Worried about my father

[smirish13]

Good evening. I think my father has a form of ALS. My father is 65 years old. About 8 months ago we started to notice that his posture was getting worse & he was having difficulty holding his head up straight. We went to our PCP who said he had spinal stenosis. This past week my mother took him to a spine &back surgeon & the Doctor said that my father needed to go to see a neurologist. We have made the appointment now frantically waiting. My father cannot hold his head up at all. His muscles have atrophied in the back of his arms, neck, shoulders & throat. However he can walk & his legs remain strong. His hands are cold & they twitch sometimes. He is experiencing increased difficulty breathing & swallowing, & he chokes sometimes as well. He has good strength in his lower body, he does not trip or drop things & he still has some arm strength around the biceps. His head cannot be upright w/o immense pain. He can no longer project his voice & is losing weight rapidly

 

[laurel]

Smirish it does sound like your father needs to see a neurologist. His inability to hold his head up straight is a classic symptom of Myasthenia Gravis. His other symptoms could fit as well. There are so many rare neuromuscular disorders out there so it is hard to know without a good neurologist who specializes in these disorders. Good luck. And let us know how things go please.
Laurel

 

[smirish13]

Thank you for your response. There are so many rare and obscure Neuromuscular disorders I am trying to research as much as possible. I have not really noticed the droopy eyelids in my father but he is certainly having increased trouble breathing and swallowing. The rapid rate of atrophy in his arms, neck and back is extremely scary. Just nine months ago he looked like a healthy 60 something year old man now his neck and posture and arms look like those of an 80 year old. Like so many others going through the diagnosis period I am just searching for answers and trying to make sure that I know as much as possible so the DOctors do not miss anything. Thanks again for your reply.

-Sean

 

[Moonmark]

Hi Sean-

I am sorry to hear about your dad. I see that you are in Boston, Mass. I don't know where you have made your appointment, but Mass General Hospital in Boston has a very well regarded neurology department and ALS center. I bet if you called there and explained your dad's condition, they would try to get you in sooner rather than later. Contact Samantha Bright, the coordinator of the clinic at [email protected]. Phone: 617-724-3914.

you may already know that MGH is a teaching hospital for Harvard University Medical School and I am sure they will be able to help you figure this out.

Good luck--

Sandra

 

[smirish13]

Does anyone else have any other opinions on this -- or know of any solid resources either on line or at the local library. Thanks again.

-Sean

 

[laurel]

Thank you for your response. There are so many rare and obscure Neuromuscular disorders I am trying to research as much as possible. I have not really noticed the droopy eyelids in my father but he is certainly having increased trouble breathing and swallowing. The rapid rate of atrophy in his arms, neck and back is extremely scary. Just nine months ago he looked like a healthy 60 something year old man now his neck and posture and arms look like those of an 80 year old. Like so many others going through the diagnosis period I am just searching for answers and trying to make sure that I know as much as possible so the DOctors do not miss anything. Thanks again for your reply.

-Sean

You're welcome Sean. I think they are different types of MG. One is generalized MG with weakness in the trunk, arms and legs, and the other is ocular MG. I am hoping for MG versus ALS.
Laurel