Old 07-07-2009, 12:00 PM #1
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Default My hustband's symptoms...

At 48 and very healthy, my husband was put on Lipitor for a 240 cholesterol score. Immediately, he was bothered by every small print warning - especially muscle weakness and pain. The doctor prescribed other statin-type drugs w/ the same results. He tried a non-statin and finally decided to go off altogether.
Some of his side effects improved, but the muscle weakness and pain never subsided.
He went to an orthopedic surgeon who took an MRI of his elbow area and found nothing wrong. It even hurt for him to run - or even walk!... couldn't open champagne bottles (ouch!) and couldn't lift weights anymore (and he loved the gym!). He talked w/ several doctors and they said he just needed to wait and let his arms 'recover' (although there was never an injury). It has been over 24 months and he is losing muscle, weight, and strength continuously. It seems to be focused in his arms.. no where else.
For the same amount of time he has also had a chronic irritation of the back of his throat.. usually w/ his first bite of food or drink.. he coughs and coughs and sometimes cannot get it to stop for 20 minutes. I don't know if this is associated or not...

I finally made an appointment w/ a neurologist that specializes in statin-associated myopothy and ALS. I'm really scared... maybe it's just tendonitus... but maybe it's the onset of ALS? Any feedback?

He's a tough guy - he doesn't like not being strong. This is really bothering him.

Thanks!
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Old 07-07-2009, 12:21 PM #2
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Default Are these early symptoms of ALS?

At 47 and very healthy, my husband was put on Lipitor for a 240 cholesterol score. Immediately, he was bothered by every small print warning - especially muscle weakness and pain. The doctor prescribed other statin-type drugs w/ the same results. He tried a non-statin and finally decided to go off altogether.
Some of his side effects improved, but the muscle weakness and pain never subsided.
He went to an orthopedic surgeon who took an MRI of his elbow area and found nothing wrong. It even hurt for him to run - or even walk!... couldn't open champagne bottles (ouch!) and couldn't lift weights anymore (and he loved the gym!). He talked w/ several doctors and they said he just needed to wait and let his arms 'recover' (although there was never an injury). Now, at 50, it has been over 24 months and he is losing muscle, weight, and strength continuously. It seems to be focused in his arms.. nowhere else.
For the same amount of time he has also had a chronic irritation of the back of his throat.. usually w/ his first bite of food or drink.. he coughs and coughs and sometimes cannot get it to stop for 20 minutes. I don't know if this is associated or not...

I finally made an appointment w/ a neurologist that specializes in statin-associated myopathy and ALS. I'm really scared... maybe it's just tendonitis... but maybe it's the onset of ALS? Any feedback?

He's a tough guy - he doesn't like 'not being strong'. This is really bothering him.

Thanks!
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Old 07-07-2009, 12:50 PM #3
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Default don't borrow trouble

I am 50 and have bulbar onset als,obviously your husband has something going on ,but do not think ALS ,let the specialists do there thing,ALS takes a long time to accuratly diagnosed and only with a conclusive EMG test ,i had two before my neuro gave me my diagnosis.I know at times its hard not to think the worst ,but try to be positive about whats going on and worry about what you have control over and what you know.So at this pt i would not be thinking A L S.Good luck and take care
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Old 07-07-2009, 01:00 PM #4
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I agree with Kevinski ... this does not sound at all like the onset of ALS. Just the opposite. Muscle pain points AWAY from ALS.

Also, it would be extremely odd to have both bulbar symptoms (swallowing) and limb onset simultaneously. And bulbar onset almost always affects speech before swallowing.

Good luck.
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Old 07-07-2009, 01:04 PM #5
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Default Thank you!

I needed to hear that! I can just get myself in a tizzy! :0)
Instead, I'm going to think about how lucky we are to have multiple physician options and insurance that is easy to use! Then, I'm going to think about going home to a nice family dinner w/ my hubby and teens! thanks again!
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Old 07-07-2009, 02:38 PM #6
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I can't give you any feedback regarding your husband as I'm in the same situation. Iwent for a short bike ride yesterday with my son. I come back and my head and neck feel heavy and my arms were sore and shaking. I've lost muscle mass both arms and both legs. I shake if I do anything for a short period of time. So I know how your husband feels as I go to the neuro on the 13th and I don' t want to hear what he says -ALS
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Old 07-07-2009, 11:16 PM #7
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ididit60,
Have you been to the Spacedoc site yet? (Google it if not). Lots of people with statin-induced damage talking about ways to recover, supplements, etc. on their forums. I had something strange already coming on slowly but then was KO'd by statins as well. I found lots of info both here and over there.

What is the name of the specialist who understands statin myopathy? I may need to give him/her a call.
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Old 07-07-2009, 11:34 PM #8
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Does he still have a high cholesterol score ?
Instead of meds that make him sick , have you tried Soy Milk ? A couple of glasses a day brought mine back in line.

Until his DX , there are two things he needs to be a tough guy at doing:
#1 - watch the energy level, its like a gas tank once its empty, thats it thats all - time for a nap or a meal.
#2 - try not to stress out. Anxiety makes everything worse. The positive thing is that you do not have an ALS diagnosed.

Glen
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Old 07-08-2009, 06:00 PM #9
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He's going to see Benjamine Brooks, MD of Charlotte, NC. I just found him on the internet: "We're not saying that statins cause ALS, but they may accelerate the course leading to diagnosis in some patients," Benjamin R. Brooks, MD, director of the Carolinas Neuromuscular/ALS-MDA Center, in Charlotte, North Carolina, told Medscape Neurology & Neurosurgery in an interview.
The results were presented here at the American Neurological Association 133rd Annual Meeting.

I'll let you know how the visit w/ Doctor Brooks goes! Until then, all the best!
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Old 08-19-2009, 11:33 AM #10
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Default Update on husband

He had an extensive blood test 3 weeks ago, do not know the results.
He had a nerve conduction study and emg yesterday... waiting to hear from the doc.
The NCS was very extensive.. hands, arms, legs (both sides). The could not get any reading in the pinky fingers. His hands/arms went numb and his feet/hands were very cold (while he was sweating profusely!). They (the testing doc and the tech) left with the print-outs and came back in several times saying the ALS/MND doc wanted more tests done.
Then, the testing doc did the EMG... it went pretty fast... lots of static on the screen when she inserted the needle and continuously. She did both arms and legs rather quickly.

I'm waiting to hear back from the doc... i just want to know what they've learned! I watched the monitors.. but i had no idea what signal was good and what was bad!

Just very curious and anxious. I'll post when I hear something!
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Old 08-20-2009, 09:11 AM #11
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Default new info - not als!

I spoke to the nurse yesterday (finally!) and she said that the doc wants to meet with us and explain what he has found...however until then, the doc wanted to let us know that he did not observe any denervation which would indicate it is not ALS. The doc did say there was damage and wanted to explain what that means when we come into his office.
We meet w/ him in a week.
At least it's not ALS - I'm relieved!(of course, my husband said he wasn't expecting ALS so it's no big deal to him...just different personalities!)
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Old 08-20-2009, 10:01 AM #12
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That's good news! It must be quite a relief. Wishing you and your family all the best!
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Old 08-20-2009, 10:26 AM #13
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I just heard from the nurse again this morning (she called last night, but i was so nervous on the phone that i didn't hear all the details so i had to call her again this morning!)

She said that they did not see any evidence of acute or chronic denervation patterns. (Good, because evidence of this leads to an ALS diagnosis).

The EMG/NCS was not 100% normal however, and there was evidence of polyneuropathy. This is a very general diagnosis so the doctor wants to see Brett again to perform another exam and decide what steps to take next for further diagnosis and treatment.

So, good news as far as I can tell !
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Old 08-21-2009, 10:08 PM #14
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That is wonderful. I'm so glad for both of you!
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Old 08-24-2009, 08:28 AM #15
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Don't borrow trouble. Get tested by a specialist or two and rest in their findings and conclusions.
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