First Post - Looking for Feedback

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First Post - Looking for Feedback

Postby PapaBear on August 29th, 2004, 5:51 pm

This is my first post and I am looking for honest opinions from those that are familiar with the neuromuscular symptoms that I have been experiencing.

I'm in my mid-thirties and my story began about 5 months ago when I noticed a rapid twitch in my left shoulder that lasted about 10 seconds. Coincidentally, this was about 2 hours after a good friend told me that he had ALS. The twitching spread over the next two weeks as my anxiety went through the roof. The explosion of this symptom prompted me to make an appointment with my GP. A series of blood tests were performed to rule out some of the usual suspects (thyroid, lyme, vitamin deficiency, etc.). After these test were negative, my GP recommended an SSRI for anxiety (one possible cause) and a visit to the neurologist. His exact words were "if it isn't anxiety, then it must be neuromuscular".

The SSRI made things worse initially, but ultimately helped me to settle down. The symptoms persisted, however, so I discontinued the medication as the side effects were a little rough. The twitching has now localized to a few primary areas (e.g. left calf, right thigh, left elbow) and rarely bothers me.

Over the past two months, however, I have noticed new symptoms including a week feeling in my left leg, muscle stiffness in my right leg and a strange burning feeling in my left hip upon waking. Oddly, the week feeling in my left leg seems to disappear while running long distances.

Knowing the hallmark of ALS is weakness, I've been diligently monitoring my exercise routine and have been able to make some gains with both my running and my weightlifting. For example, I was able to put in about 30 miles last week including one 4-mile run at 6:30 pace (never let it be said that fear doesn't motivate).

While this objective data helps to alleviate my apprehension at times, the worry always seems to return. Earlier today, for example, I noticed that I couldn't pick up objects with my toes as easily as my wife and kids. Ordinarily I’d chalk this up to a history of broken toes but now I can’t help but wonder if something more sinister is at work.

I've had a neurologist appointment scheduled for some time now (unbelievable backlog) and have found it increasingly difficult to focus during the wait. Encouraging words are great, but any honest feedback would be welcome.
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syptoms

Postby graberc on August 29th, 2004, 6:07 pm

Your syptoms sound a lot like every one else on this board. I sorry to hear about your friend and ALS. . .

How Old are you btw?

Anyway. . .A neuromuscular evaluation is a good idea. . .just to rule out everything. But your syptoms don't sound like ALS . . .sounds like BFS to me.

The hallmark of ALS is weakness, and it is suppose to be profound. Usually starting with not being able to grip things (arms), or wrist drop, or ankle drop.

Plus. . .your reflexes would be all out of wack, and would prevent you from running. Did the GP check your reflexes?

5 months with no weakness is def. a great sign! and is very reasuring!
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Postby puggriffey on August 29th, 2004, 6:30 pm

I can tell you I am experiencing many of the same symptoms even today, WELL after several successful and clean EMG's and neuro visits. I am confident yours will turn out well too.

I can't explain the "weak" feeling left leg - I have it too, and I swear some days it feels like the "beginning of the end". Toss in some weird stomach muscle sensations, like they're quivering or "faltering" sometimes, and you'd swear you're heading south fast. But, like you, my leg "weakness" seems to go away during periods of exercise (although it hurts like the *beep* sometimes) and I'm true weakness-free after almost a year of these annoying symptoms. Welcome to BFS - it's a truly strange, but fortunately benign, ride.

If you are beginning to focus on your symptoms and get impatient while waiting for your neuro visit, you are likely making things worse on yourself. Even if you don't FEEL "stressed out" about this, your mind is playing some powerful tricks on your body deep down. I'd consider taking a benzo or even visiting the ER and seeking neurological assistance there if you feel yourself getting worse. The mental freefall is the hardest thing to overcome in the end, in my humble opinion.

I wish you luck - it's funny, when you read through here, you ALWAYS find many who are feeling the same exact thing as you. It's hard to believe they really are sometimes, the way so many of us feel we know EXACTLY what you are going through, but once you believe it, it can be quite reassuring.

JG
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Postby Johnny on August 29th, 2004, 9:24 pm

PapaBear,

Your running times are most impressive! I have heard (and it makes sense) that it is most improbable to make strength gains while having ALS.

I'm sorry to hear about your friend. What were his initial symptoms of ALS and how was he diagnosed?
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Thanks All

Postby PapaBear on September 4th, 2004, 11:45 am

I wanted to thank everyone for their input and respond to a couple of the follow up questions.

Graberc – I’m 37 and just seeing that in print makes me realize that I’m starting to get on in years. I never thought (or felt) that age was affecting me at all until this twitching (and other symptoms) started back in April. The GP did test my reflexes during two visits that were about 1 month apart. At the first visit they seemed normal and symmetric. Unfortunately, they were a little jumpy and seemed asymmetric at the next visit (1 month later). Of course I knew by that point that asymmetric reflexes were bad and couldn’t help but become extremely anxious when the doc went to hammer my left knee.

Puggriffy – It is reassuring to hear that others have some of the same symptoms. My twitching and anxiety has kicked up a notch or two (I believe) as I wait for this neurologist appointment. I hope that the upswing in symptoms is due to “mind tricks” but there is a part of me that can’t help but fear the worst.

Johnny – My friend is just a few years older than me and unfortunately his initial symptoms were twitching. He was diagnosed after 2-1/2 years and really didn’t exhibit any noticeable symptoms until then. I’m very happy that his progression has been slow. Nevertheless, my own mental state would be better if my only first hand knowledge of ALS wasn’t the slow, twitch onset variety that hit a person my age.
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Postby amy_twitch on September 4th, 2004, 2:35 pm

Hi Papa Bear,
Hope your anxiety level is calming down. Your neuro appt will be very beneficial to you, no doubt.

Given what you wrote about your friend Johnny having twitches as his first sign of ALS, you might need to describe a little further to avoid confusion on this board.

Did Johnny have any EMG testing early on during his twitching? With ALS, his EMG should have been abnormal--even early on.

You mention: "Nevertheless, my own mental state would be better if my only first hand knowledge of ALS wasn’t the slow, twitch onset variety that hit a person my age".

I don't mean to question your experience, but what you speak of is extremely uncommon. Weakness almost always precedes or accompanies the twitching. Even if weakness doesn't come first, the EMG should show abnormalities from the get-go. The chances are practically zero that someone with twitching and a CLEAN EMG to develop ALS (from studies I've read about on this board). The one case I've heard of--about one person from Canada--was truly an anomaly.

Therefore, I'm very curious to know exactly how Johnny was diagnosed. Did he not get an EMG until two and a half years into his twitching? Your clarification would be very helpful. Thanks--

Hope you feel reassured very soon!

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Postby PapaBear on September 4th, 2004, 7:47 pm

Hi Amy

I’m sorry if I caused undo alarm. I’ll try to do my best to clear up any confusion that I may have caused with my earlier post. First of all, Johnny was the name of a previous forum member - not the name of my friend with ALS. I don't want to worry any friends that Johnny may have on this board :).

As for the diagnosis of my friend – I am not certain of which tests he had and when he had them (I could ask but I’d rather not pry into the details). My guess is that he did have a neurological exam and an EMG early on and did not pass either. I am certain that it took 2-1/2 years from the onset of twitching to a positive diagnosis but I believe that this is somewhat common as many lesser diseases have to be ruled out first. Looking back I did notice some of the other hallmark symptoms going back a while but did not think much of them at first. Later I suspected that something was wrong but had no clue as to what it was until finally learning of the diagnosis.

To reiterate, I am not saying that this person had a clean neurological exam or a negative EMG only to have fairly common symptoms turn out to be ALS. The only reason it is even remotely distressing to me is because I have some of the same early symptoms that he had (i.e. twitching) and have neither a neurological exam nor an EMG under my belt. I do have 5 months or so of symptoms without “profound weakness” but I know that this does not put me in the clear. If it were 12 months or more of symptoms without weakness I’d probably feel fine.

I hope this helps.
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Postby amy_twitch on September 4th, 2004, 8:24 pm

Hi PapaBear,

Thanks for the clarification---and I'm sorry about the name goof. I was reading too fast I guess..oops.

You have a TON of support here while you await your neuro visit!!! I, for one, felt a huge weight off my shoulders after I had the EMG. I had it about 8 mos into my symptoms....and I'm just about at my one-year point now. You fears are very justified given your friend's diagnosis. However, with your physical history over the past months--I'd say you're going to be just fine.

My best to you--don't worry and have a great weekend!!

Amy
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Hi

Postby dont on September 4th, 2004, 8:44 pm

Papbear,

Can you please advise what symptoms you noticed when looking back and how long you think maybe you noticed them into the twitching?

It sounds and correct me if I am wrong, that you feel that your friend knew about his diagnosis for a while before he told certain people.

I am very sorry about your friend.

I for one get very anxious when I read posts like this because I have not had an EMG. I have been twitching for 8 mo's with no weakness.

Thanks for any info you can give us. Some of us on here really get freaked out about posts like this and please know that it's not to slight your friend's diagnosis at all.

Most of us, especially those without EMG's are trying to stay mentally afloat and it helps to receive clarification when we see posts like this.

Thanks,

Karen
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Postby PapaBear on September 5th, 2004, 8:53 pm

Hi Karen

You are correct - my friend did know about his condition for some time before letting others know. I don't have all of the details but it appears that he was one of the rare few that noticed twitching as his first symptom. This is not to say that other symptoms were absent. While it took some time for those symtoms to become obvious to the casual observer, they may have been there right from the start.

As I mentioned earlier, it took about 2-1/2 years for him to get a diagnosis. I don't believe a neurologist ever told him during this period that he was fine. As is customary with ALS, there were a number of tests that needed to be run in order to rule out lesser diseases. From what I know, the final diagnosis did not come as any surprise.

In hindsight I probably should have anticipated the anxiety that my friend's story would cause and elected not to share it. I did not intend to upset anyone rather to explain one of the possible causes for my own concerns.

Remember, you have 8 months of muscle twitching and no weakness. From what I've heard weakness usually preceeds twitching in ALS or at worst presents within 6 months thereafter. Moreover, you have been evaluated by a qualified neurologist who said that you are fine. As someone with only five months of twitching and no neurological evaluation I'd be overjoyed to be in your position.
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Postby Stephanie on September 5th, 2004, 11:43 pm

5 months w/no profound weakness is a good sign. That is not characteristic of als at all. You have the added fears resulting from knowing someone w/als which I can relate to. I know from experience that worrying about weakness makes you actually feel weak. The mind is powerful. Don't pay attention to perceived weakness-many of us get this. It really sounds like you have nothing more than bfs. Many people twitch a lot but most often the only people that worry & go to Dr's about it are people that know about als. It's even written in my neuro's medical book. Hang in there, you will be ok.
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