Possible ALS

[vantec]

Hi Conrad,

First, your question about muscle growth with ALS. Of course it is possible to have muscle growth--provided they are muscles that have not yet been affected by the disease. Remember that it is *not* the muscles themselves that are a problem but the nerves that communicate with them. Over time, more and more neurons die and more and more of your muscles lose the communication. Then they atrophy. That is why it can be so different for everyone. The neurons dies at differing rates and different neurons are affected at different times. Then the body seeks to compensate by reenervating to those muscles afflicted. But once you have a muscle that has completely lost connection with the brain that muscle cannot be regrown.

There are many things that can cause your symptoms. Most of what you describe are highly subjective. You are not going to get a diagnosis based upon your subjective interpretation. The neuro will recognize real muscle atrophy when he sees it. For your neuro to say it is "impossible" for you to have ALS (was that a direct quote or a paraphrase?) seems rather extreme. Unlikely may fit well. Simply because you are not showing enough true symptoms.

In short, I would disagree with you that " the symptoms point to only one diagnosis, ALS". You need to go through that long drawn out process of diagnosis that so many ALS victims go through. Read through the posts here and you will read the story over and over. I am going through that process right now at an ALS clinic. Each time I go, the neuro sees a little more objective clinical evidence but not enough to allow diagnosis. I have only a few more tests (for some of the more exotic possibilities) to go through now. After that it becomes a waiting game. She told me that she has her suspicions, but that I am in "never never land". Good way to put it.

You may need to get used to the possibility that you will need to go through this for quite some time. The only way to deal with it rationally is to adjust mentally and treat the symptoms.

A member of our church, who has had ALS since 2001 just passed away last week. At his memorial service, someone spoke about him and remarked on his good cheer throughout the ordeal. It was said that his way of dealing with it was "Que Sera Sera".

DavidGL

DavidGL,

About growing muscle with ALS. I am working out each day with a 15 pound dumbbell, 40 overhead reps with my left and right arms, and 30 curls, again with each arm. I also can do 19 to 21 real push-ups, but in every case, there is a lot of pain doing these exercises. I started to do them, because my arms were getting weak, so I am sure that the arm muscles were affected by the disease, before I started the weight lifting, and push-ups. When I started, I could only do one push-up, but in less than two months, I now can do over 20. It's that time of the day, so I am going to do the weight lifting right now, and see if I can still do 140 reps with the 15 pound dumbbell, and I will come back and continue this post.

Okay, I'm back. I was able to the 140 reps, and could have done more, but with great difficulty. I suppose that when the day comes that I cannot do the 140 reps with the dumbbells, that will signal that I will for sure be losing muscle, and won't be able to grow my arm muscles anymore. I'm not sure what this proves, but I want to fight whatever is happening to me, not that I am in denial.

I have to disagree with your comment that what I described is highly subjective. I hope that I don't offend anyone, but one of the most distressing things about my atrophy, is that my penis is like a limp rubber band. My buttocks have lost so much muscle, that even know I am able to maintain my weight for the last month, by eating as much food as I can, and eating foods with the highest caloric content, I have dropped from a 36 to a 32 inch waist pants.

As for my neurologist, here is a quote from him on October 26, 2006. "I do not see any neurologic syndrome in this clinical setting. There are no upper or lower motor neuron findings on examination. He has slight brisk reflexes which is not unusual in a person with a history of herniated disc in the cervical spine. In fact, I looked at the MRI of the cervical spine, which indeed shows evidence of a mild disc herniation. From a neurological standpoint, I do not see any evidence of amyotrophic lateral sclerosis and I reassured Mr. ***** about this fact. We went further and obtained the electromyography during today's visit, which again shows no evidence of motor neuro disease or peripheral neuropathy. In summary, I do not see any specific neurologic condition."

Let me tell you what he said about the EMG, which he let me see. There were normal ranges, and my readings. Almost all my readings were very high. He told me, look at these readings, they are two and three times better than normal! So, I am to believe that my reflexes are three times better than the average person? I should become a boxer, with such great reflexes, even know I can hardly lift the bed sheets with my legs. And this, from the third best rated neuro hospital in the country! What he was doing, was covering up the fact that I had overly brisk reflexes, and making it out to be a good thing, when it is one definite sign of ALS.

I don't know if what he said is that ALS is impossible, but his report was about as close to saying it, as I could tell. How many symptoms do I have to show, before the doctors will even consider that I may have ALS? 40 pound weight loss, fasciculation's all over my body, thick saliva, difficulty in swallowing, knot in the throat, or a feel of it closing down, any muscle in my body can cause a painful cramp, in a way I have never felt before, shortness of breath, dry eyes, muscle weakness in my total body, worse in my legs, than my arms, skin changes, feet drag and will catch the carpet, and last night I finally lost my balance, and almost broke my arm. It is in terrible pain, and even the skin around where I bruised and cut my arm, looks like someone 40 years older than I do. Even the muscles in my forehead are stiff and weak. And my joins pop and crack like crazy. Less than 6 months ago, I had zero symptoms, and now I feel like everyday it is getting worse.

Doctors are not perfect, and because of my doctor's misdiagnosis, I am in unnecessary pain, and if I have something other than ALS, he has delayed a possible cure for a neuropathy, that may affect the quality of my life. A patient sometimes knows their body better than the doctor. I knew I had ALS three months after my symptoms started. Let's hope I am wrong, I would look at life in a totally different way, but I am afraid that in about two weeks, when I get my second opinion, it will come back ALS.

Thanks for your reply.

Conrad

 

[Al]

Hi Conrad. First of all the penis thing is just plain wrong. People with ALS are usually able to maintain an active sex life until the muscles moving the little fella can't move him anymore and then there are other ways. So forget that one. You say you can't lift the covers but can do all those push ups and dumbbell reps? No wonder you feel weak. I'm sure I said it before but you really need to calm down and wait for a second opinion. AL.

 

[vantec]

Hi Conrad. First of all the penis thing is just plain wrong. People with ALS are usually able to maintain an active sex life until the muscles moving the little fella can't move him anymore and then there are other ways. So forget that one. You say you can't lift the covers but can do all those push ups and dumbbell reps? No wonder you feel weak. I'm sure I said it before but you really need to calm down and wait for a second opinion. AL.

Hi Al,

I am not saying I can't get an erection, or have sex (but it lacks the firmness that I had just 4 months ago, and is not from any mental or functional problem). What I am saying is that the when it is flaccid, the tissue has lost its normal elasticity, and now feels like it is, for a lack of a better term, like a wet noodle. Now, don't come back and say that is how it is supposed to feel. This is a breakdown of the tissue itself, and it is most certainly a neurological problem.

Don't put words in my mouth. I didn't say I couldn't lift the covers, only that it is very hard to do. And if you read what I wrote a little closer, you would have noticed that I said that my arms are stronger than my legs.

I am actually quite calm about my condition, what I am not calm about is that no one believes me. Well, we will all know in two weeks.

Conrad

 

[vantec]

Hi Conrad, sorry for the slow response. No, no major eye weakness and no I didn't have a blood test as you describe. I don't recall muscle twitching or fasciculations. In fact they have not been a major symptom for me although I do have fasics from time to time. Your comment on the tensilon drip test is interesting. I have wondered since whether I was having a mild placebo effect. My speech has been all over the map for more than 10 years now. I can still speak quite clearly most days although I stopped giving public talks 6 years ago.

-John

Hi John,

Sorry for my slow response. I'm surprised that they diagnosed you first with MG, without the blood tests and eye droop. The eye droop is one of the main classic symptoms, and the blood tests in 70% of MG patients show hyperplastic changes in the blood that indicate an active immune response. The antibodies block, or destroy the receptors for acetylcholine at the neuromuscular junction which prevents muscle contraction from occurring. These antibodies are produced by the body's own immune system.

Myasthenia gravis is an autoimmune disease because the immune system which normally protects the body from foreign organisms -- mistakenly attacks itself. Thus, it is one of a few neurological conditions that can be confused with amyotrophic lateral sclerosis.

Be thankful (and hard as that sounds) that you are one of the few people with ALS that have lived much longer than the average life span. I had speech and breathing problems only 2 months after I felt something was seriously wrong with me.

Merry Christmas, and wishes for many Happy New Years,

Conrad

 

[Al]

Hi Conrad. Sorry if I misinterpreted your post. Without getting into a penis war here I'd just like to say that there isn't muscle in a penis. It is cartilage and blood vessels. With ED the blood doesn't stay in the penis and that's what the new blue pills address. I could be wrong here but a wet noodle does not qualify in the neurological disorders. As you say we'll all know in a couple of weeks. Hopefully they will be bale to give you a diagnosis. Not knowing is definitely worse than knowing what is wrong with you. Hopefully you will be able to enjoy the season and look forward to the new year. AL.

 

[vantec]

Hi Conrad. Sorry if I misinterpreted your post. Without getting into a penis war here I'd just like to say that there isn't muscle in a penis. It is cartilage and blood vessels. With ED the blood doesn't stay in the penis and that's what the new blue pills address. I could be wrong here but a wet noodle does not qualify in the neurological disorders. As you say we'll all know in a couple of weeks. Hopefully they will be bale to give you a diagnosis. Not knowing is definitely worse than knowing what is wrong with you. Hopefully you will be able to enjoy the season and look forward to the new year. AL.

Al,

No, it has tissue too. And that is what has changed. I don't need any ED pills, I thought I made that clear in my posts. Wet noodle wasn't meant to be a literal neurological term, only what it feels like.

Doesn't anyone with ALS feel the changes in your skin and tissue? Does anyone feel worse in the morning, than at night? Is anyone losing a lot of their hair?

As far as not knowing is worse than knowing what is wrong with you, I must disagree. What could be worse than knowing you have ALS? With the way doctors, family and members here don't think I can know I have ALS, I would not be surprised that in less than 10 days, when I see a top Neurologist doctor, they still won't know what is wrong with me, but I sure know. Sure is frustrating and I have suffered needless pain for many months now. Don't believe when they say ALS is painless, and I don't mean just mental.

Anyway, have a Happy New Year,

Conrad

 

[Al]

Well I did check and apparently there is some muscle there. Not a lot but some. If you know you have ALS then you know the average life span is 2-5 years. You then make the decision to die or live with it. Not knowing makes you anxious and open to a myriad of symptoms and don't take this wrong but overly sensitive to any minor changes that you wouldn't normally give a second thought to. Then you start looking everywhere for more information and can end up sure you will die before year end or whenever. Trust me I know of what I speak. Been there done that as they say. Almost 4 years ago. Knowing is better. Ask anyone here that really has ALS. AL.