konagirl
Active member
- Joined
- Oct 16, 2015
- Messages
- 56
- Reason
- CALS
- Diagnosis
- 04/2016
- Country
- US
- State
- FLORIDA
- City
- Jacksonville
Hi there. Figured it is about time I stop stalking this forum and finally make a post. You are all amazing and brave people, I am hoping for your insight. I am hoping you can provide me with some encouragement. I have come this >< close to posting at least 10 times in the past two months, and backed out every time, afraid of what I would hear. But I’m ready. I think.
I apologize in advance, I will probable type too much and ramble on. I am 35 years old. My husband of 11 years is 36. We have an 8 year old boy and a 2 year old girl. He is my soul mate, my best friend and the best father I have ever known. We truly have a happy life. Had? Have? I don’t know. This all started in July. My husband is an avid wakeboarder. He is extremely coordinated and balanced and can do pretty much anything. At 36 he can still shred on a skateboard better than most teenagers. He and our son ride 4 wheelers and dirtbikes daily. He is a very active man, we are a very active family. In July he started noticing some problems with his legs, he told me “they keep locking up on me, it’s weird, it’s like they get stiff and I feel like I am walking like a robot” This happened occasionally but it was not all the time or even every day. Around this same time he started having issues with his left hand. He was having a hard time doing small things like taking the cap off the toothpaste. He noticed it most in the morning and at night, he said it seemed to get better during the day. Unlike his legs though, this was every day. I told him he was probably just sleeping on it wrong. There was never any tingling, numbness or pain though, just a weakness. He went to our primary care Dr and they ordered an MRI, this was Mid-August. By then, his leg episodes were getting more frequent and he was losing his balance a lot. Dr ordered a lumbar and a cervical MRI. He had these done August 28th. It was around this time I noticed the twitching. Constant fasciculation’s that ran from his shoulders to his elbows in both arms….and never stopped. Early Sept we were out in the boat and while he was able to wakeboard fine, he was falling a lot because he just couldn’t land his jumps, the same jumps he never had a problem with before. I told him he’s just getting old and teased him about it. I didn’t understand what was happening. The MRI results came back and showed some mild cervical stenosis and we were referred to a neurosurgeon. Took a while to get that appointment and we had to wait until Oct 1st. The weekend before our appointment we took the kids camping at Disney and to the magic kingdom. He was able to walk the entire park that night but was slower, if we had to move quick he could not do it because his legs just didn’t want to work the way he told them to. He also fell twice that weekend at the campground. I told him he probably had too much to drink. October 1st rolled around and that is when things got real, our lives changed forever. The neurosurgeon looked at his MRI ‘s and said there is nothing there that would be causing his symptoms. This is not surgical. He said he wanted to do a myelogram, just to 100% rule out any compression on the spinal cord. And then he said it. He said “if that comes back clear, you need to see a neurologist that specializes in neuromuscular disorders like ALS”. I did not know what that meant but it sounded scary. Of course I googled it, that’s when I lost my shit. I thought no way, no how, that’s not it. He looked it up, he lost his shit too. I told him there is no way this is it, there are a million things that could cause his symptoms and that the Dr only used that as an example. From that day, I made him promise me not to look at the internet again. And he hasn’t. He’s not the over-obsessive researcher I am and just believes what I tell him. The more I read, the more I got scared. I never let him know this though. I put on a brave happy face for him and the kids every night and then cry all day at work. The myelogram happened Oct 8th, they came in pretty shortly after to tell us it was normal. They called for a neuro consult. She did an exam right there in the hospital and said we need to get see a neuromuscular specialist. They got us an appt for the next day. The neuro appointment was pretty useless and I knew from Day 1 that I did not like the Doctor. He ordered a round of testing….blood work, brain MRI and 2 EMG’s – one on the left arm/hand and 1 on both legs. The EMG’s were last, they happened on Oct 15. (this was all happening very fast!) By then I had found your forum. I was on it every second of every day. I put a passcode on my phone just in case my husband ever picked it up, I did not want him to see it. I didn’t want him to be scared, I was scared enough for both of us. I read story after story after story….looking for something, anything that would tell me I was wrong. Two things I was hanging onto were things I read in the stickys…true clinical weakness is like losing wifi signal, one minute you have it and then next its gone. That had not happened with any of his muscles. Nothing was completely useless. The second thing was the EMG’s. I read that a clean EMG means NO ALS. I clung to that and hoped and prayed for a clean EMG. I made a lot of promises to God for that clean EMG…and we got it. I had never felt happier about anything. I jumped up and literally almost knocked the neurologist over from hugging him when he told us there was nothing abnormal in either of them. But he was also stumped. He didn’t know where else to look. I never really thought this was his specialty but you can’t deny a clean EMG, right!?!? He referred us to Mayo but warned it may take months to get in. I called some contacts I have made through work and was able to get an appointment with Dr Boylan, the head of neurology, for just two and half weeks later. So that’s where we are today. We had our appointment with Dr Boylan yesterday and I left more confused than ever and all of my fear and panic is right back in place. While I trusted the clean EMG’s…the internet said to so I have to, right?! I still had/have doubt. Today his symptoms have doubled. The spasticity in his legs is a constant thing now(I know now that is what it is called). He cannot run or walk down stairs, he goes up them ok. He falls. A lot. He cannot even stand on a skateboard. His left hand is a constant problem. He drops things. A lot. He yells at his left hand. Literally yells at it. I know its frustration but I can’t help but wonder if he is losing his mind.
So back to our appointment yesterday…the entire reason I am writing to you. I’m confused. Dr Boylan did a physical exam and he was great. Everything my husband told him, he really seemed to “get it”, no one else had. He said a lot yesterday, but a few things really stuck out. He did an entire physical exam and did not find much clinical weakness, which the last neurologist said as well. It’s the spasticity that is doing the biggest number on his legs and making him stumble and fall so much. I think he said there was some actual weakness with his left hand? I was not clear on that. He wants to start him on Baclofen and see if it helps lesson the tightness. This is great right? No weakness. A medicine that can help. I was feeling pretty pumped. But then he said he feels confident that we are in fact dealing with a motor neuron disease. He mentioned PLS. I shut down right about then and I have to be honest, I did not hear much else he said. He ordered more blood work, which we did right after the appointment and then we have more EMG’s on 12/2 and a follow up appointment with him for right after the EMG’s. He said we should have all of our answers then. But PLS…? I am only semi familiar with the term. Its better, right? When I look it up, one of the first symptoms is also weakness. We were just told he had no weakness! So how is he getting to this? I am confused. After almost a month after getting a clean EMG and feeling like we can now conquer anything else, I am shocked and feeling very confused and lost. I purposely did not ask a lot of questions because I try to keep my husband in the dark somewhat. Maybe that’s horrible, I don’t know. But until we have definite answers, I don’t want him worrying. I feel like 12/2 is going to be a big day. I need to know what we could possibly be dealing with.
And I just realized I have just written a book. Again, I am sorry, I knew it would happen. I guess all I really needed to say was…what is the difference in PLS and ALS? What I am really hoping is that all of you experts tell me that he does not sound like he has PLS…or ALS…or any MND at all.
I apologize in advance, I will probable type too much and ramble on. I am 35 years old. My husband of 11 years is 36. We have an 8 year old boy and a 2 year old girl. He is my soul mate, my best friend and the best father I have ever known. We truly have a happy life. Had? Have? I don’t know. This all started in July. My husband is an avid wakeboarder. He is extremely coordinated and balanced and can do pretty much anything. At 36 he can still shred on a skateboard better than most teenagers. He and our son ride 4 wheelers and dirtbikes daily. He is a very active man, we are a very active family. In July he started noticing some problems with his legs, he told me “they keep locking up on me, it’s weird, it’s like they get stiff and I feel like I am walking like a robot” This happened occasionally but it was not all the time or even every day. Around this same time he started having issues with his left hand. He was having a hard time doing small things like taking the cap off the toothpaste. He noticed it most in the morning and at night, he said it seemed to get better during the day. Unlike his legs though, this was every day. I told him he was probably just sleeping on it wrong. There was never any tingling, numbness or pain though, just a weakness. He went to our primary care Dr and they ordered an MRI, this was Mid-August. By then, his leg episodes were getting more frequent and he was losing his balance a lot. Dr ordered a lumbar and a cervical MRI. He had these done August 28th. It was around this time I noticed the twitching. Constant fasciculation’s that ran from his shoulders to his elbows in both arms….and never stopped. Early Sept we were out in the boat and while he was able to wakeboard fine, he was falling a lot because he just couldn’t land his jumps, the same jumps he never had a problem with before. I told him he’s just getting old and teased him about it. I didn’t understand what was happening. The MRI results came back and showed some mild cervical stenosis and we were referred to a neurosurgeon. Took a while to get that appointment and we had to wait until Oct 1st. The weekend before our appointment we took the kids camping at Disney and to the magic kingdom. He was able to walk the entire park that night but was slower, if we had to move quick he could not do it because his legs just didn’t want to work the way he told them to. He also fell twice that weekend at the campground. I told him he probably had too much to drink. October 1st rolled around and that is when things got real, our lives changed forever. The neurosurgeon looked at his MRI ‘s and said there is nothing there that would be causing his symptoms. This is not surgical. He said he wanted to do a myelogram, just to 100% rule out any compression on the spinal cord. And then he said it. He said “if that comes back clear, you need to see a neurologist that specializes in neuromuscular disorders like ALS”. I did not know what that meant but it sounded scary. Of course I googled it, that’s when I lost my shit. I thought no way, no how, that’s not it. He looked it up, he lost his shit too. I told him there is no way this is it, there are a million things that could cause his symptoms and that the Dr only used that as an example. From that day, I made him promise me not to look at the internet again. And he hasn’t. He’s not the over-obsessive researcher I am and just believes what I tell him. The more I read, the more I got scared. I never let him know this though. I put on a brave happy face for him and the kids every night and then cry all day at work. The myelogram happened Oct 8th, they came in pretty shortly after to tell us it was normal. They called for a neuro consult. She did an exam right there in the hospital and said we need to get see a neuromuscular specialist. They got us an appt for the next day. The neuro appointment was pretty useless and I knew from Day 1 that I did not like the Doctor. He ordered a round of testing….blood work, brain MRI and 2 EMG’s – one on the left arm/hand and 1 on both legs. The EMG’s were last, they happened on Oct 15. (this was all happening very fast!) By then I had found your forum. I was on it every second of every day. I put a passcode on my phone just in case my husband ever picked it up, I did not want him to see it. I didn’t want him to be scared, I was scared enough for both of us. I read story after story after story….looking for something, anything that would tell me I was wrong. Two things I was hanging onto were things I read in the stickys…true clinical weakness is like losing wifi signal, one minute you have it and then next its gone. That had not happened with any of his muscles. Nothing was completely useless. The second thing was the EMG’s. I read that a clean EMG means NO ALS. I clung to that and hoped and prayed for a clean EMG. I made a lot of promises to God for that clean EMG…and we got it. I had never felt happier about anything. I jumped up and literally almost knocked the neurologist over from hugging him when he told us there was nothing abnormal in either of them. But he was also stumped. He didn’t know where else to look. I never really thought this was his specialty but you can’t deny a clean EMG, right!?!? He referred us to Mayo but warned it may take months to get in. I called some contacts I have made through work and was able to get an appointment with Dr Boylan, the head of neurology, for just two and half weeks later. So that’s where we are today. We had our appointment with Dr Boylan yesterday and I left more confused than ever and all of my fear and panic is right back in place. While I trusted the clean EMG’s…the internet said to so I have to, right?! I still had/have doubt. Today his symptoms have doubled. The spasticity in his legs is a constant thing now(I know now that is what it is called). He cannot run or walk down stairs, he goes up them ok. He falls. A lot. He cannot even stand on a skateboard. His left hand is a constant problem. He drops things. A lot. He yells at his left hand. Literally yells at it. I know its frustration but I can’t help but wonder if he is losing his mind.
So back to our appointment yesterday…the entire reason I am writing to you. I’m confused. Dr Boylan did a physical exam and he was great. Everything my husband told him, he really seemed to “get it”, no one else had. He said a lot yesterday, but a few things really stuck out. He did an entire physical exam and did not find much clinical weakness, which the last neurologist said as well. It’s the spasticity that is doing the biggest number on his legs and making him stumble and fall so much. I think he said there was some actual weakness with his left hand? I was not clear on that. He wants to start him on Baclofen and see if it helps lesson the tightness. This is great right? No weakness. A medicine that can help. I was feeling pretty pumped. But then he said he feels confident that we are in fact dealing with a motor neuron disease. He mentioned PLS. I shut down right about then and I have to be honest, I did not hear much else he said. He ordered more blood work, which we did right after the appointment and then we have more EMG’s on 12/2 and a follow up appointment with him for right after the EMG’s. He said we should have all of our answers then. But PLS…? I am only semi familiar with the term. Its better, right? When I look it up, one of the first symptoms is also weakness. We were just told he had no weakness! So how is he getting to this? I am confused. After almost a month after getting a clean EMG and feeling like we can now conquer anything else, I am shocked and feeling very confused and lost. I purposely did not ask a lot of questions because I try to keep my husband in the dark somewhat. Maybe that’s horrible, I don’t know. But until we have definite answers, I don’t want him worrying. I feel like 12/2 is going to be a big day. I need to know what we could possibly be dealing with.
And I just realized I have just written a book. Again, I am sorry, I knew it would happen. I guess all I really needed to say was…what is the difference in PLS and ALS? What I am really hoping is that all of you experts tell me that he does not sound like he has PLS…or ALS…or any MND at all.
