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amysgarden

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Feb 20, 2015
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32
Reason
CALS
Country
US
State
WA
City
Oak Harbor
My husband is a big, tall burly guy. I have noticed over the last year that he seemed to have lost muscle mass and we chalked it up to age (early 50s). Instead of having tree trunk legs and arms, he has skinny guy legs/arms. Still no big deal.

He has had some cramping, tremors or fasciculations. I noticed him dropping things, tripping, general increased clumsiness over last 6-9 months. We went to the beach last fall and he could walk on the beach. We went a few weeks ago and he literally could not walk on the beach without my help (went went only 10 feet or so on hard packed sand before we had to turn around). Then I looked at him. He has a prominent foot/ankle/leg weakness on the left which was why he was falling to the left. His gait is extremely abnormal (using his whole body to walk).

He has no pain, no numbness or tingling. No slurred speech or trouble swallowing or headache or feeling of loss of balance or bladder/bowel problems. The problem has been persistent and progressive (does not get better or worse).

He is a man's man and will not complain (which is why he never said anything). He has adapted to this over the last year on our farm in ways I hadn't noticed until- until I noticed (using tractor all the time, not lifting anymore, projects undone, unable to lift and grip hale bales). He had to have his CPAP settings increased last year and he has complained about extreme difficulty turning in bed.

I am a nurse and dragged him to the doctor who was very concerned. He is unable to stand or walk on his heels (r/t strength), can only stand on tiptoe for seconds and only if holding onto something. The doctor sent him for CT scan (normal) and MRI of lumbar (no results yet). Then she states he will go for neuro consult. Doctor was quite concerned and refused to do any blood tests - she felt the other tests were more urgent.

The doctors I work with were not reassuring. I have a friend who takes care of ALS patients who said that everything I discussed sounded like potential ALS. I was under the assumption (since in my area of practice I have not cared for ALS patients and have little practical knowledge of it) that it would always move faster and present with bulbar symptoms. I have been told this is not necessarily true.

I am worried but not. I know either it is or it isn't and knowing this very minute will not change the outcome one bit. No early treatment or cure (as opposed to early cancer treatment) but I do know enough to be alarmed.

Anyway, thanks for listening. My doctor friends have suggested that an EMG is next and should give us some answers. It all takes time.

Amy
 
Amy, most of us have found a diagnosis can take quite a while- almost 2 years for my hubby,but once he had an EMG, the diagnosis was quickly arrived at. Good luck- we all hope you don't belong here, but if you do, it's a great place for support and information.
 
Amy, I'm glad that you convinced him to see the doctor. No, ALS doesn't always move quickly, nor does it always begin with bulbar symptoms, and what you describe sounds very familiar to me. That doesn't mean this is ALS, and I certainly hope that the EMG points away. I'd rather it send you on an endless round of searching than that it confirm your fears.

I understand your fear and admire your approach. This is a very informative and supportive place, full of wonderful, loving people. As you've correctly figured out, there is no point in rushing to conclusions, but if you have any questions feel free to ask them, and if the news is bad know that we will be here for you. It's a very small and exclusive club, and we hate to have to admit new members, but you won't find a better one. My fingers and toes are crossed!

Hugs, Becky
 
Will be praying for your husband. Still could be many other things yet. Glad your husband is getting a EMG. His issues sound quite similar to my dad's who has limb onset ALS. Keep us posted. We are definitely here for you if you need us. A big hug and prayers. Kim
 
You are in my prayers
 
Amy, only 20% of ALS patients present with bulbar symptoms. What your husband is experiencing would be very concerning to me. An EMG wii give you both answers. My husband's ALS was diagnosed rather quickly once his MRI and CT scans came back normal. I'll be praying for your husband and you, too. Let us know the outcome. Blessings!
 
Thank you all for your concern. As an RN I know enough to worry.

Today my husband picked up my hand weights- small barbells (he has refused them in the past because they are "way too light"). He had trouble doing 10 bicep curls (I can do 20 easily and I don't work out) and was grunting like a bodybuilder lifting an oversized weight. Also, he was only able to do 8 on the right and barely 10 on the left (he is right hand dominant so doing less on the right was suspicious). There was so much effort I thought he was joking. His response was that he knew his hands were weak but he had no clue how weak his arms had gotten.

He also admitted that he is now unable to step onto the tractor with his left foot and has to climb in using the right and pull his left leg onto the tractor step. Still no pain or numbness.

I am trying to be patient with the process but sometimes the worry overwhelms me. My husband told me he will worry when he has a diagnosis. He also told me that he doesn't worry because I am there to do it for him LOL.

I still have hope it is just an electrolyte imbalance or a nerve compression or really anything else.

Amy
 
make sure when you seea neuro, they are ALS trained or use a clinic in seattle.



Max - Saturday, February 21, 2015 4:14:41 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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Amy, I agree that EMG/NCV testing is in order for your husband sooner rather than later. Since I am in Seattle, let me know if/how I can help.

--Laurie
 
Now that I think about it, I do need suggestions of physicians or clinics in the Seattle area. I was thinking of trying to take him to Virginia Mason (which I think has an ALS clinic?) or Swedish (which I understand has a well rounded neuro department?).

My husband's doctor will send him wherever we ask. I just don't want to see the neurologist in our area because I do not think highly of the person (and that doctor specializes in MS).

My husband's doctor's office is notoriously lax and slow about follow up/referrals so I will need to call tomorrow to put on pressure. The MRI was done last Wednesday and we have not heard back on it.

Amy
 
Amy, I had been under the impression one had to have a referral to see a Neuro but recently I talked with a guy who has a family history of MS. He began to feel the symptoms of such and called a Neuro Center and they gave him an appointment without going through his GP. Sometimes I would question, in my mind, when I would read on this Forum that someone just called a Neuro/ALS Clinic and got an appointment. So, give that a try without going through your GP. He's had an MRI so whoever you chose just may see him.

I'm having a bad day... did that make sense?
 
Regarding referrals, it depends on your insurance -- and sometimes the specialist has their own policies. I went straight to a neuro when I started having issues b/c my plan does not require referrals.
 
I had been under the impression one had to have a referral to see a Neuro
i think that depends on both your healthcare (is it allowed) and on the Neuro (do they accept w/o a GP screening).
 
Call 1-800-SWEDISH and ask about the Swedish Neuroscience Institute in Cherry Hill.
Also call 206-341-1900 for Virginia Mason's Neuroscience Institute. They both have ALS specialists.
 
Let me clarify: our insurance requires a referral but the doc has said she planned to get a referral going after the scans came back. They will send us local (which I don't want) unless we say we want to go elsewhere. Then they will send us to whatever doctor we choose.
 
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