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firefly34

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May 7, 2018
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Lost a loved one
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US
State
AL
City
Enterprise
Hello all,

First I would like to say my heart goes out to those struggling with this horrible disease.

I’m writing today to ask opinions about my Dad’s situation. I will try to be brief, but thorough.

Nov. 2017 - Dad swears he remembers falling while outside, and then getting up and moving on. He did not tell me about the fall until later.

Dec. 2017 - Christmas shopping, I noticed he tended to veer in one direction while walking - to the left. He would correct himself and do it again.

Jan. 2018 - Dad falls backwards carrying groceries after his left leg buckles on him.

Feb. 2018 - Dad gets very sick but this is because of bad gallstone stuck in his bile duct. We also notice he has a lot of trouble walking, but can walk under his own power. Five day hospital stay results in gallbladder removal, and doctors say weakness will likely go away with time. He walks very well for a few days after leaving hospital.

Late Feb. 2018 - Trips and falls again and has trouble getting up. We take him to urgent care as he has degenerative disc disease and we think it could be related.

March 2018 - MRI on low back. Dad reports pain to touch near inner thigh on left knee. Has to start using crutches to support himself. Notice he has foot drop in left foot, often getting it caught on rugs, etc.

Mid March 2018 - Refered to neuro-spine Specialist. Requests MRI of entire spine and brain. At this point my Dad is in a wheelchair and has lost all ability to move his hips in any direction. Right leg is weak as aell. Arms starting to get weak. MRI is clean. Neuro-spine gives referral to neuro.

Mid April 2018 - Neuro does basic reflex test at first appointment. Remarks that he has good reflexes. Dad demonstrates both legs are weak but weakness more pronounced. Neuro tests coordination by having Dad touch fingers to nose and he does it easily. Only has issues raising hands to head level. Reports it is painful to do so.

Current - Neuro puts in order for home health consultation (not sure why, which scares me). Home health looks at left hip, where Dad reports a lot of pain. She calls in an order for an X-Ray and says his hip could be broken because his leg apparently appears shorter (I don’t see it) and his leg always flops out to the side, uncontrolled. We are awaiting results of X-Ray.

Another Neuro appointment tomorrow and first EMG test Wednesday.

Dad’s symptoms currently are extreme weakness in left leg (stronger in abduction only), inability to move hips, arm weakness and loss of grip strength (has to hold a drink with two hands), inability to sit up from lying down without assistance. He is wheelchair bound. He’s reporting a lot of pain in left hip and lower spine when his left leg is moved (he cannot move it on his own). The most alarming thing, and the reason that I’m here, is I noticed the power of his sneezes has diminished. I asked him to cough for me and he could not muster up a powerful, normal cough. The other day I also noticed muscle twitching in both legs, arms and hands.

I know that breathing issues are related to ALS, and some of the other symptoms I have mentioned, so now I am very worried.

It’s probably worth noting that my Dad is Type 2 Diabetic and has not been monitoring his blood sugar.

I hate to clog this forum with posts such as this, but I’m hoping for at least a discussion. We are growing frustrated because it has been months without an answer.
 
Definitely EMG is indicated. Also should have muscle enzyme testing (CPK and Aldolase). There may be more than one thing going on. Due to the fall and the hip pain, I’m assuming he has had complete xrays of hips and lumbar spine. If not, these are certainly indicated.

The differential diagnosis is still broad at this point. Things like spinal stenosis, other nerve compression, fractures, polyneuropathy, and myopathy all need to be considered and ruled out. There is also a condition known as diabetic amyotrophy which can affect nerves and muscles.

So a thorough evaluation by a good neuromuscular disease specialist ought to get the ball rolling and answer some questions for you. Best of luck,
 
Very sorry to hear about your dad's decline, Firefly. I can't add anything to what Karen said about possibilities and tests, except to encourage you to try to work out a way for your dad to monitor his glucose and be on a drug regimen to match his needs, which will help him feel better overall, and to make sure he's eating and drinking in line with that as people who have difficulty moving often lose track of how little they are hydrating, in particular.

Once he has a diagnosis, I would ask the neuro or primary doc to order home health PT to develop a regimen that even in his wheelchair or bed, can help mobilize whatever muscle he has to try to avoid contractures and reduce his hip pain. Massage might help as well, and there are MTs who specialize in seated massage, as well as some who make home visits. I would also consider a low voltage heat mattress pad for his bed, and get a hospital bed ordered along with PT based on the final diagnosis.

As a reminder, a second opinion is always advisable in any kind of neuromuscular disorder such as what your dad may face.

Let us know how the neuro appointment/EMG goes.

Best,
Laurie
 
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