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jpsugar123

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OK this is long so please bear with me! August 30th mom had surgery to remove an ovary. They put the anesthesia in her right thumb. Since she woke up from surgery, it hasn't functioned at all. Mom was the picture of perfect health leading up to this surgery just so you know. She woke up from surgery feeling achy like she had the flu and was immediately inundated with severe fatigue. She also had a persistent low grade fever which would continue for the next 3 months. The month of September, she rapidly loses strength in her legs (slight atrophy at this point) and has to use a cane (with the four prongs at the bottom for better stability). The first weekend of October she is getting weaker and weaker so we had to get her a lightweight walker. The month of October she keeps going downhill to where it takes her 30 minutes (yes 30 minutes) to walk from the car to the backdoor which is roughly 20 feet. We see a Neurologist who performs an EMG and tells us she has motor neuropathy with conduction block. They give her IVIG's which didn't help. She is practically shuffling at this point and is unable to lift her foot much over an inch off the ground. November 17th she falls because the weakness is so severe in her arms she can't hold herself up at the kitchen sink so we take her into the hospital. A top doc here in St. Louis tells us she has CIDP and she undergoes 5 days of IV steroids (Solumedrol). Mom has no fasciculations after the treatment, she has no more flu-like achiness and she stops running a low grade fever. Better yet, she has increased muscle tone and can use a sliding board in the Rehab facility like a pro. She is sooooooo much stronger and has better mucsle tone throughout rehab. 2 weeks after coming home from rehab the achiness, fevers, and fasciculations return so we take her back to the hospital. They give her steroids which immediately stops the fasciculations and fever. She was then told by the doctor to do a 5 time plasma apheresis. That did not help at all. Mom went to a different hospital in early January where they did the EMG for a third time. They said it's not CIDP. They also did another spinal tap (all THREE have shown a high level of protein in her spinal fluid). She got another 5 day treatment of IV Solumedrol and has beautiful biceps (bigger than when she went to the hospital the third time) and her calf muscles are twice the size of when she went into the hospital in early January. We are still waiting on muscle and nerve biopsy reports. She has to go to the hospital every Friday for 6 weeks to get the IV Solumedrol and she's on 45mg daily of Prednisone. Do you think she has ALS? I am 50/50 on it. Some days I think NO other days I think YES. Our entire family is going through a living hell right now. I need my mom with me! Thank you for letting me spill my guts and God Bless you all!
 

jpsugar123

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PS:
I forgot to mention that each time she slides downhill and then has steroids she can lift 2lb weights in her arms when she couldn't before the IV steroids. She also couldn't kick her feet up in a wheelchair like she can do now. She does repond well to steroids.
 

Al

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Hi jp. Sorry about your mom. George Washington U is a top notch Neurological teaching facility. Do they have a hospital in town that you could get your mom into for an evaluation?
AL.
 

jpsugar123

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She's being treated by Washington U docs here in St. Louis
 

ccox

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My gut feeling is "No". The fact that she improves after steroid treatment indicates something else. What, I don't know, but it sound like the hospital she's been at is top notch.
Just keep pushing for a diagnosis, whatever that might be. Have they tested her for Lyme's disease. It often comes with flu-like symptoms.
Good luck, let us know what you find out.
Carla
 

jpsugar123

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Thank you so much for your support on here, I feel like I can really get help here:)
 

jpsugar123

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I just want to mention that her antibodies came back negative and she's had every blood test under the sun. Her MRI of her head and neck came back normal and the MRI of her spine showed nothing. THis is the worst thing I've ever gone through in my life!
 

jpsugar123

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I should also mention that her Babinski sign is normal meaning the toes curl inward. She's not showing any spinal cord or CNS damage as far as that goes. I am sorry about all my little tid-bit posts, I just remember little bits and pieces at a time.
 

jpsugar123

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One more thing to add I promise! Her reflexes are normal, not brisk.
 

Debohern

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Another Daughter..........

My mom was diagnosed by 2 out of 3 neurologists with bulbar onset ALS. Her speech and swallowing has deteriorated since April, 07. She, too, gets improvement from prednisone. Her family physician put her on a sliding dose and she is so much better on higher doses. Her saliva dried up, she choked less and her speech was better. She recently got worse including cough and she started 30mg/day again and almost immediately feels better. I teased her that she and the baseball players just can't give up their steroids! She will see one more neuor at an ALS (MDA) clinic next week. Unfortunately, I work with 3 people whose loved ones have had ALS, so I've been around it quite a bit. I will keep watching your posts and praying for your mom.
 
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