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buschclub

Member
Joined
Dec 1, 2008
Messages
16
Diagnosis
12/2008
Country
US
State
nc
City
charlotte
hello again i have a confirmed diagnosis of als since 12/08 it has progressed but very slowly. I am now 30 years of age and i have some unusual problems. i have right shoulder drop big time. also alot of atrophy shoulder area and this is creating pain in the shoulder and neck area. my mri's are fine. also i find i am very short when i talk to people as if i don't have the air.. i also have knee pain my quads have so much atrophy the knee bone comes right out. the docs say this is because no muscle to hold it. i can still walk so this hurts anyone with simular symptoms before wheelchair or currently..i know these sound atypical for what i have seen.. but diagnosis is firm 1st johns hopkins then 2 more confirmations.

thanks
buschclub
 
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no muscle in the shoulder area severe atrophy
 
yep, shoulder drop and neck pain.....get one of those neck wraps you can warm in the microwave. it helps. and remember, elbows on the table
 
thanks for the info. do you also have a hard time with posture i am humped over like an old man...no offense to anyone but i am a young man..but my body feels and looks literally like 80. but my mind is still 30!
 
I'm having shoulder problems due to atrophy and have a physiotherapist working on it last 2 weeks and it seems to help somewhat.

AL.
 
hello and thanks for the answer. i go to phyisical and occupational theropy 3 times a week. it helps but still some pain. though it is better.
 
My husband also has a torn rotator cuff, that we now believe came about due to his muscles weakening, and he continued to do very hard labor, as we didnt know he had ALS. He has had a couple of steroid injections into the shoulder, and this has helped tremendously. He can only get 4 or 5 shots a year, and the last one was the first of Nov, and is wearing off now, but we need to wait a couple more months to get another one. His back pain has also gotten a lot worse, and we are scheduled for an epidural injection in 2 weeks. We are waiting for the VA to set up PT. I will let you know if anything helps. He is currently on 60 mg of morphine a day for pain, and we want to cut that down, so hopefully these measures will help us do that. He also has a TENS unit for his back. Lori
 
My husband also has horrible shoulder pain-actually it started about 2 years prior to his Bulbar symptoms...he is currently going to PT twice a week for therapy. Welcome to the forum buschclub.
 
thanks for your time its nice to know this is not such a rare thing. thanks for the answers and comments..
 
Being hunched over like that is something both my dad and I have. But since ALS took over my dads life, he has much much worse posture. His head and neck are very very far forward. He has not complained about any pain yet. Although, I do have the pain there and I dont have ALS. Weird huh. WELCOME TO OUR FORUM! Please feel free to come here anytime to post, or create a thread. We are here for a shoulder to cry on, or to get as much information as you can handle! Hang in there!
Hugs, Blu
 
Sorry about your shoulder problems! Have you tried having them taped? Whenever my husband's shoulders are in a lot of pain, we have used Kinesio Tape. You can buy it online and the instructions can also be found online. The PT at Clinic thought this was a good idea. Maybe you can discuss this with your PT, as it does help my husband when he needs it. (And the tape comes in cool colors!)
 
Weirdly, the very first symptom I had when no-one would have dreamed of ALS was a huge drop of the right shoulder. But hey! now I am hunched over (unless I make a huge effort and I keep forgetting) you cant notice the shoulder drop and it is not as bad as it was. And yes, my shoulders hurt nearly all the time.
And as for "i am humped over like an old man...no offense to anyone but i am a young man" - well I am an old lady but can now say I have the postureof a young man - dont need to say which one;-)
Love to you
Irismarie
 
hi thanks for the tips nice to see that people have a sense of humor. i will try the tape and let you know how it did for me thanks..
 
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