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DrewSmith1984

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Joined
Dec 7, 2011
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Learn about ALS
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US
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Ohio
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Lancaster
Ok, so long story short, I have been visiting the site for the past two years, or more accurately since I began to experience symptoms that I feel are indicative of some serious neurological disorder. That being said, I will go ahead and introduce myself and in the process describe the plethora of symptoms that I deal with on a pretty regular basis.

My name is Drew I am 27 and approximately two years ago, upon beginning college I began to develop body wide fasciculation’s that would range from the random thumpers to the non-stop annoying ones that take forever and a day to completely disappear. Naturally, since this was a new phenomenon I began to do a little research and it wasn’t long before I stumbled upon numerous websites stating that wide spread fasciculation’s can be an early sign of ALS.

Since that time, I have experienced many symptoms, most of which come and go, but never the less I still cant seem to shake this FEAR of the possibly having this dreaded disease. Below, in the bulleted points, I will briefly touch upon the symptoms that I have been dealing with.

•Fatigue: This, up to about one month was pretty much constant and it didn’t seem to correspond to the amount of physical work I did in the day and it was sufficiently reduced upon rest.
•Aches/ Pains: I get these every so often. They seem to appear out of nowhere and then disappear as fast as they appeared.
•TMJ: I hate TMJ (Just saying). This to seems to come and go and it doesn’t seem to correspond to an increase/decrease in my gabbing abilities. Sometimes it’s so bad, I can barely talk.
•Stiffness: Occurs body wide, comes and goes as it pleases.
•Perceived weakness: I get this off an on quite regularly. For instance, when walking down steps, my legs seem to shake, where as they never had before. I have no problem walking up steps. This lead to me closely examining/ comparing the attribute of my right leg (perceived weak one) with my left. Upon doing this I came to the realization that my right calf is approximately 1-1.5 cm smaller in circumference (measure at three spots) when compared to my left calf, I found this odd because I am right handed, so I assumed that I to would be right legged. I also noticed that when I squat and the back of my calf makes contact with my butt, there is a significant indentation that appears, which doesn’t appear on my left leg, so I fear that there may be some atrophy. Wanting to see if I could rectify this, I recently began to wear a 5lb ankle weight all day long, which I have had no problem doing over the course of the last few days, and I walk probably a couple miles a day.
•Difficulty talking (not related to TMJ): I get this sensation that my tongue feels thicker than usual and because of this I feel (even though nobody else seems to notice) that I have a distinct difficulty pronouncing and annunciating certain words. This to seems to come and go for no apparent reason.
•Difficulty swallowing: This to, comes and goes. It is like I have a slight lump in the back of my throat, somewhere above my Adams apple and it becomes more apparent when I eat something like a Ritz cracker that decrease the amount of saliva in my mouth/throat.
•GERD (Acid Reflux Disease): Don’t really feel that I need to elaborate on this. I will say that sometimes, when it really acts up, I will wake up in the middle of the night choking out a concoction of what I assume to be Acid, Saliva, and whatever I might have had to eat/drink before bed.
•Shortness of breath: Not much to say here. Comes and goes as it pleases.
• Body wide vibrations: Primarily, this seems to occur in my feet. However, if I have a pretty rigorous workout, I tend to get them all over my body.
•Numbness: This is difficult to explain. I woke up one day and I noticed that my leg was kind of numb; it was kind of like my right leg was partially awake and partially asleep, even though it did not have the pins and needles sensations. This lasted for approximately 2-3 months and right when I began to realize that this could possibly last forever it just vanished and since then (knock on wood) my leg has felt relatively normal.
•Recently I was looking at my right hand when I noticed that I had a slight dent in the middle part of my Thenar Eminence (don’t know the exact muscle) and upon further examination I; 1 realized that it definitely doesn’t occur on my left hand and 2 that below the little dent there is a larger divot that spans the length of approximately 2.5 centimeters, is about 1 cm wide and can only be seen when flexing my Thenar or holding my hand up to a light at just the right angle.
•Dropping things: I don’t know if I am actually dropping things more often or if its just that I am paying more attention to it since developing this fear of ALS. However, I notice that I seem to be clumsy with my hands (right hand in particular) and because of this I tend to drop things. Now, these things are not particularly heavy or awkward in shape and in fact most of them are relatively light things that I drop because I don’t pay attention to how I grab them. I guess this could have something to do with me being natural clumsy and up until now, I had no reason to really pay that much attention to it.
•Cloudy Urine: I seem to get this every once in a while and it doesn’t reflect the amount of water that I drink throughout the day. I also urinate quite often.

I cant really think of many more symptoms at this point in time, although I am sure that I will think of some more shortly.

Well, after reading that you are probably thinking “ Holy hell go see a doctor already”, well, in the past two years I have seen my GP two-three times and my Neurologist 3-4 times, both of which think that I am crazy. However, it’s hard to take their word when I inherently feel something is wrong. I have had a number of tests, which include the following:

•Thyroid: January of 2011. Results were normal
•Numerous blood tests January of 2011. Results were normal
•Clinical neurological Exam: February 2011. Results were normal
•CT Scan: February or March of 2011. Results were normal
•MRI: April 2011. Results were normal.
•EMG/ NCV: September 2011. Results were normal. Readings were taken from approximately 6-7 different spots on my Right Leg and my Right Arm (Both of which I see atrophy in). All the results were normal. I was wondering though, is it weird that my Neurologist wasn’t the person administering the test? I go to the VA and they have a specific type of doctor that ONLY does EMG/NCV studies.
•Clinical neurological Exam: September 2011. Once again all results were normal.

I don’t really know what else to say, I guess I am just curious to get some opinions (Should I worry of should I not worry)from people who deal with this dreadful disease on a daily basis. Please let me know what you think. I do know that over the course of two years many who are diagnosed with ALS go from being completely independent to being substantially disabled and that I probably do not have the disease, I am just scared and being just scared it starting to negatively affect my personal life.

Thanks,

Drew
 
The fact that you are walking around, feeding yourself whatever food you choose to eat, and are able to carry on a normal conversation without need of a special device is definitive proof that you don't have ALS. By the two years after symptom onset point for nearly all people that actually have ALS, there is substantially crippling of one or more limbs or the ability to speak. A substantial portion of people diagnosed with ALS don't reach the two years post onset of symptoms mark because their progression is so rapid that they die in less than two years.

You wanted opinions, so here are mine:

  1. You don't have ALS.
  2. Your doctors are right -- you are crazy.
  3. You should listen to them and get treatment for the crazy.

See you around.
 
Your neurological exam was normal!

If you have something wrong with you, it isn't neurological in nature.
 
This is just my personal opinion, I think you should be worried, very worried, but not about ALS.
 
Worry= to torment oneself with or suffer from disturbing thoughts; fret......Worry never robs tomorrow of its sorrow, it only saps today of its joy.....Worrying is like a rocking chair, it gives you something to do, but it gets you nowhere.....bottom line worrying Does Not change the future!
 
Sounds like you have a bunch of mild symptoms that you are trying to bunch together and create a syndrome. It's not ALS, I can't concentrate enough to read your long post, but if it was ALS, you would be using a device to write all that and taken most of the day!
 
Read my threads....

You would be in bad shape by now, get therapy, thats not an insult, i did. It helps.....
 
Do I think you have ALS? Nope.

Couple of things, though. You go to the VA. Are you a vet? Did you serve in the gulf war?

Cloudy urine can mean an infection. Frequent urination can be a sign of diabetes. Are you losing weight?

ALS doesn't normally cause sensory symptoms. But other things can. When you go to the doctor or come here saying you are measuring limbs, etc, it's very easy to just say health anxiety and move on to the next post. Here's my thinking on that one...even the hypochondriac can become I'll.

ALS does not come and go. A clean EMG in limbs with issues means no ALS...as there are no UMN signs either. Personally, I'd start with a private GP and go from there. And as already suggested, get some help with the health anxiety. When we are hyper aware of our bodies, we can 'see' things that aren't really there.

Some that served in the gulf seem to develop something similar to chronic fatigue and/or fibromyalgia. Good luck to you. My advice would be to ask your doc about the most troubling symptoms....not that list. They will ignore you and possibly miss something real.

In a nutshell..not ALS. Doesn't mean you can't find answers for the real issues such as frequent urination, cloudy urine and fatigue.
 
You might try a myasthenia gravis forum.

Because of various flaws in testing and/or lack of exhaustive testing, some of these people get nothing on any exam (and a lucky few of those get treated sort of as an experiment).

If you were to think you had that, you still might not get treated, but you might be more annoyed and not as frightened.

In really bad cases sometimes, doctors wonder whether some of those patients may have ALS before they do testing.
 
Now I know why I never come to the Do I have Als forum, people quit getting so excited over 7 hundred symptons please! If it was Als, you most certainly would be having problems writing all of this...
 
hi Drew

Question Why in gods name are you going to the va hospital .Were you in Iraq Iran Afghanistan .If so thank you .
When you went to the neurologist, did he or she see the dents in your hand and calf.or notice any of your complaints or concerns.
ALS doesn't come and go.And although some of the post were wrong and misleading .I would never say you do or don't have ALS. What I will say is there are doctors that graduate at the top of their class and some at the bottom and the worse ones are the ones that THINK they know what they are talking about that aren't doctors .
That being said .Do research and find a doctor who specialized in ALS if thats what you think you have and go by what he says and take the mystery out of what you have .

Going on with this heavy on your shoulders can effect your overall health and well being

Good luck
Pat
 
Drew, if rarely ALS does start with fasiculations, they are usually localized and weakness follow early.
I do not know which sites have you been to saying that widespread fasciculations are an early sign of ALS. Actually, neurologists opinions (like on MedHelp) say the opposite, that widespread at onset is usually benign. Its not likely that you would have denervation all over your body from the beginning. If you had, you would not be here today..

Look, I started with widespread fasciculations nearly 5 years ago, also when starting university. Today? They are still here, some things makes them worse, but I have not declined in any area.
Take care,
Bliz
 
The fact that you are walking around, feeding yourself whatever food you choose to eat, and are able to carry on a normal conversation without need of a special device is definitive proof that you don't have ALS. By the two years after symptom onset point for nearly all people that actually have ALS, there is substantially crippling of one or more limbs or the ability to speak. A substantial portion of people diagnosed with ALS don't reach the two years post onset of symptoms mark because their progression is so rapid that they die in less than two years.

You wanted opinions, so here are mine:

  1. You don't have ALS.
  2. Your doctors are right -- you are crazy.
  3. You should listen to them and get treatment for the crazy.

See you around.

your first paragraph is incorrect for many pals
you have no scientific facts that after two years people are using devices and would be unable to feeding themselves or carrying on a conversation
that is totally wrong
pat
 
TR

I know after being diagnosed with ALS many people go through stages .

Denial Anger and acceptance .Apparently you are still angry .Your disease will feed on anger .Accept and fight the disease not the poor scared people
Pat
 
Pat you are wrong. It is a well known fact that after 2 years some form of impairment is evident. Most bulbar patients die within 18-24 months after diagnosis. Fact. 80% of limb onset patients die in 2-5 years. Fact. Something would show up earlier than death.
Drew said his Dr.'s think he's crazy. Trfogey repeated it. That's not mean or angry. It's facts. I think you should find an outlet for your anger.

AL.
 
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