Old 12-15-2006, 03:10 PM #1 (permalink)
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Default Possible ALS

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
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Old 12-15-2006, 03:36 PM #2 (permalink)
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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.
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Old 12-16-2006, 12:08 AM #3 (permalink)
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Default Re: Possible ALS

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
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Old 12-16-2006, 10:41 AM #4 (permalink)
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Quote:
Originally Posted by vantec
... 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 diagnosed. 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
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Old 12-16-2006, 11:27 AM #5 (permalink)
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vantac

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

cartman
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Old 12-16-2006, 12:18 PM #6 (permalink)
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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.
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Old 12-16-2006, 03:14 PM #7 (permalink)
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Default Re: Possible ALS

Hi John,

Yes, being fearful of the operation to cure MG, after getting your ALS
diagnosed, 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
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Old 12-16-2006, 09:16 PM #8 (permalink)
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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
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Old 12-16-2006, 09:54 PM #9 (permalink)
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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 diagnosed as ALS in 2005. I would see a neurologist that specialies in ALS in Philly or in John Hopkins or Cornell Good Luck Pat
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Old 12-16-2006, 10:39 PM #10 (permalink)
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Default Hi yantec

Hi there, I was diagnosed 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 diagnosed. 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
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Old 12-16-2006, 10:46 PM #11 (permalink)
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Quote:
Originally Posted by 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.
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
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Old 12-16-2006, 11:28 PM #12 (permalink)
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Quote:
Originally Posted by Beebe
Hi there, I was diagnosed 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 diagnosed. 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
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Old 12-17-2006, 10:26 AM #13 (permalink)
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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
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Old 12-18-2006, 11:58 AM #14 (permalink)
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Quote:
Originally Posted by vantec
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
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Old 12-19-2006, 10:08 AM #15 (permalink)
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Quote:
Originally Posted by vantec
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....
Conrad
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
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