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jb63

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Joined
Dec 13, 2011
Messages
164
Diagnosis
12/2011
Country
US
State
NY
City
Long Island
My neuro/muscular doc has turned me over to ALSA for follow up care, appt next week.
I understand now why there are so many questions, as I had an intellectual discussion about MNS even brought my husband and my head is still spinning. I am sure my questions will be answered when I meet with the clinic. In the meantime, nobody has given me a booklet on how to be a MND patient. The last month has been a forum search. Life has been chaotic.

My questions:
My internest said I had some lower back atophy (look like my bony old back to me) but it seem to explain some symptoms I have. Correct me if I am wrong.

I tilt over when sitting. My son was trying to assist me int bed and picked up my legs, not high, but I flopped backwards into what felt like a back bend. I am in agony at my tailbone. Pain not from MND.

I hold on to a rail when sitting on my bed to keep from falling forward. I do not feel my upper back is affected. I can lean and turn from side to side without using support in my chair and a bit of assistance when in bed. I cannot stand or walk because my lower back gives out. Forget turning in bed using the lower back, it is screaming pain and needs support. I have supports under my knees to prevent strain but it does not help.

Is there a support that can be worn either over or under clothing? If so, are they helpful? Can you sleep in it.

JB
 
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