Status
Not open for further replies.

jasonsamara

Active member
Joined
Oct 13, 2016
Messages
31
Reason
Learn about ALS
Country
US
State
Maryland
City
Cumberland
So my dad is 63 years old and really has had no health problems that I know of other than blood pressure. He started having trouble with his right hand about 2 1/2 months ago. He thought nothing of it and waited until his physical a few weeks later. So the doctor said there was something wrong with his neck and sent him for a MRI. This resulted in 2 bulging discs in his neck. So when he went for a follow up his GP said this was not his problem and said the dreaded letters "ALS". So now my mom is losing her mind and he doesn't have an appointment until the week of Thanksgiving with a specialist.

He has no pain an no symptoms other than he finds it difficult to write and has problems with applying enough pressure to the pen. Now last night I was helping him remove siding off his house and he was hanging off of a ladder and using his right hand a good bit and seemed to have no issues. It's not getting worse, but not getting better. He was also told he has carpel tunnel. I appreciate you guys helping me with any advice. Thank you.
 
As I'm sure you know, ALS is a terminal illness. You do not inform a patient that they have a terminal illness until the proper tests are performed to rule out all the other illnesses that it could be. Also, a Neurologist, who hopefully specializes in ALS, will need to send your father for blood tests, MRI's and EMG tests beforehand. The Neurologist is the person who does the diagnosis - not a GP.

I know how it feels to wait months to see a specialist. I had to wait many times.

It's going to be rough, but hang in there, and keep positive thoughts.

Hugs,
Deb
 
Whom does he have the Thanksgiving week appt. with? Did he have tests other than the MRI? I agree that this seems strange. Carpal tunnel can certainly cause hand issues. Was PT recommended?

Best,
Laurie
 
Sorry I have never responded . I guess I'm just trying to hope for the best and I really just don't want to think about the what ifs. For some reason he made an appt. with a Dr. in Morgantown, WV and now is trying to change to a place in DC. My mom already has a wheel chair and a chair lift and is way over reacting. She says his family Dr. said his reflexes are over reacting for instance when you hit the knee his leg kicks way up and she says this is a sign?

All I know is my mom acts like it's 100% and my dad acts like it's not even on his mind. I do know he still has trouble with his right hand, but this is the only sign. He can't button his shirt anymore. His hand has curled somewhat, but I don't see any signs of muscle loss and he has lost no weight. Just tense times.
 
It's hard enough to find a neurologist who is familiar with ALS

Unless your family doc is an incredibly skilled GP, don't get in a tizzy.

Go to the specialist.
 
I agree with that statement. Thanks for helping me.
 
So my dad finally made it to the specialist today. They said it's possible that it is ALS. He has muscle loss and his right hand is weaker than the other one and one leg is a little weaker than the other one. He still says nothing has changed since he started having problems in August. He has not lost weight and will be getting a special spoon and fork to help him eat. He goes for an EMG in Feb. now and the Doc said there is no rush. Is this right? My mom will be 100% convinced now that is what he has and I'm looking for anything else to cling to.
 
If they said "possible ALS" the February date is unreasonable.

Press for sooner. Try for Johns Hopkins. (My alma mater)
 
Agree. Even if it takes that long to get in elsewhere I would be looking to switch doctors. Hopkins has superb ALS diagnosticians. Aside from anything else saying possible ALS and then making you wait that long is cruel. There is no cure as we all know but earlier riluzole is felt to be more beneficial and he may need a diagnosis for ssdi. If he is a vet there are benefits too. Not to mention advance planning
 
Last edited:
I was just talking to him and he showed me his hand. The area between his thumb, pointer finger and wrist has a very noticeable depression. Also he can't pull his pinky against his ring finger. He has barely any strength when touching pinky to thumb or ring finger to thumb but does ok with the other 2. Also he still has good grip for shaking hands, holding drills etc.

I mentioned Johns Hopkins but he says it doesn't matter. I'm gonna keep on him but this is tough.
 
Hopkins or UM, certainly. Or Hershey or Pitt if those are easier. Best to pick somewhere he might want to visit again in the future.

Not sure why he says it doesn't matter, but maybe point out that his wife/your mom deserves a definitive answer for her own sake.
 
This is tough. I talked to my mom about it tonight and she is just 100% sure and when I argued a different opinion it got a little tense. I told her until the Dr. comes out and says "you have ALS" then we need to hold out hope that it is not ALS. He had an EMG and will have another one in Feb. I told her lets go to Johns Hopkins, but they were told JH's will do the same tests. There again it's not my body and I can't make them do what they don't want to do.

As I stated in an earlier post my dads right hand has a big cavity between his thumb and pointer finger going back to his wrist. It feels like a skeleton with only skin and no muscle. What else could this be? Also this is his right hand and the Dr. said he has lost some strength in his left leg. I guess I'm just looking for another road to go down because we all know where this one ends. Thanks for all the support.
 
He already had an emg? When and what did it show? February may be an appropriate time for a follow up then. I have been told at my clinic when they are following someone the usual interval is 6 months- occasionally 3 months. Who did the emg?
 
I was told tonight he had an EMG. Maybe this is what I thought was a MRI back a month ago. It's hard to get good answers and just to find out what I posted is was an all out drama fest ending in my mom breaking down, but my uncle was there and saw that I'm not being mean, I'm just not giving up.

I just can't explain the hand.
 
Trying to provide the right details so I can get the best feedback from this group. I talked to my dad today and he had a emg mid September and everything looked good except for his right arm. He has no pain except when he writes for a new extended amount of time. He says he just takes an aspirin or something and it goes away.

Yesterday he went to wvu and saw a specialist and they tested his strength. Of course his right hand has problems. His right hand has a very noticeable depression or cavity behind his thumb and pointer finger. Like bone and skin only. If he stretches hi fingers out he cant pull his pinky against his ring finger. Also the doc said he has weakness in his left leg. He could not prevent her from pushing his foot down. I'm not sure what else to say but I just can't get over his hand. I want to be strong for my family but it's very tense. Thanks again for the advice I know from reading a lot on here just about everybody already has their plates full.
 
Status
Not open for further replies.
Back
Top