Please help with your insights

[Dickensonxx]

When I was 7 yrs old, my father passed away of ALS. He was 52 years old. About 2 months ago, I had a strange sensation on the top of my knee cap - a twitch. Since that day, and every day since, I get twitches there in increasing frequency and now they have spread to various other parts of my body - sometimes my foot, sometimes (like today) my right knee, sometimes the back of my quadriceps near my butt, etc. Although I felt my arm was weak last week, the last couple of days it has felt fine. My knee, however, now feels weak and is popping. I can still put weight on it and haven't dropped anything or tripped. However, I am not able to get into a neurologist for a couple of weeks and am fearing the worst which is causing high anxiety (of course). My father had sporadic ALS, however, I am told that even in that form there have been instances where he could have somehow gotten a gene mutation and passed that onto me. I am also 52 years old. I recently lost weight on WW (20 lbs), and now haven't been eating much due to the stress of this possible diagnosis. My reflexes and other strength tests a week ago were fine in my general doctor's office and I can walk on heels/toes, but I now feel like it is just a matter of time before my muscles begin to die and atrophy (in particular my left knee which has gotten the brunt of the twitches). I sometimes feel like my left leg is weak - but could that be weight loss or is that wishful thinking? I'm only now 131 lbs and I've never had a lot of muscle anyway. The other areas that have twitched do so randomly - could be my back quadricep one day, but then it won't occur for another few days, but by and large the twitches have increased from what was one a day to having them, at least somewhere on my body, at least once a minute. I am so frightened. I haven't had an MRI or EMG yet, so I am unsure what to expect. Does anyone have any insights? Thanks so much for your time.

 

[Atsugi]

Hi Dickenson,

I wouldn't worry about ALS if I were you. The fact that you have one person in your family tree with ALS doesn't make it Familial.

The twitches don't really count for much. Lots of people twitch and lots of conditions cause twitching. The fact that some people with ALS twitch is a different kind of twitch than you describe. Perhaps your stress and anxiety caused the twitches?

You're right to focus on weakness. ALS is all about paralyzed muscles. But there are lots of reasons for weakness. It's important to note that, in ALS, muscles don't feel weak, they don't feel weird or tired; they simply don't contract. Your doctor tested your muscles and found no reason to be concerned, right?

It's understandable that you're worried about inheriting ALS. But from what you've described, I think the anniversary of your dad's death might have more to do with this.

Don't worry about such a rare disease. Your doctors will get to the bottom of this.

 

[Dickensonxx]

Atsugi, thank you for your post. How are ALS twitches different from what I am describing? (I do pray that I am subconsciously causing some of this).

Christine

 

[Atsugi]

Christine, you described your twitches as being all over. But when ALS causes twitches, it is localized to the next muscle that is becoming paralyzed.

Twitching is caused by many things. ALS is rare. It makes no sense to jump from a common symptom to a rare disease.

Don't worry while you're waiting for your appointment. See the doc and let her investigate.

 

[Dickensonxx]

Atsugi,

The twitches have settled down throughout my body - still get very subtle twitches occasionally, but the twitches are definitely focused on my left leg - under left kneecap, left calf, left thigh and left foot. In that respect, it does feel that it is progressing out from my knee cap. I am having much difficulty descending stairs now because I have weakness in my left leg. Over the past couple of days, I now am having stabbing sharp pains primarily in hands and feet, but sometimes elsewhere. I bent my head down yesterday and both of my forearms became redhot. I am also choking a lot more on food. I'm still working on getting the MRI - hopefully insurance will approve this week. I am so glad I have you to talk to about this. Thank you for listening.

 

[Atsugi]

Christine, I'm listening.

As to the pains, those point AWAY from ALS. Putting your head down and getting hot forearms doesn't sound like any ALS I've ever heard of.

Your weakness and choking problems are probably not ALS. But still, you should definitely see a doctor about all of this. He'll assess your weakness, run some tests. Hopefully this will all be solved quickly. Good luck.

 

[Dickensonxx]

Atsugi, you sure do play an important function on this forum, and I thank you so much for it. I went to a neurologist yesterday who did an exam and initially said she didn't think I had ALS. However, at the end of the exam I told her my father had ALS and she did a 180 and started asking me a lot of questions about where he had been treated (it was back in 1968 and I was 6 years old, so I had no idea), family history, whether he had been genetically tested (she guessed not since it was so long ago) . . . and then she said she wanted to get me in for a nerve conduction and EMG first thing this morning. To say that I was terrified is an understatement. Her concern became MY concern. I tried to keep your words in my mind - tried to believe that my twitches, intermittent numb leg, strange pains, etc., were not ALS....but my worries were getting the best of me. Today they did both tests - and both tests were NORMAL. I felt like the weight of the world had just been lifted from my shoulders. But something has happened to me. During this whole process, I promised myself that if I end up not having ALS, is there something that I can do to help those who do? I am not knowledgeable like you are, so I couldn't serve the role that you fill so perfectly, but what I do have is an abundance of compassion. I wish that there was something that I could do to help people who actually do have the diagnosis - just like my own father did. I was too young to do anything to help him, but now I feel that maybe I could do something....and I don't mean just putting a bucket of icewater over my head (although I think the ALS Challenge was one of the coolest things ever to raise awareness and much-needed money)....I mean being of service where needed. I don't have a degree in social work, or physical therapy, or anything. I'm just someone who has a heart for people who have this diagnosis. What should I do?

 

[Nikki J]

I am happy to hear your news. It is lovely you want to help. Consider contacting your local ALSA chapter. There are probably many volunteer opportunities. You might be able to visit a PALS or help with a ride to an appointment or other things like that. Or maybe you have a special skill your chapter needs
And Mike is a gem. You are right

 

[Dickensonxx]

Nikki, thank you for responding. I am so sorry for your own diagnosis and I feel a bit guilty in even mentioning my news today in light of the fact that I am a guest on this forum and the majority of you do indeed have this illness. My heart truly goes out to you and admire that you still make time to reach out to others. I am glad to hear that you think there are many volunteer opportunities and I will contact my local ALSA chapter tomorrow. Also, I am glad you told me his name is Mike! I guess I've been calling him by his last name. Thanks again for the helpful info.

 

[Nikki J]

We love hearing good news! And I appreciate it when people come back and tell us. It makes us happy and provides information for others who worry. I always feel for anyone who has lost a family member to this disease as you actually know what this diagnosis means.
Atsugi is Mike's forum name so you are perfectly correct to use it