Could my Dad have ALS?

[artist09]

Hi,
I am writing this in concern for my 67 year old father. He has had trouble lifting both arms for several months and has complained of muscle "weakness" in his arm. He saw his doctor about it last month and was sent to a nerve doctor that had an MRI done. He goes to hear the results of the MRI in 3 weeks and is also scheduled to have an EMG done at that time. My father thinks that there must not be anything major wrong since they are making him wait so long. I am just letting him keep believing this for the moment, but I am concerned that he has symptoms of ALS and think that that might be what the doctors are looking for when ordering the EMG. I have not suggested this to him and am hoping I am very wrong. He has now progressed to having trouble raising his arms to waist level, like to shake someone's hand. I will watch him use his shoulder to help "swing" the arms up in order to assist. He also complains that "his fingers don't work right." He has no pain. His legs, feet, etc. are not effected at all and says he has no difficulty swallowing. He has experienced some twitching in his arms. I've also noticed that his arms are much thinner than they were, but his hands look the same. I just attributed it to his aging process at first. He is also extra emotional/sensitive about topics that he'd normally not react this way to. I have always known my father to be a very strong man and to see him in this condition worries me. He is a woodworker and electrician has worked with his hands all of his life and I hate to see that taken from him.

Am I wrong to be concerned about ALS? What other conditions could mimic this?
Thank you for any information you can provide.

Sincerely
A worried daughter.

 

[Ms. Pie]

There are many things that could cause his symptoms. Please try not to panic at this point. Ask questions like this when you go to see the Dr. when you go over his MRI and have the EMG. The fact that they're waiting so long does make it seem like the they're not too concerned. Maybe you could give the Dr. a call and ask him/her what they think. Good luck!

 

[trfogey]

artist09,

Piease do not attempt to figure out what your father's doctors are thinking by looking up the tests that they order on the Internet. An EMG/NCV is a commonly ordered test in many types of disorders, from carpal tunnel syndrome to minor neuropathies to disc problems in the spine.

Your father's doctors will give him a diagnosis when they have all the information that they need to make the proper call. I suggest that you do the same and wait until your father has a diagnosis in hand before you start searching the Internet. At least at that time, you'll know what you should be looking for, instead of stabbing blindly in the dark and frightening yourself and your other family members and friends with what you find.

Good luck to you and your father.

 

[artist09]

Thanks trfogey. It was actually a nurse that suggested that to me that it might be ALS. At the time I was researching ALS I didn't know he was having an EMG. He just told me about the EMG this morning. And of course, I had already read about them. My father did have back surgery in his 20's. I have considered that it could be a spinal issue. I am going to try to move the EMG up rather than having to wait 3 more weeks. You are right, I shouldn't worry so much especially since he isn't.

 

[Ms. Pie]

The nurse is an idot and had no place or right to say anything like that to you.

 

[artist09]

The nurse wasn't at his doctors office.... just a family friend that recognized some of his symptoms as being those of ALS.

 

[trfogey]

Your father's symptoms are what they are and unless your family friend nurse is an expert in neurological diseases and all things related to them, it was a cruel and uncaring thing for her to do in suggesting that your father might have ALS. Sort of like observing a couple of lumps under his skin and suggesting that he has widespread metastatic cancer -- the worst case of many possible options.

Not kind and not much of a friend, in my opinion.

 

[artist09]

Well, the nurse didn't tell me directly. She told my aunt, who in turn told me and then later my aunt realized she probably shouldn't have told me and said she was sorry she mentioned it. But, I'm glad she did and this is not what I wanted my thread to be about. That part is done...right or wrong. It does give me something to question the doctors about and prepares me a little for what the outcome could be. Most everything else will be good news. But, I've also learned from this board that you can live with ALS and I will do everything I can to help my Dad if he does have it. I just posted so that others could let me know if these symptoms were classic ALS or if there are lots of other things it could be so I will have other things to ask the doctors about or other symptoms to look for. My Dad is a very quiet man and he may not tell the doctors everything unless they or I ask him about it. I learned his symptoms by asking him tons of questions about exactly what he was/ wasn't feeling. I know only a doctor can make a diagnosis, but I just wanted a little hope from all of you I guess. I thought that is what this portion of the forum was for.... To ask questions.

Symptoms
1. Started with arm weakness.
2. He has twitching and spasams in arms.
3. He can't flex arm muscles that seem to be effected.
4. Atrophy in arms, but not hands
5. says muscle use is worse in the mornings. (this one gives me some hope)
6. hands are difficult to use.
7. He has NO pain, NO tingling, and NO numbness or loss of sensation.
8. He says he has no trouble driving, but things like getting his wallet out of his back pocket are difficult to do.
9. No problems with his legs, throat, or other muscles. Just arms and hands are effected so far.
10. All of this has happened in the last 5 months. Prior to that he was as strong as my 33 year old husband.

 

[notme]

HI

Please remember the large majority of those that answer you do have ALS--so they don't like to see people scared needlessly.

That being said--I can see where your friend was coming from--especially if her goal was to get someone to go be checked out. Though perhaps those the letters could have been avoided--as you said, what's done is done.

Now to what you asked--yes there are other things that could cause these symptoms. Neuropathy is the biggest one. It's not that uncommon in someone his age either. I'd be more concerned if the weakness was in his hands and the 'seems smaller' symptom was in his hands.

Usually with ALS the symptoms seem to begin distal--so hand, then arm then shoulder....or feet then legs... Not always, I realize, but usually. He's getting older--there are just a lot of things it could be.

If your dad approves, ask to go with him to the next appt. and ask the questions you want to ask. Try not to worry unless you have something to worry about. If his legs are unaffected, he's in no risk of falls, I'm guessing. His breathing and swallowing aren't an issue. There's just no reason to "rush" them to a diagnosis if there are no 'safety' issues you're concerned about.

If you will feel better researching--research ALS Mimics to give you some comfort.

Best wishes for you all

 

[Chase_Corin]

Your father's case sounds simmilar to my father,

however I am not a doctor nor should you take my opinion as gosphel.

symptoms, 1,2,3,4,6,7,9 seem to be the same however my dad's weakness gets worse as the day goes on, he also gave up driving when the weakness became enough for him to question his ability to react fast and strongly enough, he also found the more tactile involvement he needed the harder things were like getting wallet out of pocket, picking up change off a counter etc. My father however already had some spinal damage and was not as strong as yours was prior to his symptoms showing up.

I urge you to see a doctor for some testing for your father, a Western Blot test should be done that should rule out lyme and heavy metals along with some other diseases that may cause such symptoms. If your doctor dosn't think it is nessessary insist, your father's health is worth pissing off a doctor.

I am 33 and my dad is 65, he was diagnosed 3 days after his birthday so as one concerned daughter to another. Tell your dad he needs to be proactive and persue this until he gets some answers, weather they be good or bad.

 

[artist09]

Thanks Chase and Notme. My father lives alone and an hour away from me. I am concerned about his safety simply because he is alone and he is not the type to ask for help. Whether it is ALS or not, he has an issue and it is effecting his daily life and ability to care for himself. He has been hiding his symptoms for a while and I'm not sure he'd tell me about any new ones. His EMG is scheduled for June 14, but I am going to try to get it moved up. And, yes, I'll make sure they test for lyme and heavy metals if they haven't already. (They did a blood test at his last apt, but he doesn't know what they were checking for.) My brother-in-law is a pharmacist, so he has some limited medical background and had suggested the lyme and heavy metal test too. I will be going to all of his appointments from now on and I will make certain the doctors are proactive. Thanks again.

 

[notme]

Your father's doctor is perfectly correct in not saying "it could be this, this or this" as most people will over look the THis and This if the third one happens to be ALS. Ms. Pie, Chase and trfogey have given you some great advice.

People tend to focus on WORST CASE scenario. Not good for them or their family. SHOULD he eventually be given that diagnosis--that's horrible--but even thinking that's what it is can be just as bad for those around him in the interim.

I heard those letters and freaked out--It seems better at first to know what areas they are thinking--but the diagnostic process can be long--it's just added time to wonder. Much better the doctor isn't saying anything until he knows. It is to avoid undue panic to you and your father.

yes, he needs answers--but please don't assume the most deadly conclusion--there are many, many others as trfogey and others said. Many are treatable.

I had an NCV for carpel tunnel. An EMG 20+ years ago for a bad disc--so as said, they are ordered for a LOT of reasons and can diagnose a LOT of things.

Keep positive. Perhaps he'd come stay with you for a while if you're really that concerned about his safety--but he's an adult--and not that old--he might not like the idea at all!

Keep us updated.

 

[trfogey]

artist09,

When you put a post up on this board, sometimes it doesn't go the way you planned for it to go. That doesn't mean that the unexpected diversion wasn't something that you needed to hear and I hope you heard it.

That having been said, the list of symptoms you give in your previous post is simply too vague and undefined to give you any better advice than "wait and see what the doctor says." Doctors don't diagnose ALS by checking off the boxes on a list of symptoms. They diagnose it by verifying the presence of a particular disease process that has a particular method of action. It takes time to identify the process and and eliminate all other possible causes for it. It takes even more time to determine that the process is progressing in the area of origin and spreading to other areas of the body.

So, don't expect to get an answer about what's wrong with your father at the next visit. You may get lucky and get a diagnosis and you may not. You don't even need to bring up ALS unless the doctor mentions it first. It's your father's condition, not yours, so let him ask the questions. Your "need" to know doesn't trump his desire to not be concerned about it.

If it is ALS, there's nothing that can be done about it (or will happen with it) immediately anyway, and some folks need a period of denial to adjust to the reality. Don't rub his nose in it just to satisfy your curiosity.

 

[artist09]

Yes, all of this is true. I don't expect to get a diagnosis at the next visit, and if I do, I'll get a second opinion anyway. If they want to run more tests past the EMC, I plan to take him to Vanderbilt in Nashville rather than stay in our small city for diagnosis. Vanderbilt is known to be the best in TN and if by chance it does turn out to be motor neuron related then they have a center there. I am going to try to stay positive and I'll post an update after we get more answers from the professionals. Thanks for putting things in perspective for me.

 

[artist09]

He had the EMG done today. It doesn't look good. It showed signs of loss in his back and legs too although Dad can't tell that those areas have problems. So, it is progressive. The doctor is saying it could be ALS or Kennedy disease. (I didn't bring either up.) He has ruled out Neuropathy. He is having a genetic test for KD and we will know in 2 weeks. He is also going to test for mimics, but I got a feeling from the DR. that he suspects ALS or KD because he didn't talk about the others...just these two.

Labs ordered:
Kennedy DNA test
Paraneoplastic Auto Lab
RPR
Lyme Disease.