Old 09-01-2009, 01:46 PM #1
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Question What are first ALS symptoms?

I am a 46 year old female. In December of 2008, I was diagnosed with chronic hives and angioedema (facial swelling). Bloodwork showed that I had a chronic urticaria index of "greater than 50." Normal CUI is 0 to 10. Allergist said that this result showed likelihood of autoimmune disease, not food or environmental allergy. In Spring of 2009, I became extremely ill. Lost 10 pounds in two weeks. Bedridden. Extremely weak and fatigued. Had difficult time breathing. Breathing actually stopped at times. Had difficult time holding up my head or walking. Got very weak and knees would lock when in hot shower. After a few weeks, I slowly began to improve but developed different symptoms. Tingling in feet and legs and hands. Now, in addition to this, also experience muscle twitches and tiny spasms throughout body (feet, legs, torso, back, arms, etc.). I have sustained clonus in both ankles. I also have hyperreflexia (3 to +4). I also have burning feeling in my lungs. I am concerned about possibly having ALS. Can anyone provide me with feedback?
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Old 09-01-2009, 02:54 PM #2
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Have you been checked for CIDP?
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Old 09-01-2009, 04:26 PM #3
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This doesn't sound anything like the onset of ALS.

What did the doctor say this spring when you were so ill? Your description of your spring illness sounds a little like a bout of pneumonia I once had, but in your case, it seems connected to these ongoing symptoms.

Good luck finding an answer soon. I'm no doctor, but I think you can cross ALS off your list of worries.
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Old 09-01-2009, 04:35 PM #4
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What tests have you had? Did you have an EMG? Have you been to a rhuematoligist?
It doesn't sound like ALS.
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Old 09-01-2009, 05:37 PM #5
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Hi Laurie,
Have they considered Guillain-Barre? Or as Miss91 said CIDP. Both can occur following a major infection.
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Old 09-02-2009, 08:18 AM #6
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I would check into being tested for Myasthenia Gravis.
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Old 09-02-2009, 02:00 PM #7
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what is cipd please ?
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Old 09-02-2009, 02:07 PM #8
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Default What is CIDP? Is it Chronic Inflammatory Pulmonary Disease?

Quote:
Originally Posted by miss91 View Post
Have you been checked for CIDP?
What is CIDP? Is it Chronic Inflammatory Pulmonary Disease?
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Old 09-02-2009, 02:07 PM #9
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What is CIDP? Is it Chronic Inflammatory Pulmonary Disease?
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Old 09-02-2009, 02:08 PM #10
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What are symptoms of this?
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Old 09-02-2009, 02:11 PM #11
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Quote:
Originally Posted by Shatzie View Post
I would check into being tested for Myasthenia Gravis.
What are symptoms of Myasthenia Gravis?

I am still new to this, so am not sure how to ask people questions when they respond to my postings. Can anyone help me?
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Old 09-02-2009, 02:57 PM #12
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Hi Laurie,

you can get a lot of useful information about some of these illnesses, such as myasthenia gravis, online, but I would suggest you only go to a reputable site of medical information, such as the Web site for the Mayo Clinic.

Good luck,

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Old 09-02-2009, 05:37 PM #13
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thank you, i will look into that one
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Old 09-02-2009, 07:59 PM #14
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CIPD is explained on Wiki: Chronic inflammatory demyelinating polyneuropathy - Wikipedia, the free encyclopedia
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Old 09-04-2009, 08:44 AM #15
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Default Re: What are first ALS symptoms?

The extreme fatigue that came on you suddenly is a symptom of MG, so are the breathing problems. When an MG patient stops breathing and has to be hospitalized and intubated, it is considered a "Crisis". I have the muscle spasms and twitches also. Last week was a very stressful week for me and then last weekend I had difficulty breathing, like someone was sitting on my chest. I didn't have to be hospitalized, but it was the worst breathing episode I had experienced. My main symptoms are swallowing difficulties and slurred speech.
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