Looking for some advice on possible ALS for my dad?

[Atsugi]

In one of your posts you said he had an EMG. In another, you said he was scheduled for an EMG in February. You also posted that a neurologist has diagnosed him with ALS.

At this point, a second opinion--from an ALS specialist--is appropriate. Other than that, you just hang loose. The only thing to do for an ALS patient is to keep them comfortable, pain free, and fear free. They'll need to ensure their legal and financial decisions are plainly understood and, hopefully, in writing.

 

[affected]

You need to let doctors work with you dad.

If you decide you know better and try something like strengthening a weak foot and it IS ALS, then you could hasten progression and cause him to fall and die or break bones, or receive a serious head injury. A little knowledge can be dangerous. We lose too many PALS to falls.

If it is ALS and they have been told, then they have to accept that which is hard enough to do. Let me tell you as someone whose husband had this diagnosis, it was highly distressing when well-meaning people tried to inform me of all the things it 'might be' and all the things I should 'hope for'. Acceptance was the only path through that nightmare.

I would suggest you wait it out for now and offer to be at the next appointment with them for support. You could then ask a doctor some of your questions, and get clear and definite answer. With respect, I feel you are really digging hard and may cause them to close you out if you push too hard.

 

[jasonsamara]

Thanks again for the advice. To clear things up as far as the emg goes - he had his arms done here in town back in September but not his legs. He goes later this month for a full emg and then we wait till his appointment feb. 19th. Apparently the lady in Morgantown is a ALS doctor according to what my mom says. She examined his tongue, back, arms, legs etc. maybe she is smart enough to make the call but I'm still praying for something else.

Now I did take gregs advice and actually talked to my mom today and I mostly listened, tried to reenforce my support and let her know we are all here no matter what.

So his appointment is the 19th and the 4 of us are going together. Their anniversary is the next day and I'm hoping and praying something gets us off this road and we can party that evening like never before. Again thank you for the advice everyone and I guess I am digging for anything but I'm sure I'm not the first person to do this or the last. Just please keep giving me feedback when I get a crazy idea.

 

[jasonsamara]

I hope you guys don't mind me posting so much, but I feel it does me good to talk to people and you guys are the experts. My dad went to therapy the other day and they have him doing small exercises like putting paper clips together and undoing them and squeezing different balls. He says some of these exercises hurt and I'm hoping this is a good sign, but that may just be hoping on my part. I believe they told him he has about 16% strength in his right hand. Nothing else has changed according to him. On a plus note I believe my talk with my mom yesterday was positive because my sister texted me and said she was in a very good mood today.

 

[lgelb]

Jason,
Of course, you are welcome to post any time. The hand therapy "hurting" isn't a sign one way or the other since exhaustion can cause pain depending on what kind it is. I would certainly make sure the hand therapist is aware that he has a provisional ALS diagnosis, as overuse could cause progression.

Best,
Laurie

 

[jasonsamara]

It's been a few days since I have updated on my dad. Saturday my daughter and I went out of town shopping with my mom and dad. Dad drove and seemed tired the first half of our trip. He played with my daughter and wrestled around with her at the food court while we were snacking. It amazes me how he can't button his shirt but can still pick her up and wrestle with her. He says he doesn't feel any worse. He has putty that he has to work with every day for therapy and he hates it. Especially making a clawing motion with his fingers when the putty is flat on the table. He says it hurts in a pain and fatigue feeling. My mom seems to be in a mood where she gets upset because he seems angry with God and they are ver religious. I tell her unless we are in his shoes we shouldn't tell him how to feel. They did keep their Johns Hopkins apptmnt for mid Jan and also going to a ALS doctor in Morgantown.

Is there any hope or signs that would point to mmn instead of ALS? I just wish we could know so he could get the necessary drugs one way or another. Everything about ALS is so unfair from getting the diagnosis to having to deal with it. You guys and gals on here are some very strong people.

 

[jasonsamara]

Ok so I have finally got a paper from my parents, but this is from our local Neurology Center and goes back to before he went to WVU. I'm hoping someone might be able to give me some direction as to how this looks as far as heading towards or away from ALS.

Patient was seen for weakness

Cervical radiculopathy 723.4 M54.12

The patient had electrophysiological evidence of right lower cervical radiculopathy involving mainly the right C8 nerve root and moderate bilateral carpal tunnel syndrome, there was no electrophysiological evidence of ulnar neuropathy on the nerve conduction and EMG study done at the last visit. He does have brisk reflexes in the both upper and lower extremities but does not have any definite findings of myelopathy on examination. MRI cervical spine without contrast 8/29/2016. Impression: No evidence of significant central canal senosis on cord impingement. Mild ventral cord encroachment at C3-C4 and C4-C5 levels without any evidence impingement. Right paracentral disc herniation and spondylosis at C6-C7 level with right hemi-cord encroachment and right lateral recess stenosis. Report was reviewed. The findings on MRI of C spine are not severe enough to cause his symptoms. I will refer him to neuromuscular medicine at WVU. He may need repeat nerve conduction and EMG study. Other differential may include possible early motor neuron disease, the nerve conduction and EMG study did not show any definite electrophysiological evidence of ulnar neuropathy.

Bilateral carpal tunnel syndrome
There is electrophysiological evidence of moderate bilateral carpal tunnel syndrome, he is only mildly symptomatic from it at this time. I had advised the patient to do wrist and hand stretches to help with the symptoms.

Skin sensation disturbance
B12 level was in the low normal range.

Over the past week I have seen him a few times and he has been doing regular stuff. His brother visited from out of town and this is his favorite person in the world so his spirits were high. Usually he is closed off and doesn't want to talk about it, but the other night he was trying to pick up sugar packets with just his pinky and thumb and it took him a few times but he got it. My uncle said he noticed a few times he was having trouble with his right hand and would use his left, but other than that nothing has changed. He is still going to therapy twice a week and they dip his hand in hot wax and wrap it in a towel and he LOVES that and looks forward to that because it feels good. He told me the day after therapy he didn't even think about his hand, but the next day he said he really didn't have a problem, but it was a little worse (I don't know what that means as far as limit or ache).

I would love for someone to tell me this is pointing away from ALS, but I know if it did why would he have went to an ALS doctor? Thanks for the advice and again I appreciate you all taking the time to help me.

 

[lgelb]

Jason,

It looks like the female WVU doc with the most ALS experience there is Dr. Sultan. Is that who he saw?

You worry me with the statement that you want to lead your dad away from that dx for however long you can. He's not a child and in most cases, ALS doesn't last long enough for running away from it to really work well. And yes, children do deal with their parents' and grandparents' diagnoses with this disease, every day.

As you may know, it's the EMG findings in limbs or regions where there are not symptoms yet that is most telling. So you really can't discount the EMGs to date for having omitted the leg(s), per se. Nor is the fact that his left arm is fine a strike against ALS since onset is typically unilateral (one side) in a given region. You state his right arm and left leg are affected, which would fit, though that in itself is not definitive.

I guess, having reread your posts, though having not seen any EMG notes, I'm worried that if the WVU dx is correct, though not yet with dotted i's (like the forthcoming EMG), it will hit the harder for the "anything but that" strategy you have seemingly adopted. Hoping for the best news and preparing for the worst is not a bad strategy in terms of where you are.

Best,
Laurie

 

[jasonsamara]

Well what I'm hoping for and what may be reality can be 2 different things and I'm well aware of that. Just because I hope against ALS doesn't mean I will not accept it if that is what it is.

I guess what I'm asking is, does that doctors note in your eyes point towards ALS?

Thanks for your time.

 

[Atsugi]

It says his back is old and he's got a pinched nerve. There was no evidence of ALS, but she's sending him to WVU because she didn't find the cause of his pain and weakness.

I am not a doctor.

I lived with ALS for a year, 24/7/365, from start to finish, while caring for my wife (RIP). During that time, I was reading up on the subject, talking to expert doctors about it, and caring for her, hands on.. And I've been discussing ALS with hundreds of patients and doctors daily for several years. So maybe I've picked up a few bits of knowledge.

So I can certainly be wrong. ALS is a possibility, but so are dozens of other things. My advice is to enjoy visiting your dad, stop worrying about things you can't do anything about, and pay lots of attention to your own child.

 

[jasonsamara]

My dad went and had an EMG today and they did his right arm and right leg. A different doctor performed the test and talked to him a little bit about what she thinks. He absolutely has something wrong in the right arm/hand area, but she says it could be the Ulnar nerve. The right leg has one nerve showing something going on, but she said that could be from a herniated disc. Now the first doctor he had seen told him his left foot was weak, but the doctor today said she really couldn't tell a difference between the two legs and feet and they seem fine. She told him it could be early ALS, but there is a good chance that it is something else and he would have to wait for more in depth results. He told me this EMG was much more in depth and felt like he was being shocked the whole time while being probed with a needle and flexing his muscle. The first one he had locally the doctor only used one needle and he said many needles were used this time.

So we are celebrating (a little) and I can tell the difference in his voice over the phone tonight because he has hope.

As far as his symptoms, nothing has gotten worse, but his hand doesn't seem to be getting better with the physical therapy.

I will post more as I find out and I really appreciate all of the help I have received on this forum.

 

[lgelb]

If only one nerve each in the R arm and leg are affected, Jason, that would be great news. Hope it stays positive.

 

[jasonsamara]

I talked to my dad last night and he said they did a strength test at physical therapy yesterday. He has increased his grip strength by 20 points in each hand. That gets his right hand (the bad one) up into the 90s. Of course his hand still looks bad and I'm sure it always will, but he said he still feels the same and not worse. I'm taking this as a good sign of starting to point away from als?

He has a MRI scheduled for his lower back and goes to Hopkins this month.

 

[jasonsamara]

So with dads grip strength increasing, does this start to lean away from als?

 

[Atsugi]

Post the final results of the EMG when you get them.