Neurologist: Experiences with ALS

[AntwanBostonB]

Hello,
I am a neurlogist and I have been in practice for seven years. I have had many a patient unfortunately with ALS, but also some with other conditions like CIDP, MMN, and benign fasciculation syndrome. About one and a half years ago I noticed some atrophy in my hand and I was having some weird aching and burning in my left arm. Now the atrophy actually has been present for eight years, but is more noticeable now. It is an area on my APB muscle of my left hand. I still play the piano and even take lessons from a university professor. There is no weakness at all in my hand and no atrophy or reflex changes elsewhere.
But I have fasciculations everywhere and they worsen when I am tired or at night or anxious, usually when I am on call at the hospital. sometimes they awaken me from sleep. They occur in my legs, shoulders, side, thighs, face, and hands.
Being a neurologist who specializes in neuromuscular diseases, I've done many an EMG on myself. I always find a few fasciculations, if I look hard enough, but never any other signs of denervation. I've also seen a specialist in Indiana who has assured me the atrophy in my hand is nothing and I have Benign Fasciculation Syndrome.
But, it is driving me crazy! My father died at age 62 a few years ago. He left behind a lot of projects that he didn't have time to complete. I don't want to be like him! I've paid off my house early just "in case." I wish there was a way to be sure I don't have ALS or MMN or a strange slow motor neuron disease. I keep telling myself not to worry, but it is always in the back of my mind.
I've also noticed that if I work out at the gymn I have less fasciculations. Also neurontin seems to help as does a beer occassionaly.

Thanks for listening,
Anthony

 

[Pandora]

You sound so sad!! Don't the EMG's reassure you? Have you ever heard of anyone with a clean EMG who got ALS? You need to listen to the advice of so many people on this forum and get back to enjoying life--I know it is hard as I also have had BFS for 6 years --and i didn't have the luxury of testing myself with EMG's--i just had many doctors look at me like I was crazy when i described the symptoms--I hope they will go away some day--as does everyone else on this forum--Did you have side effects from the neurontin? how much does it help--i want to take it too. What dosage do you take? Good luck to you!!!
Pandora

 

[JennFiction]

Sorry to hear about your dad, Anthony. I bet that adds fuel to the fire for your own anxiety about dying. I was curious though....is it your left hand that is atrophied? Are you right-handed? Could it be that your hand has always been like that but you didn't notice until you went looking for it? Have you tried to tone it up with strength exercises? If so did they work? I can relate to the burning muscle feeling in your arm....I've gotten that same feeling before, and I've heard others here describe it as well.

I went to the neuro because my right calf was much smaller (almost 2 cm.) than my left. She measured it, thought it was odd, checked for weakness (of which I have none), and said that usually you see that in people that have hurt their back (but I hadn't....). She seemed unconcerned. Diagnosed me with BFS...didn't even bother with an EMG. She told me that if you can feel your twitches, it almost undoubtedly BFS.

I think being a neuro yourself, and seeing people with ALS, and realizing what an awful way it is to die feeds your fears quite a bit. Most of us here don't have to deal with that kind of situation, luckily! I would be a basket case if I did .

You know you are fine....if something develops in the future, deal with it then! Don't sit around waiting to die when you have so much living to do! Have you tried therapy? Or maybe anti-depressants? Maybe you would benefit from those things....help to ease your anxiety. I hope you stop worrying soon.

Take care, Jen

 

[yummylips]

If someone came on here and said he was an accountant but wasn't, I wouldn't care. If someone came on here and said he was a librarian but wasn't, I wouldn't care. If someone came on here and said he was neurologist and there was no reason to doubt that statement, I wouldn't care. But if someone comes on this website of all places and says he is a neurologist and there is every reason to doubt that, I care very much. In fact, there are a couple of regulars on this board who I am sure are not what they claim to be but I have kept quiet because there was no obvious harm (so far ) caused by their duplicity.

I would have thought some of you, especially those who go into hysterics everytime something slightly questionable comes up on this board, would understand the tremendous harm someone can do under the false auspices of being a neurologist. I would have thought some of you would have learned something from your experiences earlier this summer.

I am not going to go into the reasons I believe Anthony is not a neurologist as that would just be seen as another callous, personal attack. I think those reasons are obvious, especially to someone like you Alonzo. I will just remind the group that there are millions of people on the internet. Some of those "people" make a hobby out of seeing how much harm they can cause to others. Those people inevitably show up on any website. They will be here as well and you better be looking for them. I am not saying Anthony is one of them but I could invent a persona tomorrow, register as a new user on this site and have half the group ready to jump off the nearest bridge in a day.

My concern is for the people already on this board. Admittedly, tact is not my forte, perhaps due to my background. Maybe I should have said "Please forgive me but I have some doubts that Anthony is a neurologist and if that is true, I worry about the effect he will have on some members of the group". Unfortunately not my style. Neither is the "holier-than-thou" approach of a couple of the "I feel your pain" crowd. As I said earlier, a little more pragmatism and little less sensitivity lecturing from the more pious members of this board might be useful.

I sincerely apologize to Anthony if I have hurt his feelings. I will keep my personal opinions to myself from now on. I hope a couple of the other members (won't mention names-don't want to be insensitive) will do the same.

 

[Alonzo]

I think you hit the nail on the head yummy_lips, and maybe some of us took it wrong, myself included.

What you said you in your last post that maybe should have said; "Please forgive me but I have some doubts that Anthony is a neurologist and if that is true, I worry about the effect he will have on some members of the group" is probably how most of us would have said it, and we (and Anthony) mistook your words as an angry accusation.

People don't like being accused of things. I agree that anyone can come on a board like this and wreak havoc, and we get them from time to time and deal with them. I also agree that there are people out there that just do this kind of stuff to get attention. We agree on a lot of things. It was merely the way you presented your doubts about Anthony that didn't seem very nice and which is why some of us came back at you for sounding harsh.

It's how things are said that make all the difference in the world and how people react to other's. You said "tact is not my forte", but when you are dealing with other's and you don't want "attitudes" or flack back from other's, sometimes tact is a must. I don't take kindly to people that use no tact when talking to me in person, and I'ma big enough boy to tell them to their face when I think they need to be a little nicer in their "tone" of voice.

Everybody has the other side in their family. My other side is my older brother, who is an Oakland Chapter Hells Angel, and has been for like 20 years. You wouldn't want to talk to people like that without "tact" or it would probably be the last words you ever said. That is kind of my point here. If you don't want to upset other's, you need to use "tact" and have consideration for other people's feelings, otherwise you should probably expect other's to get upset about it. "Tact isn't your forte", and taking accusations isn't mine... and isn't many other's either, so someone needs to make a small change here... a little tact goes a long way.

I agree wholeheartedly about all of what you said though, so don't get me wrong. I agree that it is VERY damaging when someone comes on here claiming to be a neuro or a doctor or claiming that their doctor said "this and that" when you know it's wrong, especially when it puts all of us in an unjust panic.

 

[yummylips]

Actually, I have dealt with a lot of people exactly like your brother and I always found that they respected candor more than pussyfooting around- but that is neither here nor there. I get a little short sometimes. Like you I suspect, I don't really much care what other people think, although I will respond when things "get my goat". I'm trying to turn over a new leaf. The comment about Anthony was meant more as a warning to others than as an insult to him. Anyway, you are correct-this thread has gone off on a tangent. My fault. Sorry.

PS- I have spent hours and hours trying to figure out what instigated these symptoms. I can think of only three things that occurred near the time they appeared: 1. The Atkins diet, 2. Periodontal surgery a few weeks earlier, and 3. Using Lipitor. I have pretty much discounted 1 and 3 but I was wondering if you have heard anything regarding #2. I have read recently that perhaps some neurological problems may be related to gum disease and surgery. I did take a course of antibiotics after but I will have to check with the pharmacy as I don't recall what it was. I know oral bacteria are suspected in other ailments, including heart problems. Have you ever encountered this theory?