Old 02-26-2012, 08:01 PM #1 (permalink)
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Default Very worried that I have ALS: please help

I am a 45 year old mother of two girls and all of my symptoms just started out of the blue mid January 2012 and have been getting worse. It started as joint pain (elbows,wrists,knees and ankles) and a burning pain from elbows to wrists and in calves as well as occasional mid upper back pain and overall fatigue. I also felt that my throat was sore, like I was getting a cold, only I never got that cold. I should add that I am not a hypochondriac and normally visit my family dr. once/twice a year. I went to my Dr. in Jan and she basically blew off my symptoms attributing it to my work, I am a dental hygienist. She did some general blood work as it was one year since my last blood work and everything came back nomal. Two weeks later I went back to her because I started getting twitches in my left leg. She thorougly examined me and tested my strength and reflexes, all normal. She sent me for more blood work to check minerals in my blood and a chest x-ray, again, all normal. Over the next week my left leg felt different, tingling in toes and a hot feeling almost like a pulsating blood flow feeling. I blacked out for a split second at work . I took myself to the hospital where they have referred me to an internal medicine dr who took extensive blood tests (10 vials taken), all normal. My twitching seems to be everywhere, ankles, thighs, shoulders, outer part of upper arms and buttocks and back of leg. Sometimes you can see the twitches, other times they are very fine, feel like creepy crawlers constantly moving. My lump in throat constantly feels like someone is choking me, yet I can breathe and while it feels uncomfortable swallowing, I can swallow both liquids and solids no problem. But this tight feeling in my neck is very scary, my neck feels stiff like someone is pressing their fingers into the notch in the middle above your collar bone.

I seem to feel these creepy crawling (fasciculations ? maybe) in my neck ALS. In terms of weakness I feel that my left leg is weaker than my right, but I have not tripped or fallen and have no evidence (so far) of foot drop. My manual dexterity (so far) is fine. I do notice that my arms feel heavy and tire easily when I lift them, however, this feeling comes and goes. When I am at rest I tend to feel these twitches more frequently and think that they are also in my abdomen, possibly diaphragm area, but I am not having any trouble breathing. This new Dr. that I am seeing has scheduled an ultrasound of my thyroid as he said that it feels slightly enlarged, although my thyroid bloodwork came back normal. I will be having an MRI of my brain in 2 weeks and I will be seeing a Neurologist later in March.

I have been sick with worry and cannot get through a day without thinking that I may not live to see my 5 year old daughter grow up, or my other daughter realize her dream of becoming a pediatrician.

My husband is hoping as we all are that this is not ALS, but I have never been sick longer than 1 week and have never had symptoms like these. All I do is cry when no one is around to see and hear.

I just need some support and prayers. Thank-you
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Old 02-26-2012, 09:12 PM #2 (permalink)
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Default Re: Very worried that I have ALS: please help

joy2,
Hang on, take a breath...you are getting way too ahead of yourself. Just because you have never in your life been sick for more than a week, does not automatically mean you have ALS as you referenced to at the end of your writing. You have just started to have problems, and I am sure they are being exacerberated by anxiety if you are already thinking that you are not going to see your daughters grow up!

Now, on to your symptoms. You definately have an array of symptoms but they do not point to ALS. Blacking out, is not a good thing obviously...I think I would be more worried about that then the creepy crawling feelings. If you are blacking out randomly you need to take a tilt table test.

Next, creepy crawly and twitching sounds more like Benign Fasciulation Syndrome...look it up on search engine and you will find a website with all the info you need there..not saying you have it...but sounds like this is a possibility you and your gp should be looking into.

Testing takes time...it is good that your blood panels have come back okay so far. MRI will rule a lot out or take you to a different direction..also neuro appt. will tell you a lot too. We can't diagnose you or help you anymore than to say to wait, listen to your dr.s, and keep fighting for an answer.

ALS is the last test on the line...not first..., and by the symptoms you described, I personally would say I do not believe that you have ALS. Find a way to relax before your next tests...and look into that blacking out episode.

Good luck to you.
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Old 02-26-2012, 09:13 PM #3 (permalink)
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Default Re: Very worried that I have ALS: please help

Joy2, I replied but it went to the moderator...may take a while to show up. Just try to relax, take some deep breaths, and enjoy your kids...the symptoms you described are not Indicative of ALS.
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Old 02-26-2012, 09:25 PM #4 (permalink)
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Default Re: Very worried that I have ALS: please help

Normal reflexes point away from ALS as do your sensory issues (tingling, pain, etc...). ALS symptoms do not start globally but rather focally, one place at a time. The hallmarks of ALS are muscle weakness and atrophy due to lower motor neuron death and spasticity, cramps and hyper reflexes due to upper motor neuron death.

Odds are greatly in your favor that you do not have ALS but I'm just some guy on the internet and not an MD.

P.S. (not PZ),
Notice I said nothing about muscle twitches as they are not listed in the criteria for an ALS diagnosis.
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Old 02-26-2012, 09:29 PM #5 (permalink)
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Default Re: Very worried that I have ALS: please help

My husband had twitches but he didnt feel them, I did ...at night. He kept falling. His legs didnt listen to his brain. Your symptoms are alot different. Prayers are with you. Hope you feel better soon.
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Old 02-26-2012, 09:46 PM #6 (permalink)
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Default Re: Very worried that I have ALS: please help

I appreciate all of your responses and pray that you are right. None of you made any reference to the choking feeling I have in my throat, so I''m hoping that my anxiety over this has created that one. I thought that persistent twitching as well as muscle cramps was a symptom I found while doing something that I shouldn't be, googling. The blacking out episode only happened the one time and for about 15 minutes afterwards I was dizzy and my eyes were blurry. That was about 2 weeks ago. Thank you for all you support and concern.
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Old 02-26-2012, 10:35 PM #7 (permalink)
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Default Re: Very worried that I have ALS: please help

Quote:
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None of you made any reference to the choking feeling I have in my throat, so I''m hoping that my anxiety over this has created that one.
Nobody has mentioned the choking sensation in your throat because it's not a symptom of ALS and we have no idea what's causing it. Could be anxiety. Could be reflux. Could be tonsilitis. Ask your doctor about it.

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I thought that persistent twitching as well as muscle cramps was a symptom I found while doing something that I shouldn't be, googling.
Twitching and cramps can be a symptom of ALS. However, they would be accompanied by clinical weakness and problems with your reflexes if they were caused by ALS. Twitching caused by ALS, in the early stages, is so mild that patients don't even feel the twitches and they wouldn't start and spread throughout your body in a matter of days.

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The blacking out episode only happened the one time and for about 15 minutes afterwards I was dizzy and my eyes were blurry. That was about 2 weeks ago. Thank you for all you support and concern.
This isn't an ALS symptom. Could be caused by dozens of easily treated causes.

Stop g o o g l i n g your symptoms and let your doctors do their jobs. And get some help for your hysteria. Anyone that makes the self-diagnostic leap from twitches to ALS is far too interested in the rare and deadly side of medicine for their own good.

Good luck. Have a nice life.
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Old 02-26-2012, 10:54 PM #8 (permalink)
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Default Re: Very worried that I have ALS: please help

Joy 2, I agree with all the above. My advise is to stop worrying as it will not change a thing! Except to take away precious time lost which you could be enjoying the life you now have with your husband and children. Wait to see what doctors have to say. Be patient you can do nothing but choose to think positive until otherwise told different. It may take time to figure it all out, but they will and I hope it amounts to nothing or curable.
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Old 02-26-2012, 11:11 PM #9 (permalink)
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Default Re: Very worried that I have ALS: please help

Joy, great advice here, I also don't think that your symptoms point to ALS. Have you been anywhere where you could have been bitten by a deer tick? Lyme Disease can be very hard to diagnose, and it does come with a slew of neurological issues, along with pain in joints, etc.

Good luck in your search for answers, but please stay positive, and don't worry yourself needlessly.
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Old 02-27-2012, 11:47 PM #10 (permalink)
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Default Re: Very worried that I have ALS: please help

I also thought about Lyme disease especially since my husband's car was totalled after he hit a deer. However I was not in the car when that happened. I did see the car after, which was full of deer hair but I doubt I was bitten by a tick. We mentioned this to the Dr. I am seeing and he said that it wasn't a possibility and I was not tested for it.

I know that one of you commented that ALS usually presents as weakness and atrophy along with muscle cramps and twitching. What I would like to know is can it present the other way around. My left leg started off with cramps in my calf and thigh, then after some major twitching and what may be fasciculations as there were 2 different kinds of twitching going on, I felt burning pain in left leg and both ankles, some tingling in my toes, and my leg definitely feels different walking on it, as if it is weaker and possibly stiffer. This feeling has not gotten better since I first noticed it in beginning of February. I have these same cramps in my outer thighs of both legs, calves of both legs, and lower arms and elbows, along with twitching but so far only notice weakness in left leg.

I apologize if I am sounding hysterical. I chose to post on this forum as I felt I would receive more accurate information than what I can find over the net. I am not asking for a diagnose from you, as that's what my dr.s and tests are for, just some information about the typical presentation of this horrible disease that unfortunately has no cure.

Thank you again for your comments
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Old 02-28-2012, 12:29 AM #11 (permalink)
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Default Re: Very worried that I have ALS: please help

Trfogey, I appreciate the straighforward no-nonsence approach to your responses. The way you respond to my concerns as well as those of others here is exactly how my husband deals with my fears. The last thing I want to do is belittle what anyone is going through by asking my crazy questions. If I wasn't so worried I wouldn't be posting and would just wait patiently until I have had further tests done. However, it is not in my nature to remain calm and wait patiently for anything, I have my wonderful husband for that.
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Old 02-28-2012, 12:30 AM #12 (permalink)
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Default Re: Very worried that I have ALS: please help

"Typical Presentation", Everyone is Different. Let the doctor's figure it out........Just my penny's worth. Hope your feeling better soon.
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Old 02-28-2012, 06:31 AM #13 (permalink)
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Default Re: Very worried that I have ALS: please help

Just an aside... Humans pick up deer ticks the same way deer do - from grass and weeds where the ticks hang out, waiting for a nice 'host' to wander by. They don't really care whether that host is a wild animal, pet, or human..
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Old 02-28-2012, 05:09 PM #14 (permalink)
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Default Re: Very worried that I have ALS: please help

Quote:
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I know that one of you commented that ALS usually presents as weakness and atrophy along with muscle cramps and twitching. What I would like to know is can it present the other way around.
If you have muscle cramps and twitching caused by ALS, you will also have clinical muscle weakness and reflex problems in the affected muscle. You may not notice them -- a trained neurologist will.

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My left leg started off with cramps in my calf and thigh, then after some major twitching and what may be fasciculations as there were 2 different kinds of twitching going on, I felt burning pain in left leg and both ankles, some tingling in my toes, and my leg definitely feels different walking on it, as if it is weaker and possibly stiffer. This feeling has not gotten better since I first noticed it in beginning of February. I have these same cramps in my outer thighs of both legs, calves of both legs, and lower arms and elbows, along with twitching but so far only notice weakness in left leg.
Another indication against your condition being ALS -- how fast it started and spread. If ALS started and spread that fast, the people that had that type of onset would be paralyzed in a matter of days and dead in a matter of weeks, just like in the days of the polio epidemics. The fact that you are not stubstantially crippled in your left leg right now points away from ALS and toward something like BFS/BCFS, or some type of post-viral problems.

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I apologize if I am sounding hysterical. I chose to post on this forum as I felt I would receive more accurate information than what I can find over the net. I am not asking for a diagnose from you, as that's what my dr.s and tests are for, just some information about the typical presentation of this horrible disease that unfortunately has no cure.
The typical presentation of ALS is a sudden mild functional weakness in an extremity. In the hands and arms, it's usually a finger that stops working properly (can't curl or straighten) or a thumb that won't pinch or grip tightly. In the legs, it's usually weakness in the shin and ankle which causes the patient to drag their toes on the ground while walking (dropped foot). In the bulbar region, the weakness is displayed in slurred speech and the inability to move food around in your mouth properly with your tongue.

Once ALS has presented in one extremity, it will spread out into the rest of the body -- a process that takes weeks, months, or years, not hours or days.

I've given you information about the typical presentation of ALS and pointed out where what ails you doesn't match up with ALS. Are you ging to accept this and start looking toward some other cause for your problems (like BFS) or are you an "atypical" case that needs more convincing?
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Old 02-28-2012, 07:02 PM #15 (permalink)
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Default Re: Very worried that I have ALS: please help

I have a question. Is it possible that the weakness that I experience in my left leg, thigh area, is from part of the muscle atrophying. I did feel a ton of twitching in that area, very fine twitches, around the time my left felt weaker.This leg feels stiff in the quad muscle area. I now experience the same kind of weak feeling in my outer arms when I lift them, more on the right than left, except that feeling comes and goes. Will be seeing a neurologist later this month and I was told that he would be the one to order the emg if he felt it was necessary. Thanks again
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