Are these ALS symptoms?

  • Yes, it sounds like ALS to me.

    Votes: 5 71.4%
  • Undecided

    Votes: 2 28.6%
  • No, it doesn't sound like ALS to me.

    Votes: 0 0.0%

  • Total voters
    7
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fl4ian

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PALS
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Hi Guys.

I'm waiting for an appointment with a neurologist for ALS like symptoms, and so I've been lurking here for several weeks.

My symptoms started 9-12 months ago. The first thing I noticed was weakness/fatigue in my right hand while twisting a connection onto an air cylinder. Slowly but surely, my hands, ams & legs get fatigued with less and less exertion. Fine motor control with screws etc. is getting difficult, and my left hand is better at it than my right, so sometimes I switch off to my left hand for those things (although I'm right-handed). Holding things up like hanging picture or holding a banner, tires my shoulders, arms, and hands. They tire out and get crampy and burn like after a too-hard workout, but not as bad. Writing with a pencil or pen is pretty hard to do because of the weakness/fatigue. Typing, though, I can still do pretty well. My fingers and forearms tend to stiffen up quite often, along with the muscles around my mouth and jaw.

I can't take as deep a breath as I used to be able to, and get out of breath easily after going up stairs (I never used to be like this). I used to play a euphonium so I had alot of tidal volume capacity, so maybe that's why I notice it. I get tired of chewing sometimes, esp. if it's a long meal or it's a chewy food. Swallowing has become a little more deliberate, especially with dry or pointy foods (like crusty breads), or if it's a large bite. I used to be able to drink a glass of water almost as fast as you could pour it down the sink, and I know I'd choke if I tried that today. I've noticed some difficulty finding notes singing, as if before there were definite stops for the notes, and now it's much less defined, like I'm sliding around a little more. Some words make me think I have an oversized tongue: words like "refrigerator" or "remember". They end up coming out on the slurry/sloppy side, like I can't enunciate the syllables.

Over all, I feel pretty fatigued, and more clumsy and uncoordinated, and find myself dropping things. Sometimes I lose my balance, but not from an equilibrium related cause, because I'm not dizzy or light-headed, but it feels like my muscles just aren't working together. I get twitches and jerks in my muscles from time to time, as well as a feeling of "pinging" or "jittering" in my face. Like ALL the muscles just beneath the skin of my face are doing an uncoordinated writhing. These twitches, jerks, and jittering are not necessarily every day, but definitely when I'm really tired after a too-long day.

Now, (if you're still reading :)), I thought these things were just subjective, like I was noticing them or making them up or something. I was trying to find a way to make them objective, to REALLY find out if these symptoms were real. I had gone to a chiropractor a couple years ago and he tested my grip strength, so I went and had him test it again. I was around 12% weaker in my left hand and about 15% weaker in my right hand. After about 10 minutes of non-use, we tried it again, and this time my right hand strength dropped ANOTHER 7-8% while my left hand stayed were it had been (at about 12% less strong than orginally 2 years ago). To me, this was objective evidence of my subjective feelings. So I made an appointment with my family doctor who assessed me, and ordered blood tests including a lyme titre, and a brain MRI. At this point we were working on possible diagnoses of MS, ALS, and Lyme disease.

The blood tests came back normal, as did the MRI. And from what I understand, MRIs usually show evidence of MS, and the Lyme titre should show evidence of Lyme disease. I never really thought I had MS because many of the things I've read indicate that common symptoms for MS were things that I am not experiencing: limb numbness/tingling, muscle and/or nerve pain, vision problems, etc. However, I did think that my symptoms could be Lyme, and with the blood test normal, I'm thinking my chances of having ALS have increased.

So, I have two questions for you guys (I say guys, but mean gals too :))...

1) In your experience, do my symptoms resemble the symptoms of someone with ALS?
2) Are my assumptions about the normal blood and MRI results correct? In other words, do having a normal results make the other diagnoses less likely, and ALS more likely?
3) What are other medical problems that could mimic these signs/symptoms? What other rule-outs or differential diagnoses are there for my collection of symptoms?

I really appreciate your time and energy responding to this.

---todd
 

BWk

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What do you mean by "pinging and jittering "in the face, boy that's a new one for me.Barry
 

fl4ian

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i mean like one or several muscle fibers are twitching, but there are a ton of these all happening with no coordination between them. like minature firecrackers exploding. not enough fibers to really contract the muscle, but enough to make it kind of squirm. it feels like if you had a piece of thread, and you pulled it tight enough to make it break; the breaking is what it feels like when it "jitters"... i'm not sure if what i'm describing is a fasiculation or not.
 

BWk

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I used to get a lot of twitching under my eyes so much it made my eyes hurt bad by the end of the day. Do you get tickles in your face [like someone drawing a feather across your face]? Barry
 

Teej

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welcome

Hi there!

I am fairly new to this forum also. I do not have ALS, but my husband does. I am not sure how to answer your questions without taking away any hope you might have.. There is an illness called "Kennedy's Disease" that closely mimics ALS, but is not fatal. It requires a DNA test done out of Texas, so see if your doc will "ok" that. Also Mercury Poisoning is known to have similar symptoms. Make sure a hair analysis is done, as well as all the usuals. It took several months to rule out everything else with my husband...Yes you are correct when you say that the more the tests come back "normal" the stronger the likelihood that this is indeed ALS...Your symptoms are very similar to my husband's. His onset was an inability open small sauce or ketchup packets, and difficulty standing on his tippy toes with both legs. He has all of the other symptoms you mention. Have you had any cramping? My husband had that quite frequently and thought it was "charlie horses". You are in my prayers and thoughts as you seek answers. Blessings, Teej
 

fl4ian

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Messages
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PALS
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State
Ohio
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Worthington
BWk said:
Do you get tickles in your face [like someone drawing a feather across your face]? Barry
No, I haven't had any tickles in my face or anywhere else. Just the jittery jumping feelings of the muscle fibers. Although we may be describing the same feeling. I could see how the feeling of squirm could be interpreted as a kind of "tickle".
 

fl4ian

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PALS
Country
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Ohio
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Worthington
Teej said:
Hi there!

I am fairly new to this forum also. I do not have ALS, but my husband does. I am not sure how to answer your questions without taking away any hope you might have.. There is an illness called "Kennedy's Disease" that closely mimics ALS, but is not fatal. It requires a DNA test done out of Texas, so see if your doc will "ok" that. Also Mercury Poisoning is known to have similar symptoms. Make sure a hair analysis is done, as well as all the usuals. It took several months to rule out everything else with my husband...Yes you are correct when you say that the more the tests come back "normal" the stronger the likelihood that this is indeed ALS...Your symptoms are very similar to my husband's. His onset was an inability open small sauce or ketchup packets, and difficulty standing on his tippy toes with both legs. He has all of the other symptoms you mention. Have you had any cramping? My husband had that quite frequently and thought it was "charlie horses". You are in my prayers and thoughts as you seek answers. Blessings, Teej
Hi Teej.

Thanks for responding, and I'm more concerned with getting a proper diagnosis than taking away hope at this point. And especially thanks for the Mercury and Kennedy's info, I will definitely look into that.

Any cramping that I have is much less severe than a charlie horse, and usually accompianies or follows the burning (like lactic acid buildup) after exertion of the muscle. I don't remember having started cramping for no reason, although I frequently wake up sore and exhausted like I shoveled 24 tons of gravel with only a shovel and a wheelbarrow. There is no likely cause for this that I can tell, so I suppose it's possible that I'm having some mild cramping in my sleep that I'm unaware of.

I appreciate your help, Teej. You and your husband will be in my thoughts too.

---todd
 

BWk

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Lactic acid

Todd, Have you checked out the lactic acid excess possibility? Was watching a program on discovery health channel, sure was messing up this young child with excess lactic acid, was because of some gene defect. Don't remember all the details, though. Barry
 

musicsmiles

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Response to Barry

Hi,
I'm very new to this forum. My husband was diagnoised with ALS. His symptoms started out with a very hard time swallowing pills and his food. His voice become very raspy, and he started twitching around the eyes and mouth. He is very depressed now and I don't know how to bring him around. Any suggestions.

musicsmiles
 

Al

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Hi musicsmiles. Welcome to the forum. Sorry about your husband but you may find some solace and useful information here. Have you read the post What keeps you going? It and others might help you out. There are literally hundreds of posts in the search portion. Try typing in a few key words to see what is there. Your type of question has came up many times before. AL.
 

fl4ian

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PALS
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Ohio
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Worthington
BWk said:
Todd, Have you checked out the lactic acid excess possibility? Barry
Hey Barry.

Thanks for the suggestion. I will look into the possibility, although if it were a genetic defect, I would think it would have started from day one of life. This is a relatively new thing for me (inside the last 12 mo.)... thanks for the tip, though.

---todd
 

fl4ian

New member
Joined
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Messages
8
Reason
PALS
Country
US
State
Ohio
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Worthington
musicsmiles said:
Hi,
I'm very new to this forum. My husband was diagnoised with ALS. His symptoms started out with a very hard time swallowing pills and his food. His voice become very raspy, and he started twitching around the eyes and mouth. He is very depressed now and I don't know how to bring him around. Any suggestions.

musicsmiles
Sorry to hear musicsmiles. And unfortunately, I don't have any suggestions, however, as AL said, try a search or just browse some topics that look interesting. You will learn alot about the disease and how it affects people, and maybe from that you will get some ideas. I would think that his physician would want to consider some type of anti-depressant medication, but i'm not a doctor.

Take care.

---todd
 

BWk

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PALS
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grant
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new mexico
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coping

Music, If you guys are religious folk try to get him to counsel with your pastor. Also there are mental health services in most towns who have excellent counselors[usually]. It's taken me a year to come to terms with this illness so it's not easy. Make sure he gets in his sleep at night that keeps me going pretty good. Hope this helps some. Barry
 
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