Possible ALS

[vantec]

Hi all,

Forgive the long post. Strange symptoms started in early June 2006.
Let me first give some background. I have an anxiety disorder, with
occasional panic attacks, and sleep problems. I also have a herniated
disc at C-5/C-6. I take medications for the above problems. Xanax for
the anxiety and panic attacks, Trazodone for sleep, and Norco for pain
management after two unsuccessful cervical operations.

My first symptoms were a generalized weakness, and could not
sleep at all. I developed pain near my liver, and thought that
the medications may have been the reason. I drove myself to the
ER, they did ultrasound, blood and urine work. All came back
normal. I was greatly relived, and went home. This was in the
middle of July.

But the generalized weakness and sleep problems got worse,
and then I had trouble urinating. At that point (about two
weeks later), I had a family member drive me to the ER, and
they did blood work, and gave me a catheter, because I could
not give them a sample, that I wore until I could see a
urinary specialist. He thought it could be an enlarged
prostate, but his examination showed a normal prostate,
and said it was most likely the medications I was taking.
He gave me a home catheter unit, but I only needed
it for two or three days, and with some effort, didn't
need to use it anymore.

At this time, early September, my generalized weakness become
worse, and I had trouble walking. It took effort to walk normal.
Sleep was still a problem, as it is even last night, but I found
that adding 1/2 pill of Soma to the Trazodone would give me 4
to 5 hours of sleep.

Then in early October, I notice that a small amount of muscle
atrophy in my legs, arms and buttocks. No one else could
see it. I was spending almost the whole day in bed, and
thought that my muscle wasting was because I was not using
my muscles for over 6 weeks. I started to lift weights, do
push ups and did walking, running (3/4 of a mile was my limit),
and rode a stationary bike for 1/2 hour, alternating the
aerobic activity every other day. My muscles in my arms are
now bigger than at any time in my life. My question is, is it
possible to grow muscle if you have ALS?

My condition got worse, and my voice got nasal and my throat
felt like there is a knot in it, and I have scalp problems,
a lot of hair loss, and breathing problems. But after about
3 weeks, my voice was normal again, as it is today. I was
getting weaker and weaker, so I saw a top Neurologist in
late October, and he did the normal neuro tests, and an EMG.
He said everything came back normal, except my reflexes, that
were 2+, but said they were from my disc herniation. I told
him I felt twitches, but he did not see any during the time
he examined me. He assured me that I did not have ALS, and
that the medications were the problem.

Well, I feel weaker everyday, and the twitches are now
constant, when I am resting, and there is a good deal of
cramping if I stay in a chair too long, or cross my legs.
I can still walk, but it is getting harder and harder. My
arms are still strong, but my body feels like a rubber band.

I am going to see another Neurologist for a second opinion,
right after the New Year, but I feel so bad now, I wonder
if I can make it. I can think of only two things that I
might have, ALS or Myasthenia Gravis. This is getting way
too long, but I have a lot of the symptoms of Myasthenia
Gravis too. Is there anyone on this group that was diagnosed
with Myasthenia Gravis? Any other input is welcome.
Thank you.

Conrad

[Al]

Hi Conrad. Welcome. From what you describe I'd tend to doubt ALS. I'm not too familiar with MG so couldn't offer an opinion one way or the other. With neurological symptoms it can take months and in some cases years to get a diagnosis. Sounds like your Neuro is doing all the right tests and a second opinion is a good idea. Hang in there and try not to panic. AL.

[vantec]

Hi Al,

Thanks so much for your reply. I really am not panicking. When
I said that I am not sure I could make it, I should have been clearer.
I am having a very difficult time breathing, and in both ALS and MG
this is common. In fact, one could have a MG breathing crisis, and
if they don't get you to the hospital and do a tracheotomy, it could
be fatal. We all know what is the most common reason that ALS is
a death sentence. I don't want to be morbid, but if it does turn out
that I do have ALS, and I have already decided not to take measures
to keep me breathing, when a person loses his/her lung muscles,
does he or she gasp for breath, which would be a terrible way to
go, or do they just pass away in their sleep? I sure hope it is the
latter.

I would really like to know if it is possible for a person that has fast
progressing bulbar ALS, for at least 6 months, to be able to still
grow muscle with exercise?

One last question. Anyone with ALS, have you lost your taste for food?
I can still eat, but food is nearly tasteless. And a glass of wine just
before dinner use to be such a nice feeling after work, but now all it
does is make me tired. Very depressing.

Thanks for having this very helpful group, and I can't thank anyone
enough if they can help me with my questions.

Conrad

[John1]

... I have a lot of the symptoms of Myasthenia
Gravis too. Is there anyone on this group that was diagnosed
with Myasthenia Gravis? ...Conrad
Hi Conrad,

I was misdiagnosed with MG for about a year and it was longer than that before finally getting my ALS dx. I remember being fearful of the operation that would probably be required to cure MG. That's funny now in hindsight. You don't mention whether your speech is impacted. That was my first symptom and my first neurologist thought it was MG. I was given a Tensilon (sp?) drip test and if I had MG, my speech should have improved. Both my dr and I thought there was a marginal benefit and so he decided it was MG. However, once on the medication I received no further improvement and contined to weaken speech-wise. I think the Tensilon test is likely effective to diagnose MG if you see a marked improvement.

John

[cartman]

vantac

sounds to me like you should get yourself refereed to a neuro center at university that specializes in dx als

cartman

[hboyajian]

From what I understand, a diagnosis of ALS includes ruling out all other possibilities that could cause similar symptoms as well as analyzing the prevalence of symptoms common to the disease, such as muscle fasciculations and neurological response times. My dad had an MRI of the brain, to rule out brain tumor/s I think. Have you had that procedure done? If not, it might be something to talk to your doctor about. A friend of mine, who does not have ALS, was experiencing increasing loss of her senses of taste and smell. Her doctor was telling her that this was probably just a result of the aging process (she is approaching 60, not that old). She went to get another opinion and was given a brain scan which showed a benign, not cancerous, tumor that was nonetheless increasing in size and pressing on her sensory nerves. If they had not done surgery to remove it, she would have lost her sight as well. If you are losing your sense of smell, I think it is important to pursue this possibility to rule it out or in to whatever your diagnosis is eventually. I don't think my friend was also experiencing any muscle weakness or loss of movement ability in any part of her body. However, I don't know if that might happen if a tumor were located in a different location of the brain. My friend's surgery was completely successful in removing the tumor, and she has resumed a completely functional life though she has no taste or smell. I do not intend to alarm, but I think it is important to get the brain scan.

[vantec]

Hi John,

Yes, being fearful of the operation to cure MG, after getting your ALS
dx, is, I'm sure, something you would gladly wish your first diagnoses,
was the correct one. Why is it that these Neurologist have such
a hard time getting the diagnoses correct the first time? I have
read some cases where a person had to see 6 or more Neurologists
before they got the right diagnoses.

Did you have any major eye weakness? Did they give you the
blood test that detects elevated levels of immune molecules
or acetylcholine receptor antibodies?

Did you have muscular twitches when you were first tested?

The edrophonium test, or Tensilon drip test is not particularly
reliable, as even people with ALS, can often (as in your case),
show an increase in strength, and it can also just have a placebo effect.

That is the funny thing about my condition, my speech was nasal
sounding for about 3 weeks, and has been fine the last 3 months,
even know I have a very slight difficulty in swallowing.

I will bring up the Tensilon test with my Neurologist, but if it
doesn't give me significant improvement in strength, I won't
give it much weight in my correct diagnosis. Thanks for your
help.

Conrad

[vantec]

Hi Cartman,

I have an appointment on January 3rd, at the nations 5th top rated
Neurology hospital in the US, and the doctor is their top specialist in ALS.

I sure wish someone could answer my question about if muscle growth is
possible with someone with ALS.

Conrad

[patricia1]

Forgive the long post. Strange symptoms started in early June 2006.
Let me first give some background. I have an anxiety disorder, with





occasional panic attacks, and sleep problems. I also have a herniated
disc at C-5/C-6. I take medications for the above problems. Xanax for
the anxiety and panic attacks, Trazodone for sleep, and Norco for pain
management after two unsuccessful cervical operations.

My first symptoms were a generalized weakness, and could not
sleep at all. I developed pain near my liver, and thought that
the medications may have been the reason. I drove myself to the
ER, they did ultrasound, blood and urine work. All came back
normal. I was greatly relived, and went home. This was in the
middle of July.

But the generalized weakness and sleep problems got worse,
and then I had trouble urinating. At that point (about two
weeks later), I had a family member drive me to the ER, and
they did blood work, and gave me a catheter, because I could
not give them a sample, that I wore until I could see a
urinary specialist. He thought it could be an enlarged
prostate, but his examination showed a normal prostate,
and said it was most likely the medications I was taking.
He gave me a home catheter unit, but I only needed
it for two or three days, and with some effort, didn't
need to use it anymore.

At this time, early September, my generalized weakness become
worse, and I had trouble walking. It took effort to walk normal.
Sleep was still a problem, as it is even last night, but I found
that adding 1/2 pill of Soma to the Trazodone would give me 4
to 5 hours of sleep.

Then in early October, I notice that a small amount of muscle
atrophy in my legs, arms and buttocks. No one else could
see it. I was spending almost the whole day in bed, and
thought that my muscle wasting was because I was not using
my muscles for over 6 weeks. I started to lift weights, do
push ups and did walking, running (3/4 of a mile was my limit),
and rode a stationary bike for 1/2 hour, alternating the
aerobic activity every other day. My muscles in my arms are
now bigger than at any time in my life. My question is, is it
possible to grow muscle if you have ALS?

My condition got worse, and my voice got nasal and my throat
felt like there is a knot in it, and I have scalp problems,
a lot of hair loss, and breathing problems. But after about
3 weeks, my voice was normal again, as it is today. I was
getting weaker and weaker, so I saw a top Neurologist in
late October, and he did the normal neuro tests, and an EMG.
He said everything came back normal, except my reflexes, that
were 2+, but said they were from my disc herniation. I told
him I felt twitches, but he did not see any during the time
he examined me. He assured me that I did not have ALS, and
that the medications were the problem.

Well, I feel weaker everyday, and the twitches are now
constant, when I am resting, and there is a good deal of
cramping if I stay in a chair too long, or cross my legs.
I can still walk, but it is getting harder and harder. My
arms are still strong, but my body feels like a rubber band.

I am going to see another Neurologist for a second opinion,
right after the New Year, but I feel so bad now, I wonder
if I can make it. I can think of only two things that I
might have, ALS or Myasthenia Gravis. This is getting way
too long, but I have a lot of the symptoms of Myasthenia
Gravis too. Is there anyone on this group that was diagnosed
with Myasthenia Gravis? Any other input is welcome.
Thank you.

Conrad[/QUOTE]
Dear conrad I was diagnosed with M G in l999 when I had only slurred speech With MG yoou may have eye lip droop and eyelid weakness with weakness later in the day as you tire.MG gets better after you rest. Then as years went by I developed arm weakness twitching and wen to John hopkins and was dx as ALS in 2005. I would see a neurologist that specialies in ALS in Philly or in John Hopkins or Cornell Good Luck Pat

[Beebe]

Hi there, I was dx with Myasthenia Gravis in 1969 at Columbia Presbyterian in N.Y. City. My first symptom was double vision when I was in College . The weakness in my arms started after I had my first daughter 1968. I couldn't carry her at times weakness in legs, droopy eye lids and facial weakness . I was on mestinon and did very well . Had a relapse about 6 months after my second daughter was born. Was on about 13 pills a day plus a timespan at night . That was in 1971 also was under a lot of stress and worry before that. That's another story. Well in 1978 New Years Day I woke up and had trouble breathing, had pnemonia. Was transferred from Kingston, N.Y. Hospital to Columbia . When the Pnemonia cleared I had my Thymus gland removed, they do it like open heart surgery. I was there for almost 2 months. But within a year I was back to normal , Took only 3- 5 pills a day. My Doctor told me I was the best judge of what I should take. For the last 20 years or so I have been meds. free . I don't remember any twitching, but did have good days and bad days. A friend of my daughter has Myasthenia Gravis she had her Thymus removed last year a few months after dx. They know more now. I don't know if this is a help or not, but feel free to ask me anything. I was determined to keep going, my children needed me. Now I am still fighting for my son-in-law and all are pals. My Best to all, Beebe

[vantec]

From what I understand, a diagnosis of ALS includes ruling out all other possibilities that could cause similar symptoms as well as analyzing the prevalence of symptoms common to the disease, such as muscle fasciculations and neurological response times. My dad had an MRI of the brain, to rule out brain tumor/s I think. Have you had that procedure done? If not, it might be something to talk to your doctor about. A friend of mine, who does not have ALS, was experiencing increasing loss of her senses of taste and smell. Her doctor was telling her that this was probably just a result of the aging process (she is approaching 60, not that old). She went to get another opinion and was given a brain scan which showed a benign, not cancerous, tumor that was nonetheless increasing in size and pressing on her sensory nerves. If they had not done surgery to remove it, she would have lost her sight as well. If you are losing your sense of smell, I think it is important to pursue this possibility to rule it out or in to whatever your diagnosis is eventually. I don't think my friend was also experiencing any muscle weakness or loss of movement ability in any part of her body. However, I don't know if that might happen if a tumor were located in a different location of the brain. My friend's surgery was completely successful in removing the tumor, and she has resumed a completely functional life though she has no taste or smell. I do not intend to alarm, but I think it is important to get the brain scan.

Hi Hboyajian,

No, I have not had a MRI done in two years. It was done for my cervical spinal problems. It is not that I have lost all taste, and if anything my ability to smell has increased, not decreased. Nevertheless, I think it is s good idea to have the brain scan.

What still amazes me is that doctors have such a hard time diagnosing ALS and other neuromuscular diseases. Let's
take my case. I have breathing problems all day long, the amount of anxiety makes no difference. The breathing problems
are noticeably labored for me. My weakness is unlike any I have ever felt, and I use to be a bike racer that climbed hills that gave pain and weakness after a 120 mile race, that very few people ever feel. I have twitches in my hands, feet, legs, back and face. I did have speech problems, that have strangely improved, but are still there if I speak too long, and late at night. I have muscle atrophy nearly everywhere, and the skin on my hands feels and looks like I am 90 years old (I'm not 50 yet). My eye's are dry, and that is a symptom of ALS, my muscles are very stiff and cramp in a way I have never felt before, and my limbs feel like they weight 300 pounds. I have lost 40 pounds in 6 months, and I eat as much as I can, more than before my symptoms started, eating the fattest foods, until I feel so full, that I get a little nauseous.

I can feel my body quickly going downhill, I have never had a day when I felt better than the day before. I feel trapped in my body, and I know it will only get worse.

Now, after all these symptoms, and more, why did my neurologist, from the third best rated neurology hospital in the
US (University Hospitals of Cleveland, Ohio), tell me that it was impossible that I could have ALS? Is this about money?
Does anyone think I don't have ALS? Believe me, I pray to God that I don't, but the symptoms point to only one diagnosis, ALS.

Conrad

[vantec]

Hi there, I was dx with Myasthenia Gravis in 1969 at Columbia Presbyterian in N.Y. City. My first symptom was double vision when I was in College . The weakness in my arms started after I had my first daughter 1968. I couldn't carry her at times weakness in legs, droopy eye lids and facial weakness . I was on mestinon and did very well . Had a relapse about 6 months after my second daughter was born. Was on about 13 pills a day plus a timespan at night . That was in 1971 also was under a lot of stress and worry before that. That's another story. Well in 1978 New Years Day I woke up and had trouble breathing, had pnemonia. Was transferred from Kingston, N.Y. Hospital to Columbia . When the Pnemonia cleared I had my Thymus gland removed, they do it like open heart surgery. I was there for almost 2 months. But within a year I was back to normal , Took only 3- 5 pills a day. My Doctor told me I was the best judge of what I should take. For the last 20 years or so I have been meds. free . I don't remember any twitching, but did have good days and bad days. A friend of my daughter has Myasthenia Gravis she had her Thymus removed last year a few months after dx. They know more now. I don't know if this is a help or not, but feel free to ask me anything. I was determined to keep going, my children needed me. Now I am still fighting for my son-in-law and all are pals. My Best to all, Beebe

Hi Beebe,

Thanks for your MG history. While I understand it is a difficult life, I hope that there is a chance I have MG, or some other neuro condition that isn't fatal. I do have one question. Do you ever have days where you feel completely normal?

Conrad

[Beebe]

Hi Conrad, Years ago before the Thymectomy I remember having really good days. Since then I have been very fortunate to show no signs of Myasthenia Gravis. My Best to you, Beebe

[DavidGL]

Hi Hboyajian,

No, I have not had a MRI done in two years. It was done for my cervical spinal problems. It is not that I have lost all taste, and if anything my ability to smell has increased, not decreased. Nevertheless, I think it is s good idea to have the brain scan.

What still amazes me is that doctors have such a hard time diagnosing ALS and other neuromuscular diseases. Let's
take my case. I have breathing problems all day long, the amount of anxiety makes no difference. The breathing problems
are noticeably labored for me. My weakness is unlike any I have ever felt, and I use to be a bike racer that climbed hills that gave pain and weakness after a 120 mile race, that very few people ever feel. I have twitches in my hands, feet, legs, back and face. I did have speech problems, that have strangely improved, but are still there if I speak too long, and late at night. I have muscle atrophy nearly everywhere, and the skin on my hands feels and looks like I am 90 years old (I'm not 50 yet). My eye's are dry, and that is a symptom of ALS, my muscles are very stiff and cramp in a way I have never felt before, and my limbs feel like they weight 300 pounds. I have lost 40 pounds in 6 months, and I eat as much as I can, more than before my symptoms started, eating the fattest foods, until I feel so full, that I get a little nauseous.

I can feel my body quickly going downhill, I have never had a day when I felt better than the day before. I feel trapped in my body, and I know it will only get worse.

Now, after all these symptoms, and more, why did my neurologist, from the third best rated neurology hospital in the
US (University Hospitals of Cleveland, Ohio), tell me that it was impossible that I could have ALS? Is this about money?
Does anyone think I don't have ALS? Believe me, I pray to God that I don't, but the symptoms point to only one diagnosis, ALS.

Conrad
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

[John1]

Hi John,...Did you have any major eye weakness? Did they give you the
blood test that detects elevated levels of immune molecules
or acetylcholine receptor antibodies?

Did you have muscular twitches when you were first tested?

The edrophonium test, or Tensilon drip test is not particularly
reliable, as even people with ALS, can often (as in your case),
show an increase in strength, and it can also just have a placebo effect.

That is the funny thing about my condition, my speech was nasal
sounding for about 3 weeks, and has been fine the last 3 months,
even know I have a very slight difficulty in swallowing....
ConradHi 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

[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.