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Old 09-09-2009, 11:15 PM   #1 (permalink)
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Default Is this als?

ONSET BEGAN WITH SINUS INFECTION AND BRONCHITIS SEPT 2008. MY HUSBAND IS AN ENT SPECIALIST. HE TREATED HER. ABOUT ONE MONTH LATER SHE HAD A CHOKING AND BREATHING PROBLEM EPOSIDE LATE AT NIGHT. HE DIAGNOSED HER WITH GERD (REFLUX DISEASE). ABOUT ONE MONTH LATER SHE WAS NOT GETTING ANY BETTER AND WAS LOSING HER VOICE. i NOTICED HER SPEECH WAS DIFFERENT...LIKE MORE DELIBERATE..ALMOST SLURRING WITH SOME WORDS. MY HUSBAND TOLD ME THEN HE THOUGHT SHE MAY HAVE SOME KIND OF NEUROLOGICAL DISEASE. HE MENTIONED PARKINSONS. HER MEDICAL HISTORY INCLUDED SPINAL MENINGITIS IN 1972, IN A COMA FOR 3 DAYS AND WOKE UP WITH EYES CROSSED. SHE ALSO IS DIABETIC..DIAGNOSED IN 1995. IN APRIL OF 2009 WE NOTICED WEIGHT LOSS, LOSS OF APPETITE, LOSS OF VOICE AND SPEECH QUALITY. SHE HAD SEVERAL MORE EPISODES OF CHOKING ON FOOD OR DRINKS. WE NOTICED A CHANGE IN HER POSTURE. HER UPPER BACK AND NECK WERE LOOKING HUNCHED OVER. IN JUNE 2009 WHILE ON VACATION SHE GOT SEVERLY CHOKED WHILE TRYING TO TAKE PILLS. SHE WAS RUSHED TO THE HOSPITAL. THE
DOCTOR THERE (IN CANADA) MENTIONED HE NOTICES TWITCHING IN HER TONGUE. ALL BLOOD WORK AND CHEST XRAYS WERE NORMAL. SHE WENT BACK HOME TO HER PRIMARY CARE DOCTOR. SHE CONTINUED TO LOSE WEIGHT,LOSE STRENGTH AND LOSE ENERGY. SHE EXPERIENCED SHORTNESS OF BREATH AND SWALLOWING PROBLEMS . SHE BECAME FEARFUL TO BE LEFT LONE. SHE NO LONGER COULD WALK WITHOUT NEEDING TO SIT DOWN. sEPTEMBER 4 W GOT A CALL AT 11:30 PM. SHE WAS IN PAIN LOWER LEFT ABDOMIN. SHE WAS SENT TO ER AND DIAGNOSED BY CT SCAN WITH DIVERTICULITIS. SHE WAS ADMITTED INTO ICU. AS OF TODAY SHE IS STILL THERE. SHE IS CLEAR OF PAIN BUT IS HAVING SEVERE SHORTNESS OF BREATH, DIFFICULTY IN SWALLOWING,AND RAPID HEARTBEAT. sHE IS GETTING WEAKER BY THE DAY AND CAN BARELY MAKE IT TO THE BATHROOM. SHE IS LOSING CONTROL OF HER BOWELS AND URINE. SHE CAN BARELY SPEAK AND THE WORDS AND GARBLED.
IS THIS ALS?
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Old 09-09-2009, 11:58 PM   #2 (permalink)
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Default Re: Is this als?

Hi Chrissy. Sorry about your mom. Some of the symptoms you describe do sound like some ALS symptoms but they don't usually all come at once and so many. Has she been seen by a Neurologist?I think she needs one and a Respirologist to check her breathing. If nothing else they can at least make her more comfortable.

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Old 09-10-2009, 07:23 AM   #3 (permalink)
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Default Re: Is this als?

Chrissy,

Since your husband is an ENT Specialist, perhaps he has some connections with a neurologist's practice or can get her evaluated by the ALS Clinic near you.

Mayo Clinic Jacksonville
An ALS Association Certified CenterSM
4500 San Pablo Road S.
Department of Neurology
Jacksonville, FL 32224
Kevin Boylan, MD - Medical Director
904-953-6915

or

Suncoast ALS Clinic
2201 Central Ave
St. Petersburg, FL 33713
Directors: Steven Cohen, M.D; Alberto Vasquez, MD
727-824-7132

Most hospitals are not prepared to help someone with ALS, as it is "rare" and the medical staff are not knowledgeable about the symptoms. If your mother is elderly, they may be chalking this up to old age.

It sounds like you have done the ground work of researching what may possibly be afflicting her, but only a neurological exam and testing will give you the answer. I hope you will be able to find the help that she sounds like she definitely needs.
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Old 09-10-2009, 08:03 PM   #4 (permalink)
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Default chrissymojo-

As Al & brooksea have suggested, she needs to be evaluated by a neuro. It is not clear from your post if she was evaluated by an ALS specialist, or even a neuro for that matter.

But, you post did have some similarities to my husband's situation. I refer you to my post on the thread "UMN dominant ALS". I hope this helps, or at least gives you some source of info.
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Old 09-10-2009, 08:41 PM   #5 (permalink)
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Default Re: Is this als?

I would just agree with Al and Brook, get your husband to get a good neuro involved. I agree it all sounds quick, mayber a stroke? gosh sorry you are facing such a quick decline, it is so disheartening when you do not know what is going on. Please keep us informmed, hope you get some answer's and some improvement for mom.
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Old 09-13-2009, 11:43 PM   #6 (permalink)
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Default Re: Is this als?

Well, definitely don't freak out until you see a neuro, but I will be honest and say a lot of what you describe was my mom, who had ALS.
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als, als?, back, choking, onset, pain, parkinsons, problem, speech, swallowing, twitching, weight loss


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