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jik992003

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Hi everyone, first let me say my thoughts and prayers are with everyone here. It has been a very hard week for my wife and I. I have found information, hope and comfort from reading posts on this website.

I am a 37 year old male of asian decent and have been having some noticable muscle weakness since February 2009. I just chalked it up to inactivity for the past few years. As I have 6 yearold and 3 yearold daughters and a pregnant wife keeping me busy. I would consider myself a pretty healthy and fit person. Who use to lift alot of weights and was able to run 10-20 klms up to 2 years ago.

So I decide to start working out taking supplements such as creatine, glutamine and protein shakes. But I started noticing I was getting weaker and over the next few months I was getting skinnier and losing weight.
My wife commented on how she was noticing how skinny I looked. I was 160lbs in January 2009 and today way 143lbs.

I decided to see the doctor 3 weeks ago as I have experienced a very fast amount muscle loss and weakness and weight loss in the last month or so.
I am having extreme difficulty going up stairs and carrying my children. My strength is not there. My leg muscles or quadriceps are getting so weak I have also had shoulder pain for a while now . the shoulde pain used to be just in the morning when I woke up so I thought it might be my pillow, sleeping position or even bed. But now it hurts all day. With little relief from tylenol or advil. Another thing that I have noticed is that maybe in the last 3 weeks I have had a bit of problem getting solid food down or should I say clearing my throat completely. No problems with liquids. Just a little bit of what I'm chewing gets caught in my throat which is easily put down with a drink. I feel like I'm also getting short of breath easily also.

Alarming news when I got my ck results back from recent bloodwork. They were 12,000. Which I was told indicated muscle damage or disease so my gp referred me to a rheumotologist and for and Emg test with neurology consult. Emg test is in 3 days.

I am not experiencing any twitching or atrophy in my hands or feet. The atrophy or muscle loss is in my upper body, shoulders back, chest, arms and legs. And neck. Everyone can tell I have lost weight.

To say the least my wife and I are very anxious as I am sure you all are. I was just hoping that some memeber with more knowledge and experience might be able to shed
some light on my symptoms.

I'm praying for good or clean results from my EMG test.

Thank you again for reading. Look forward to reading your replies.
 
your CK could be elevated from the recent workouts. sometimes it takes up to a few weeks after agressive workouts to stabilize. Best of luck with your EMG, Cookie
 
I am not a dr. but with with a CK level of 12,000 it sounds more like a myopathy(which is treatable) then ALS. Your weakness is proximal which is another good sigh of something treatable. That is probably why your dr referred you to a rhematoligist. They should be able to tell from your EMG. Do you know what other bloodtests your dr has ran?
 
Cookie , thank you for your reply and good wishes. I was working out 2-3 weeks before bloodwork so I hope your right. But the Muscle And strength loss has me worried.
 
I'm with Crystal on the guess of some kind of myopathy. When my husband goes to the day care to get his monthly IVIG, we met a young fellow taking IVIG who had a rare myopathy who described symptoms very similar to yours i.e. fatigue, weight loss, elevated CPK. He was doing very well on the IVIG and was back to work and feeling normal again. Good luck and let us know how things go with your testing.
Laurel
 
Crystal thank you for reply. I am encouraged by your words. What do you mean by proximal? With regArds to bloodtests they checked for hepatitis , HIV, thyroid and some other things I can't remember. I'm going to have to write everything done better or bring a recorder for future Appointments.
 
Proximal means closer to the body (shoulder, upper legs, trunk, neck, upper arms). You can request copies of your records so you can have them for yourself.
 
LAurel thank you for reply. What is IVIG? I hope that is the case and I can go back to my normal life. I like many others here are very scared And anxious.
 
Crystal does distal mean hands and feet?
 
Another comment. The young fellow we met in daycare, I think had a rare type of polymyositis. I need to keep a journal to jog my memory. Here is some description of that disease.
Laurel
What is Polymyositis?

Polymyositis is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness. Polymyositis affects skeletal muscles (those involved with making movement) on both sides of the body. It is rarely seen in persons under age 18; most cases are in adults between the ages of 31 and 60. Slow, but progressive muscle weakness starts in the proximal muscles (muscles closest to the trunk of the body) which eventually leads to difficulties climbing stairs, rising from a sitting position, lifting objects, or reaching overhead. People with polymyositis may also experience arthritis, shortness of breath, difficulty swallowing and speaking, and heart arrhythmias. In some cases of polymyositis, distal muscles (muscles further away from the trunk of the body, such as those in the forearms and around the ankles and wrists) may be affected as the disease progresses. Polymyositis may be associated with collagen-vascular or autoimmune diseases, such as lupus. Polymyositis may also be associated with infectious disorders, such as HIV-AIDS.

Is there any treatment?

There is no cure for polymyositis, but the symptoms can be treated. Options include medication, physical therapy, exercise, heat therapy (including microwave and ultrasound), orthotics and assistive devices, and rest. The standard treatment for polymyositis is a corticosteroid drug, given either in pill form or intravenously. Immunosuppressant drugs, such as azathioprine and methotrexate, may reduce inflammation in people who do not respond well to prednisone. Periodic treatment using intravenous immunoglobulin can also improve recovery. Other immunosuppressive agents used to treat the inflammation associated with polymyositis include cyclosporine A, cyclophosphamide, and tacrolimus. Physical therapy is usually recommended to prevent muscle atrophy and to regain muscle strength and range of motion.
What is the prognosis?

The prognosis for polymyositis varies. Most people respond fairly well to therapy, but some have a more severe disease that does not respond adequately to therapies and are left with significant disability. In rare cases individuals with severe and progressive muscle weakness will develop respiratory failure or pneumonia. Difficulty swallowing may cause weight loss and malnutrition.
 
Laurel thank you. I will research further polymyositis .
 
Yes, distal means hands and feet.
 
Your are most welcome. The young fellow we met did his own internet searching due to the doctors not figuring out what was wrong with him. He took a print out of polymysositis in to his doctor and said "this disease sounds like me." GP read it and did some tests, and then phoned him at home and told him to come to the hospital ASAP and he was admitted and diagnosed. IVIG is intravenous immunogobulin--extracting from the blood. The mechanism of action isn't fully known. It is very expensive. My husband receives it monthly at the cost of approx. $10,000 a month. Luckily paid for under our medical coverage.
Laurel
 
Thank you again lAurel. Wow that's alot of money. I really pray that I do not have ALS but some treatable myopathy such as this. I am going to bring a print out of this disease to my emg on Wednesday. With me having difficulty getting up and down the stairs and out of a chair it really soundslike that might be it well I really hope. Would ALS muscle weaknes and Atrophy happen to me this quick 6 months with no muscle twitching.
Laurel what are you And your husband dealing with? Whatever it may be my prayers are with you
 
My husband has CIDP--MADSAM. Your cpk is very high which is often seen in myopathies, but also extreme excercise can cause elevation and I wonder if the supplements you took impacted on the cpk as well. I don't know the answer to your question about muscle weakness and atrophy and no twitching. But think positively and get a mind set that it is a treatable condition. Easy for me to say as I know the anxiety that happens when you fear ALS. We went through that when hubby had a differential diagnosis of ALS in the beginning of his diagnosing process.
Laurel
 
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