Status
Not open for further replies.

Tx Daddy's Girl

Distinguished member
Joined
Jun 2, 2013
Messages
137
Reason
Loved one DX
Country
US
State
Tx
City
Beaumont
We've been to 3 doctors who are, thier words, "pretty sure" he has ALS. my dad is 62

Back in January dad could not get his BP under control, he averaged 178/125 and since he has had a mild stroke and mild heart attack in his late 30s, early 40s. Come February he began having some cramps and the twitching in his biceps began. His PCP did blood work in March and referred him to a neuro for an EMG. During this time my dad had a detached retina and had to have surgery and he already has macular degeneration and barely sees as it is. April 22 @ 8:30 was his appointment and I told him how to get there and that he might see me in the building (I'm a marketing rep and call on physicians). At 10:30 I went to that office for a service call and notice my mom still in the waiting area. I went to speak to the office who told me he was still in the room. At that time my dad came out and asked my mom and I to come in and listen to the dr. The Dr said it could be related to his neck surgery but he thought it was something else, I blurt out, "is it Parkinson's?" thinking that was as bad as it could get. He said, "no, I think this is different, do you want me to say it?" "Yes," we blurt out. "I think this is something called ALS or Lou Gherig's," he said. All the air left the room and my dad and I looked at each other and started crying because we knew what it was, my mother did not do he described the horror for her. The dr did not even do an EMG but referred us to Houston (dr. shaibani) and he sent dad home on mumscle relaxers. In the meantime he had an MRI and we scheduled an appointment with his neurosurgeon praying it was related to his neck surgery. The next week my husband and I took my daughter to Disneyworld - I'm probably the only person on earth who was unhappy at the happiest place on earth. I was constantly checking in on dad and had mom crying telling me he was doing wills, power of attorney and getting stuff in order. The next week we were back and I took dad to his appointment and within 5 minutes of looking at his MRI he told us that it wasn't his neck and his reflexes did look like ALS but we had to get to Houston. The next 4 weeks were filled with my dad calling and telling me things he wanted to do with my daughter before he died, how he begged me to get him some antidepressants and without his better judgement, buying my POS brother a house - pd cash, about 50k. At his appt with Dr Shaibani it was odd to say the least. I talk to Dr's on a daily basis and he is one of the coldest, most arrogant, I've ever met. Without a word he went about his assessment, having dad push and pull and saying "weak" "weak" - hewalked out and had my dad undress, came in and had a man recording my dad without explaining why, then excusing my mother and I to do the EMG. Upon returning my dad said he couldn't see well but some looked normal and some didn't but the dr never said. He came back in and told dad he wasn't sure it could be BFS or ALS but looked more ALS. He ordered blood work and some test which all I can assume was a genetic test, and to get off the muscle relaxers and come back in 3 weeks. My dad *****ed about the $500 for the special test. We went home with a little hope. The next few days my dad felt great, sounded great, not high on muscle relaxers. My dad exclaimed he was never taking them again. Then 2 days later, last Friday, he couldn't sleep because everything was twitching, my dad said "everything but my balls" - the next day he left his job. Today I called and checked on him asking how he was and he told me he slept some but he also told me that when he makes a fist with his right hand he can see on the right and left side of his forearm "indentions" where he has lost muscle. I'm crushed. I want to scream. I'm 34 - I shouldn't have to take care of my dad. He is still the strong man that is supposed to protect me.

I realize we don't have "the diagnosis" yet but once I heard him tell me about his muscle I think we both knew. My mom told me he asked his church to put him on the prayer list today he has had to stop serving communion and put in his notice at work last week. He is retired from the postal service but works a few days a week at a lumber yard because he can't sit still. He's told me he doesn't want to have to depend on anyone and "your momma can't take care of herself, your brother can't take care of himself and who is going to take care of Caden?" (my brothers son). He's right, at 38 my brother is not my concern - he will help my dad as far as fixing things but that's about it. My mother is 5'3 and about 300lbs - she won't be able to help my dad even though my dad is petite (5'10, 155). They live an hour away but are talking about moving back here into a townhouse.

I can handle my dad dying, it will kill me, but I'll accept it. What I can't accept is him suffering. I find myself praying that if he does have it that it is quick so that he doesn't suffer. He's already said no feeding tube or vent.

I'm sorry this is so long. I've looked at these forums for a month praying I would not have to join. Please pray for us.

Thank you,
Lori
 
Lori I am sorry you are facing this. Until the follow up visit though try to have some ho pe. Did the last doctor think the muscle relaxers were interfering with the clear interpretation of the EMG? BFS or ALS is a pretty big difference!

Have his symptoms gotten worse since February? You said twitching and cramps in biceps?

Try to take one day at a time. Let us know what happens at the next appointment

Take care
Nikki
 
Hi Lori, I am so sorry that you find yourself here. I was diagnosed a month ago. I also live in Texas but I went to the ALS clinic Dallas. Dr. Heitzman is the ALS specialist at Texas Neurology. I really like him. He is very caring and compassionate. Just in case you want another doctor or another opinion for your dad. Will be praying your family.
 
EMG is one of the most important tests when trying to make a diagnosis of something messing up with the nerve pathways.
If there is some problems with the Doctor trying to interpret the EMG results, then it might be either something interfering with the results or the person who ran the EMG has problems interpreting the results.

In any case, if I were you, I would go to another Doctor to get another EMG and compare it to the previous ones performed on him.

Good luck to you and I hope that whatever your father may have is not ALS but something benign and treatable.

NH
 
Lori I am sorry you are facing this. Until the follow up visit though try to have some ho pe. Did the last doctor think the muscle relaxers were interfering with the clear interpretation of the EMG? BFS or ALS is a pretty big difference!

Have his symptoms gotten worse since February? You said twitching and cramps in biceps?

Try to take one day at a time. Let us know what happens at the next appointment

Take care
Nikki

Yes and no - it was about the same from Feb - Apr 22 when he was put on muscle relaxers and naturally things got better. When he came off the relaxers he was the same for 2 days the, according to him, everything twitched - he said it felt like someone rubbing his hands all under his skin and the back of his head. He said it was a little better yesterday. I don't know if ALS twitches come and go but his twitches are large twitches, not fine.

Also, he's had issues swallowing since his neck surgery but it's stayed the same for 3 years so I don't really think that's an issue - the went through the front of his neck so I understand why he said he had to re-train how to swallow.
 
EMG is one of the most important tests when trying to make a diagnosis of something messing up with the nerve pathways.
If there is some problems with the Doctor trying to interpret the EMG results, then it might be either something interfering with the results or the person who ran the EMG has problems interpreting the results.

In any case, if I were you, I would go to another Doctor to get another EMG and compare it to the previous ones performed on him.

Good luck to you and I hope that whatever your father may have is not ALS but something benign and treatable.

NH

He has only had the one, our second is on the 19th
 
Also, we were under the impression the DR wants a second EMG because the muscle relaxers interfered but now my dad thinks it is because he wants to see if his strength improves
 
He has only had the one, our second is on the 19th

Good luck with his second EMG.
Let's hope it's just something minor that can be easily treated.
Keep us posted on how this second EMG went.

NH
 
I have had several EMGs while on muscle relaxers (Zanaflex) and the doctors never said it was an issue.

I have had 6 EMGs since October and they have been all over the map, from normal, to peripheral neuropathy, to possible ALS, and then finally to a myopathy.

My point is, I would definitely get a 2nd opinion.
 
I have had several EMGs while on muscle relaxers (Zanaflex) and the doctors never said it was an issue.

I have had 6 EMGs since October and they have been all over the map, from normal, to peripheral neuropathy, to possible ALS, and then finally to a myopathy.

My point is, I would definitely get a 2nd opinion.

Great news! And yes, I want my dad to see Stan Appel in Houston - I hear he is one of the best ALS drs.
 
Well we followed up with my dads local neuro and is 99% sure it is ALS but wont make anything official for 6 months. My dad has lost 6lbs since 4/22 and has some wasting in his forearms. I do think a lot of the weight loss is due to him not having an appetite because of the depression.

Emotionally, we've been okay. We are all on the same page on Quality of life vs Quantity. I just don't want him suffering, I can handle him dying but I can not handle him suffering.

One thing that upset me today was that we openly talk about the end so nonchalantly now - its a double edged sword, it's good to talk about it but I hate that it doesn't choke me up anymore. Wierd.
 
I can really identify with what you are saying...
my husband is my PALS and I can pretty much accept this will take him out, but the path of suffering and loss for him to get there is what tears me apart.
We too find ourselves talking about the end almost nonchalantly and it is a very weird feeling.
We went to solicitor yesterday and fixed up wills, power of attorney and enduring guardianship, and advanced health care directive and it was truly weird how easy it was to just go over the documents, agree it met our requirements and sign away ...

For me there is a real mix of horror reality and total surrealism in all of this. We are fairly newly diagnosed too, though I'm not sure it's going to feel much different in time at all.

I do sincerely hope that your dad falls into the 1% chance it is something else!
It is great to be able to talk openly here about the way we all feel as it is hard to describe to anyone else, but just a few words here and I *know* just what those feelings and fears are like.
 
I am sorry to hear this. Did they already do the follow up EMG? I thought that was next week? Or is it based on clinical exam and upper motor neuron findings? Are you seeking a second opinion with Dr Appel?
 
I am sorry to hear this. Did they already do the follow up EMG? I thought that was next week? Or is it based on clinical exam and upper motor neuron findings? Are you seeking a second opinion with Dr Appel?

The follow up EMG is on the 19th but my dad might cancel it. due to the UMN findings at his regular neuro appt and the First EMG that stated no denervation but most likely MND they are fairly certain it is ALS. Dr. Shaibani was also an ass.

I would like to go to Dr. Appel but my dad is very comfortable with His local doctor and my dad wants to stick with him. I'd love to force him to go but he won't. Maybe later, we will see.
 
It looks like very few ALS Neurologists have some bedside manners.


NH
 
Status
Not open for further replies.
Back
Top