Forum War - Ernies MS Diagnosis

[Ducky]

Just last week, I was feeling so much better about my symptoms. I had found this website and so many of these posts helped to allay my fears about MS and Parkinson's. I had never worried about ***, because my symptoms never seemed to point to it... or did they?

After reading the post on this site where the forum-equivalent of WWIII broke out, I learned of Ernie and his unfortunate dx. While the details were vague, it got me to thinking (dangerous, I know) and for the first time ever I truly began to fear ***. I know my fear is irrational, but it does have some logic and that's what worries me.

My initial symptoms in March of 2005 involved body-wide migrant tingling and what I described as a "dull ache" which pulsated a bit and would come and go. That ache seemed to settle in my hands after the tingling began to subside. My left hand especially felt "off" -- kinda tired and achey. At the time, I'd definitely say it felt weaker than the right.

Since then, the pain and tingling had slowly subsided over about 2-3 months. The perceived weakness in my left hand also subsided and it began to feel normal. My body-wide twitching began in August of 2005 after my MRI had already shown that I did not have MS.

Now everyone says that twitches are nothing to worry about if there is no accompanying weakness. However, when the neurologist conducted his tests, he did note that the grip of my left hand was indeed weaker than my right. Not by much, but enough to notice. I didn't think much of it at the time because I was more concerned with the twitching. Plus, from my perspective, my grip seemed normal.

I should also note that I referred to my twitching as "muscle spasms" when I told the neuro. Only recently have I come to understand that muscle spasms are not the same thing as twitching. So maybe he would have been more concerned if I had said "twitching". As it was, he said I was healthy and sent me on my way without an EMG.

Since then, I've dealt with the constant twitching through the winter (although not always persistent) and very little in the way of pain or tingling. In March of this year, my symptoms flared up more so. The tingling returned, but not as bad as the first time around, and that migrant dull ache also returned, this time more pronounced. Again, I feel that dull ache the most in my left hand, although I do feel it many other places too. Could this dull ache be musucle cramps?

That weak feeling in my hand came back too, but it comes and goes. Consequently, I began asking my coworkers to allow me to perform the grip test with them (where I squeeze their index and middle finger on each hand as hard as I can). The three of them that "tested" me all indicated that my left hand definitely seemed weaker, but not much weaker.

My finger-jerks have been in my left hand as well (hence my former fear of Parkinson's) and I had one in my right hand last week too. Maybe my left hand is just a hot spot for benign activity, but what if (and I truly hate saying the anxiety-causing "what if") this is a very slow moving case of ***?

That "what if" scares me. A lot.

And I can't talk to my fiancee about it, as much as I might like to, because it will upset her. Normally, she is quite strong. But this subject hits too close to home. Her mother died from *** only eight years ago. She still cries sometimes. I do my best to console her. How unfair would life be to allow her future husband to be taken by the same? But life isn't always fair...

Granted, the stats are on my side. And I have noticed no other weakness. And I do not have a problem with fatigue (except in that hand when it is acting up). And I know that this would be a very slow, very strange progression of the illness. Strange, yes. But not unheard of. My symptoms are consistent with *** if it is a slow progression. Tingling is not a common side effect, but it does happen.

Many of you have been diagnosed with BFS. I have not. Many of you have had clean EMGs. I have not had an EMG yet. I do have an appt. with a different neuro in about a month. Maybe he will put my mind at ease a bit. I do plan to push for an EMG. If he deems it unnecessary, I guess my mind will be put at ease to a degree. But I don't think I will ever be able to relax until I am positively diagnosed with BFS.

Right now, I see all of you with that dx as the lucky ones. I hope luck will be on my side too.

~ Brian

P.S. For those of you who enjoy giant walls of text, I've described a very detailed progression of my symptoms here, in my first post:

 

[MarksmanS]

Brian,

I officially dx you with bfs. The "what if" stuff is pointless projection. Look at the facts - given the time, your clean neuro visit, etc. aren't you MUCH more likely to have some condition other than als? Isn't it far more likely?

As well, I read into your story tremendous anxiety. Testing grip strength and the like demonstrates that you are incredibly fixated on this. Believe me man, I know that pain and have been there on numerous occasions.

I would recommend that you see a psychiatrist so that you can discuss the medical issues along with getting meds that will take the edge off. I did it and it was a *huge* blessing.

Peace there,
Mark

 

[ytewestGo99]

Ok, so, check it out. I'll just make a bunch of blanket statements and then back them up with quotes from top neurologists.

* ALS doesn't cause a person to have pain
* ALS doesn't cause tingling, numbness, or any other sensory symptoms
* Weakness in ALS doesn't come and go but is a debilitating weakness that progresses relentlessly
* Twitching is not indicative of ANY neurological disease that neurologists know the etiology of.
* A neurological exam ALONE is enough to rule out ALS fears without having to have an EMG
* You have been having symptoms long enough that if it were anything serious, you'd be in pretty bad shape at this point, not just, "well, my left hand feels weaker"...

I have a much stronger left hand and I'm right handed, go figure ... and my right leg is my dominant leg but my left leg has bigger quad muscles with better tone. It really depends on how you use your muscles. Just try throwing a baseball with your dominant hand and then your other hand, ANYONE who does that alone will see a HUGE difference. I can kick a soccer ball 10 stories high with ny dominant leg. With my other leg, I'm probably good for about 10 ft. You know what I'm saying?

Anyway, here are the quotes. and BTW, the type of "weakness" you are describing is typical of BFS but not of ALS.


"ALS does not give a patient pain, so I would not think he has ALS. Muscle weakness, fatigue, cramping, without sensory changes, an abnormal EMG that shows positive sharp waves, fasciculations and maybe fibrillations are the hallmark of ALS."

"We worry about fasciculations when they are accompanied by objective muscle weakness, muscle atrophy, and no sensory symptoms."

QUESTION:
"4-WEAKNESS WITH ALS IS NOT MINOR AND PROGRESSES RELENTLESSLY.?"
ANSWER:
"4.Yes"

"Some of the symptoms you have (vibrating, bubbling sensations, etc) are not related to the fasciculations. They are NOT symptoms of ALS, which is a motor disease. In my experience, most people with these symptoms are found to have underlying anxiety. I can't say whether the anxiety is primary (that is, no apparent cause) or secondary (because you are worried about the other symptoms). Many people with anxiety-related symptoms do not experience the usual sensation of anxiety and it may come as a surprise."

"Unless there is EMG evidence, fasciculations are not diagnostic for any disease that we know the etiology of. Benign fasciculations occur without EMG changes or muscle weakness (not "perceived" weakness but a REAL debilitating weaknes). They go away on their own (most of the time) and do not increase your chances of coming down with ALS."

"The disease (ALS) does not affect the person's ability to think. It does not produce abnormal sensations (tingling or numbness) or loss of sensation."

"In general, weakness progresses steadily with no periods of improvement or stability ..."

"How many people suffer from benign fasciculations, and how often do they last on average? Sporadic fasciculation is incredibly common, occurs in the majority of normal individuals off and on. Some individuals are more perceptive to these twitches and tend to report them, sometimes from fear of having a serious neurological problem. Most experts agree that a subset of individuals have more prominent, widespread, and persistent fasciculation than should be seen normally. These people often diagnosed to have the benign fasciculations syndrome. This syndrome is obviously quite common, but a prevalence figure is not available. One hundred and thirty seven individuals with benign fasciculations were identified and studied at the Mayo Clinic over a period of 28 years. Of these, 121 were available for a follow-up interview after a mean of about seven years; none had developed ALS, and about half had had a significant improvement. Interestingly, about 16% of the cases have a viral infection preceding onset of symptoms, and about 20% have emotional stresses."

"Muscle fasciculations and weakness can be signs of ALS (and many other disorders), however you are having prominent pain symptoms as well which would not be typical of ALS."

QUESTION
"5 Do random jerks of fingers, arms, mouth signal ALS?"
ANSWER
"5.No"

"In the case where there are no findings of a neurological disease (usually meaning a normal neurological exam, normal laboratory values of routine blood work), a medical history of no chronic neurological diseases or trauma, the diagnosis by exclusion is benign fasciculations. They cause no damage, either muscular or neuronal, and they can wax and wane in their presence. Fatigue and anxiety can make them worse. They can present for days to years. They can be localized or generalized over the whole body. Sometimes they follow a viral illness, but sometimes they just seem to show up."

NOTICE IN THE ABOVE QUOTE THAT BFS IS DIAGNOSED AND ALS IS RULED OUT ON EXAMINATION ALONE. NO EMG NECESSARY

-------------------------------------------- End of quotes -------------------

Remember that ALS is a motir neuron disease not a sensory nerve disease. Typically in ALS the patient has debilitating weakness and the twitching follows the weakness when the affected muscles have become weak and atrophied. This is REAL clinical weakness that is debilitating and can keep a patient from holding their fork to feed themselves, climb a flight of stairs, button their shirt, etc.

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Here are the symptoms of BFS ...

What are the symptoms of BFS?
BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non-visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka “Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.

What is the difference between "perceived" weakness and "clinical" weakness?
A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating. When it’s in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won't lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can't be brought back to life.
Fatigue and "perceived" weakness is common with BFS and can cause weak or rubbery legs, difficulty raising an arm or leg into the air one day, but not the next day, a drained feeling with no energy and even actual "weak" feelings where your arm just feels like lead and you have to rest it constantly. The difference between these kinds of BFS weaknesses from ALS weakness is that BFS weakness (which again isn't really true weakness at all) will get better in a couple of days, where ALS weakness is continually progressive and NEVER looks back. A neuro can tell a case or clinical weakness associated with ALS the minute an ALS patient walks through the door. By the time you notice the weakness and/or twitches associated with ALS (enough to warrant making a doctor's appointment), you would already be a few months into the disease and a good clinical exam will find problems you weren't even aware of. BFS "weakness" on the other hand, is pretty much only fatigue and although you may "feel" weak or drained-out, if push comes to shove and you put aside the pain, fatigue, stress or whatever else you have, you still have your real strength. I mean if a car was coming at you and you had to jump out of the way, you still could, where an ALS patient couldn't move at all.

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Whew ...

God bless ...

 

[EyeoftheWild]

Hey Chumley, wasn't it just a post ago that you were feeling super? I was actually worried that you might leave the forum and JG would have no rival in regards to length of post written. JK I have written a few lengthy posts of my own.

Way back when all this started, in utero, oops that is too far back. Okay, so I will just go back as far as when I began twitching. When I first contracted bfs, or whatever caused bfs, my left side always felt worse than my right. I seemed to list to the left when walking, my left foot was forever dragging the ground, it twitched more, and ached more. I have had bfs for more than a year now, and I still feel the same. I walk a couple of miles everyday, work out 3 times a week, and so obviously I am well, but the weak feeling persists. It doesn't worry me, although there are times, when it is a bother.

I have never had an emg and I don't want one. However, you must do what you think will best suit you. I think an emg is a good idea, so long as you understand that in many cases here it has provided only temporary relief. It would seem that the root cause of health anxiety is not predicated on the external, but rather the internal.

You have been affected by WWIII, as you put it, and that is sad. However, good new abounds here, and one need only go as far back as Carrie and Chris2's great last posts to realize that.

Brian, it sounds like you are doing all the right things re: your health. I look forward to hearing about your future, it sounds bright to me. Are you sure about the marriage thing though?

Cheers,
Basso

 

[Ducky]

Sue,

I am right-handed. It did occur to me that maybe my weaker left hand was always that way because it wasn't dominant, but I dismissed that logic in my haze of anxiety. Your comment about the military training did help to put my mind at ease a bit. Thanks


Tewest,

I had actually reread much of the 'BFS in a nutshell' post to help calm me down before I created this post. But sometimes its hard to accept when you're listening to that nagging little "what if", as I was yesterday. But in the context of your post, with your words of encouragement, I really tried to accept these facts and remind myself that the odds are so overwhelmingly in my favor that I have no reason to worry. Thanks to you as well.


Basso,

Your "flowery prose" infused with a touch of humor does a lot to help the people in this community, and I am no exception. Your post made me laugh at a time when I needed a good laugh.

And yes, despite numerous warnings from many guys I know, I am sure about the marriage thing!


And to Mark, Chris, and others who may respond with some kind words of wisdom and encouragement, I thank you all.


As for myself, I am feeling more at ease today. My fiancee always knows when something is bothering me, and she coaxed it out of me last night. Of course, it led to tears on her part remembering the course that *** took with her mother. But she did try to console me and remind me that my symptoms were not really like anything her mother experienced.

I really hate irrational anxiety. It makes little sense to me.

I can add two plus two. It equals four. So why does my mind sometimes trick me into thinking it might equal five. After all, maybe one of those twos is really a three and someone made a mistake. It's possible, right? So two plus two could equal five. Uh-oh... time to worry...

I'm so logical most of the time, and yet my mind often deceives me when I least suspect it. In the face of all fact, I worry about the most unlikely conclusion. I supose it's my way of attempting to prepare for the worst. But I see how stressful and counterproductive it is. And yet I do it anyway... *sigh*

At least I have you guys to remind me that a two is really a two.

From this post, you'd probably think I was a mathematician. I'm actually in marketing/advertising, where brevity is key. Looking at the size of my posts, you'd never know it.

Anyhow, thanks again gang.
~ Brian