A HOSPITAL SETTING. I SEE THIS THIS DOC IN THE HALLS ALL THE TIME. A WEEK AFTER MY APPT. HE SAW ME AND TOLD ME TO NOT STREESS OUT ABOUT THIS, AND HE HAD A REALLY CONCERNED LOOK ON HIS FACE. SOMEONE IN OUR OFFICE TOLD ME HE DOESN'T BELIEVE IN MYOPATHY, I SAID HE MUST SINCE HE TOLD ME I HAD IT. WHAT I REALLY AM LOOKING FOR IS SOMEONE WHO HAS HAD THE SAME SYMPTOMS, OR A DOC CASUALLY READING THIS TO SAY "HEY, THAT SOUNDS LIKE ...!"
THIS IS ME TO DATE: WEAKNESS, SLIGHTLY ELEVATED CK TEST, MUSCLE CRAMPS, PERIPHERAL NEUROPATHY - ESPECIALLY MY RIGHT FOOT AND LEG, MILD PAIN BETWEEN MY SHOULDER BLADES, STIFFNESS IN MY HIPS AND THIGHS THAT LESSENS WITH MOVEMENT, BILATERAL ABSENT ACHILLES REFLEX, AND THE SENSATION THAT SOMEONE IS HOLDING OR TOUCHING MY HANDS AND RIGHT FOOT. DOES ANY OF THAT SOUND FAMILIAR?

 
Old 05-27-2010, 11:04 AM   #6
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Madeofglass HB User
Re: Does any of this sound familiar?

My CK-level was 347... and I have pains all over my body. I'm constantly tired. What could I have? Anyone?

 
Old 05-28-2010, 03:30 PM   #7
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Question Re: Does any of this sound familiar?

Haven't posted anything for awhile. But, just in case any of this sounds familiar. It has now been about two years since this all started. Basically the medical community believes unless it's a major problem you really don't need to know exactly what it is. They have officially told me I have hypothyroid induced myopathy/neuropathy. This is the "pat" answer. They have not explained how it is possible to be on thyroid meds for two yrs with the tsh normal and still be slowly losing control. It was also hinted by my current Doc that MS doesn't fit, but he won't go the extra mile.
Currently my biggest symptom is a strange feeling in my hands, mostly right, where some sensation is gone but not completely. The closest thing I've ever felt to compare it to is novacaine. It's like when you just had dental work and the stuff is wearing off, your lip feels thick and unatural but you can feel yourself touching your lip. My middle to pinkie fingers are most affected. Also, my ankles swell a lot, and my right leg is not as full in the calf muscle like it use to be. Other than that the foot pain is so there on a daily basis I have gotten use to most of it. When the next major event happens, then, and only then, are they sending me to have a muscle biopsy. That's what I get for being a strong woman who hardly ever complains.

 
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