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fiddleplayer51

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Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Hello,
My husband is in the process of being diagnosed with ALS. In December 2007 he began noticing his voice sounded different although I didn't notice anything unusual. Then by January his voice had a distinct nasal quality. He went to our PCP who first started him on Clarinex in case his symptoms were allergy related. Then he tried Nasacort and finally the antibiotic Cefdinir thinking that it might be a sinus infection. Nothing helped and a CT of the sinuses was negative. The PCP was convinced that we must be dealing with allergies. We requested a second opinion with an ENT doctor.
My husband also began noticing that he was drooling at night onto his pillow.
His liver enzymes, AST and ALT, have been elevated for a year and so, in addition to referring him to an ENT, our PCP sent him to a gastroenterologist who noticed fasciculations of his tongue. A couple of days later at the ENT appointment an examination with a laryngoscope revealed rhythmic fasciculations of the larynx on the left side. That's when ALS was first mentioned. The ENT referred us to a neurologist who also did a thorough exam and mentioned possible ALS.
In addition to bulbar symptoms of difficult speech and drooling, my husband exhibits hyperreflexivity in his limbs, right side weaker than left, ripples in his back and upper arms, but a negative Babinski.
He had an MRI of the brain and cervical spine this morning, and Friday he goes for EMG and NCV studies. If the neurologist concludes after the tests that it's ALS, he insists on our getting a second opinion. We're fortunate that there's an ALS center 55 miles from us in Charlottesville VA.
This evening while eating supper, he choked badly. He's choked a couple of times prior to this, but this was the worst episode yet.
We also found out today that an ultrasound done on his liver last Friday shows pancreatic cysts. He is therefore scheduled for a CT of the abdomen next Wednesday.
This is all so frightening and sudden. He is 65 and has been so apparently healthy until December.
Luckily, I'm an RN and worked for 14 years as a staff nurse at our local hospital. I've had patients with MS, but never with ALS.
Thank you all for being open about your symptoms, problems, etc. I'm sorry for what everyone is going through. Living one day at a time is certainly key to surviving.
All the best.
 

DeeMichelle

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Messages
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Reason
Lost a loved one
Country
UK
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Hertfordshire
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St Albans
Hi Fiddleplayer
My Father is also being assessed for ALS. For him the symptoms are all around speech and swallowing. Dad's speech has deteriorated greatly over the past year and he has a lot of difficulty making himself understood, but he carries a pen and note paper and keeps his independence. Swallowing is a real problem and my Mum has developed an amazing nutritious and tasty menu with mostly soft foods for him. Though he almost choked on a tablet the other day, which was very scary. His facial muscles have atrophied and he has lost a lot of use in his tongue.

Dad's legs and arms are not affected in any obvious way.

I really hope your husband has good medical care so far the neurologist has been very good with my Dad.

Wishing you both all the best.
Dx
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Thanks for your story and kind wishes, DeeMichelle. Your parents sound as if they're a real team, and your Mum has stepped up to the plate in figuring out how to provide nourishing food for your Father. How old is he?
I wish your family all the best as he is assessed. Take care.
Jane
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
City
St Albans
Hi
Thanks for your reply.
Dad's 74. He has complained of chest pain and breathing difficulty for about 10 years, but without any adequate medical explanation- maybe connected to ALS or not. His symptoms are both typical and atypical. For us tho' ALS is familial and hereditary. My Dad's brother died from it recently as did 2 of their sisters. Dad is due to go into hospital for tests any day now. For a long time he put off seeing a Dr, but the swallowing has become such a concern we could not put off any longer.
How are you both doing through all of this?
All the best
Dee
 

Shatzie

Active member
Joined
Nov 12, 2007
Messages
86
Reason
PALS
Diagnosis
02/2008
Country
US
State
OK
City
Tulsa
If he is choking on liquids it would be best to start thickening his drinks even if he doesn't have a diagnosis yet. Thick-It is easy to find at drug stores, but I don't like the powder and like either Hydra-Aid or Simply Thick, which are gels. I couldn't find any drug stores in my area that stock these, so I had to order them. I bought mine from South Mountain Health Supply. They are a small outfit and have a website, but not secure ordering, so I ordered over the phone and received it in a week.
 

bufbon2

New member
Joined
May 2, 2007
Messages
5
Reason
Loved one DX
Country
US
State
NY
City
West Seneca
Nourishment for Bulbar form of ALS

Hi, my brother is a 20+ year patient with ALS whose symptoms are now progressing into his throat and tongue. We found a web company www.4webmed.com, that you can purchase containers of juices and drinks etc....already mixed with Thick-It. My brother luvs them and orders them by the case. It's the little things we can do to make life a little bit better.

Good speed and love strong,
Geralyn
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Now here is a good time to explain why, this time, we allowed this link. You are reporting information about a product you found helpful, which is allowed. A salesperson for the company would not be able to post the same link, nor would the company itself. The difference is you do not have a financial interest or financial reason to post this info. (unless AL or David over-rides my decision, LOL.)
 

Mand406

Member
Joined
May 25, 2008
Messages
17
Reason
PALS
Country
US
State
Ga
City
Duluth
?

What does thickining a drink do?Also,has any one been Dx orknow of anyone in the late 20's?
 

CindyM

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Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Mand. some PALS (People living with ALS) choke on thin liquids so there are products that thicken liquids to make them easier to swallow. As for your second question, ALS is a rare disease affecting one or two out of every 100,000 people. It usually affects people in mid-life to the later decades.

Sometimes people under 40 get it but this is an even rarer occurrence of a very rare condition.
 

Mand406

Member
Joined
May 25, 2008
Messages
17
Reason
PALS
Country
US
State
Ga
City
Duluth
Thanks Cindy!

I am finally going to the neuro on Monday.I know that is rare,but I have So many of the symptoms.I guess we will just have to see.Has anyone (female)here gotten Dx in their 20's?Also,what does atrophy look like?Thanks so much!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
There are hand atrophy pictures in General Discussion.
AL.
 
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