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lgelb

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The shoulder joints often subluxate in flail arm. The muscles that hold the shoulder joint in place become weak to non-existent early.

To try to avoid that, you can try a GivMohr sling, avoid any range of motion exercise where the shoulder and elbow are not supported (like lifting the arm straight out, bending the elbow in and out; these are good but you have to support the shoulder, actually mildly pushing it back toward the spine, and also hold the elbow while he or you is doing the exercise), and gently push the shoulder joint toward the middle of the back to "reconstitute it."

A PT familiar with flail arm syndromes can help. Once the diagnosis is formalized, you can ask his doc to write an order for home PT to help you set up a regimen.

My husband's shoulders subluxated early on but it was still essential to continue all of the above precautions to avoid further joint damage (except the sling which didn't work for him but might for your dad since he's at an earlier stage).
 

Mon

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Thanks Laurie. Great info. Im going to make an appt with a PT who is familar with neuro degenerative disease. There really is no reason to wait for final diagnosis.
 

lgelb

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The thought to wait for the dx relates to reimbursement -- I don't know that you will get insurance authorization for PT with an MMN provisional diagnosis.
 

Mon

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Thanks Laurie, i thought ypur suggestion was related to insurance purposes. Thanks for thinking of that. I am pretty certain when my dad retired his insurance became extended as part of retirement. Physiotherapy is often included for any type of injury or diagnosis that it could be beneficial for in private insurance. Ive sent the GP a note that we need a prescription for physio due to shoulder pain which he is aware of. Hoping that can help until we get back into the als clinic for diagnosis.
 

Mon

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I forgot to add, we had some good news this week in Canada, that Amylynx is asking Health Canada to approve AMX0035. Sounds hopeful/ promising. What do you all think?
 

Mon

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Hi everyone,
We still dont have a firm diagnosis and we stopped ivig due to a severe skin reaction 6 weeks ago. The treatment was done for 2 months and it didnt help at all. The covid 19 situation in ontario is not good and we are currently feeling like we are falling through the cracks. Our gp is handling things for the relentless rash that has occured along with feeling cold all the time. My dad is on a second coarse of oral predisone and quite a bit of antihistimine. In the past 6 weeks, my dad is experiencing further weekness in his arms and im concerned the ivig made things speed up, Is this possible? Also is predisone ok for als patients? I realize these may be questions for a neurologist but we cant reach ours and we are not a part of clinic with diagnosis. I welcome any info or experience anyone might have. Thank you.
 

lgelb

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I don't see how IVIG would have sped anything up but in truth we don't know everything that does. It is a progressive disease so we would expect to see changes over time.

Glucocorticoid compounds like pred have been studied in ALS mice models and in uncontrolled human experiments. The consensus, most recently expressed by an ALS Untangled report, is that they will have no effect one way or another. But since they have their own side effects, like sometimes causing headaches, high blood pressure, and so on, it is normally considered best to use them only long enough and strong enough to address the problem they are being used for. Is the rash getting better? Did feeling cold start with IVIG or the steroid?
 

Mon

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Thanks for your reply, appreciate it. Rash is on week 6 just about. He is going to see a allergist/immunologist for opinion. Its showing a bit of white in between the red, so maybe slight improvement but at same time it just showed on his face. He looks a bit puffy, could be meds. He is always cold, with chills. The chills have been worse while on steriod but he definately has felt cold more so since symptom onset a few years ago. Id say feeling cold has progressed as has the atrophy and loss of function in arms.
I wanted to say, i find this forum to be a support for me and i thank everyone.
 

Mon

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I wanted to update everyone. My dad has been diagnosed with Frail arm ALS. It is official now. Ivig failed and specialist at clinic confirmed. They ran tests to make sure he is ok for medication. Its been a long 2 years. Thanks to all.
 

Nikki J

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Sorry that it ended up this way. Hoping for a continued slow course
 

Bestfriends14

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I'm so sorry to hear this news, Mon. You're a good daughter for being with your dad every step of the way through his diagnostic process. Please don't hesitate to ask any questions you may have.
 
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Mon

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Lol..im.actually a daughter. Thank you. Im gonna walk this with him. Feel heartbroken, hope it gets better.
 

Bestfriends14

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Oops, my apologies! Big hugs to you ❤
 
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