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I know there are a million questions on here that present a case and ask if it is ALS, so I am sorry that I am going to be yet another one.

I am worried about my dad. His appointment with a second neurologist is next week. Google is scaring so I was hoping somewhere here would give me their input.

It is hard for us to remember when the muscle weakness began, however we can definetly say it started at least in January of 2009. The weakness was only slight (unable to pull a back extremely hard bow) in the beginning, but this past winter/spring his arm became weaker...unable to lift a bowlling ball or spray a can of spraypaint. Then he started using a stress ball and he was able to lift the bowlling ball and spray the can, but his arm is still weaker then it was back in 2009. It is only his right arm. He states that he has no other muscle weakness. He did have twitches that started this spring, but they come and go (I'm not sure how often).

My dad had taken lipitor for a while...I have read and the commercial says that this may cause muscle weakness and may lead to a diagnosis of ALS? Has anyone had this experience?

I can tell you that he has taken an EMG and it was not clean...I am not sure how these are "rated" but it seems that his wasnt clean however it wasn't enough for a diagnosis?

That neurologist was a bit weird and referred my dad to a specialist. 3 months later we are seeing the specialist.

By the way he is 50 and we do not know of any medical history that relates to this.
 
Hi, my sister starting experiencing leg weakness a month or so ago and we're going through many of the same uncertainties that you are. I've been reading as many forums, articles, and research about motor neurone problems that I can, and here are some of the things I've learned that may be helpful: one, it is still surprising to me the varying degree of symptoms and the rate of progression that MND/ALS patients exhibit. What I take away from that is even if we get a worst case diagnosis, there is a lot of hope that we can have many good years left. Not a guarantee, of course, but still a real possibility. Two, I have read many cases of people with a wide range of symptoms and test results that cannot get a 100% diagnosis. MNDs seem to be very tricky to diagnose in some cases.
So we have accepted that we may not get a 100% diganosis and it may come down to just monitoring symptoms and trying to keep learning as much as we can, and that even if we get a worse case ASL diagnosis, that can still mean many different possibilities for the future. For instance, I spend a lot of time looking at the case histories and progressions of MND/ALS patients, and it is helpful to consider the wide variety of ways the the symptoms and diseases manifest, and the many coping strategies of those who regard MND/ASL as a livable, workable disease (albeit an undeniably tough one).
 
Hi, Daughter,

From the information that you've given, there is no way of telling what, if anything, might be wrong with your father. You have provided very little specific information and there are many possible conditions that can cause the symptoms you describe. Therefore, my advice to you is two-fold.

First, your father has his appointment with the specialist next week. Just wait until after that appointment before you do any further speculating about what your father may have. You may not get all the answers you are seeking from that appointment, but you will get some and you'll get a better idea of the questions that will need to be asked and answered than you have now.

Second, please stop searching around on the Internet for answers. There is a lot of poorly organized information and absolute misinformation out there and you will probably do yourself more harm than good by trying to figure out what is relevant to your father's case and what isn't.

Good luck.
 
Thank you both for your responses. I have avoided the internet for 3 months. I am very aware of how to search for reliable evidence based research, but I prefer not to look until we know something. I am just having a rough week and was basically hoping I would get on here and people would tell me that his progression is too slow or that it sounds like something else or that it is rare for it to be in one arm only......basically anything to help my nerves. I know that most on here are not MDs and many people on here know no more than I do, but I just wanted something. Thank you both for your time. I pray for a cure, not just for my father, but for everyone on here (and not one here) who has shown me so much in just a few hours.
 
"I am just having a rough week and was basically hoping I would get on here and people would tell me that his progression is too slow or that it sounds like something else or that it is rare for it to be in one arm only......basically anything to help my nerves. I know that most on here are not MDs and many people on here know no more than I do, but I just wanted something."

What you have just said probably applies to almost every one of us who first came to this section of the forum. Certainly that describes my feelings word for word. I hope your very eloquent words help people understand that it is the "something" that we get from coming here that matters more than some specific piece of information or answer. That's what to me this entire section is for; it has helped me to "prepare for the worst" while still "hoping for the best," and just talking about it all with others who understand has helped my nerves the most. Even if it is a motor neural problem, the slow progression of his weakness and the fact that it hasn't spread to include speech problems (which many cases I've read about do include) is a positive thing to focus on until you know more.
 
Dear Daughter,

Do what ever you need to without apologising. Everyone here has been on a similar journey and experienced your fears. My heart goes out to you.



Lorna
 
Hi Daughter. I came here 3 years ago when my husband has similar issues as your dad. Hubby lost strength in his hand--couldn't turn a car key, use eating utensils, hold a coffee cup. Got diagnosed with Carpal Tunnel, had surgery, and condition worsened. Got another opinion which was PMA and then went to a neuromuscular disorder clinic and had a differential diagnosed. of ALS. Finally got diagnosed with CIDP-MADSAM which is treatable. But I totally understand why you are here as I came here for the same reason and lived in a state of high anxiety for many months while my husband was being diagnosed. Think as positively as you can as the power of positive thinking does work, and say a few prayers too. All the best to you and your dad and please let us know how things turn out.
Laurel
PS I have said a prayer for your dad. And it is a good sign that your dad regained a bit of strength with the stress ball. My husband had/has twitches too.
 
Thank you for your prayers. If you don't mind me asking laurel could you tell more about CIDP=MADSAM. I think I forgot to mention a key point in my intial post. The muscle in my dad's arm has wasted to about 2/3 the size of his other arm. All we can do is wait and pray, but I just want to understand more about motor neuron disorders.
 
You can take a lot of comfort in the fact that it is unlikely he has ALS.
First, it never gets better, only worse.
Second, it is only confined to one hand. If ALS it would most likely be getting worse and spreading by now.

So, there is reason to be optimistic.
 
Thank you for your prayers. If you don't mind me asking laurel could you tell more about CIDP=MADSAM. I think I forgot to mention a key point in my intial post. The muscle in my dad's arm has wasted to about 2/3 the size of his other arm. All we can do is wait and pray, but I just want to understand more about motor neuron disorders.

Hi again. My husband's right arm is also wasted and is also about 2/3's the size of his other arm, and the the thenar plane in that hand is wasted as well. I remember being shocked one day when I took a good look when he wore a short sleeved shirt. That terrible wasting just seemed to insidiously appear, and of course hubby never really pointed it out to me (head in the sand and scared I'm guessing).

CIDP-MADSAM is an autoimmune disease that causes demyelinating of the nerves. His is more motor than sensory. Alot of people with CIDP have mostly sensory symptoms and my husband has few of those. Hubby also has some foot drop of the right foot that happened while he was waiting for treatment. It is discouraging looking back at how this got misdiagnosed. Hubby was c/o weakness in that hand since at least 2004. He was an airline pilot and started having trouble moving the toggle switches due to loss of strength. He saw a very credible neurologist for about 3 years and had EMG's and NCS testing at least 3 or 4 times with the doctor saying "nothing I can find. Come back if things change." Things kept going downhill with the weakness and atrophy. So he then says Carpal Tunnel, you need surgery. Surgery probably made things worse. Then we paid for a private specialist who immediately said, "You have never had Carpal Tunnel, symptoms don't fit. It is Progressive Muscular Atrophy". Back to original neuro. who repeated testing and said he didn't know what was wrong. He was referred to the neuromuscular disorder neurologist who felt that it could be a few things as his presentation was a bit murky as were the EMG and NCS testing results. Said maybe ALS but not too high on the list, maybe MMN, maybe a couple of other things including CIDP but some of the tests were not totally indicative of that diagnosis either. His lumbar puncture showed elevated protein which was a good sign in diagnosing. He was given a loading dose trial of IVIG--2 Grams per kilo. of body weight and he responded very well to that loading dose which for the neuro. was a very good sign that it was not ALS. So he receives IVIG every 3 weeks since 2007. Wasted arm will always be there and the foot drop, but the IVIG prevents more deterioration.

Second opinions are always desirable from what we learned. And the skill of the EMG and NCS administrator are critical skills. If I could go back, I would have gotten the second opinion right away. Hubby had to take early retirement in the midst of all this because he just couldn't do his job and didn't know what the heck was wrong with him. I saw lots of other insidious changes i.e. poor concentration, no energy, fasciculations in his arms and legs which scared me, and just general apathy and slower thinking. All of those things are much improved, but he is just not the sharp tack he was before the disease hit him. We have a new normal too with lots of role reversal over heavy labour around our little farm. He just cannot do what he used to do. So he is the bling in the relationship now LOL.

Laurel
 
Hi daughter,

The statin drugs are so good and so bad. I used to believe they should put them in water because of the positive effects they have on the vascular system, making the vessels more flexible, less likely to break or crack.
I have since changed my personal opinion.They deplete the bodies source of Coenzyme q10, so if one suffers a heart attack, there will more likely be heart MUSCLE damage.It is important to take supplemental Coenzyme q10 if taking a statin,an MD would need to tell you what dose,depending on your body, dose of statin,etcetera.
Now, they have extended the warnings on Zocor80mg.I personally believe this will soon be extended to all statins.They have been proven to cause Muscle weakness,may cause Muscle damage,and I have read two articles in periodicals regarding"ALS type symptoms."I wish I had these to post.
Many people are statin intolerant because of the weakness they cause, and other symptomology.Never stop taking a drug without the advice of an MD.High Cholesteral
may lead to a heart attack/stroke.
It's Catch 22. I wish someone could provide more information.Especially on supplements that do lower cholesteral w/o side effects.
There is also another problem(sorry).Docs and drug companies have an understood partnership.
 
My father was finally diagnosed yesterday after a year of tests. Does the statin (lipitor) have any credibility as a contributer?
 
At this time, there is no proof of a relationship between statin drugs and ALS. Many of us are hoping that there will be a definite answer to this question sometime soon, but there is no definite answer yet.
 
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