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MacD

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Jun 21, 2007
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4
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PALS
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AR
Hello everyone, this is my first post in these forums, but I have lurked in the shadows for several months reading many of your posts. I'm ready to post now, and it's gonna be long!
I am a 34-year old male who began experiencing muscle pain in both shoulders and both hips/thighs about 5 years ago. I believe that those pains may be attributable to wear & tear associated with years of playing sports and working out very hard. More recently (approx 9 months ago) I noticed some general weakness in my arms and legs and random muscle twitching. My wife and I went to Florida around New Year's. After we got back I noticed some extreme weakness and rapid muscle twitching in both legs as well as pain. I still wasn't really scared until I read about ALS, and found that muscle weakness accompanied with the fasics makes ALS a very likely cause.
I told my PCP about all of this. He agreed that the symptoms sounded similar to ALS, so we did an EMG in January. The results came back normal. In fact, the technician who performed the test said my muscles were firing like those of a 16-year old. Over the weeks to come, I began feeling extremely fatigued and dealt with some severe nausea. Changing the sheets on my 1-year old son's crib was completely exhausting. In February my calf muscles began tightening up. I looked like a zombie when I walked, and negotiating stairs was becoming a chore. Approx 4-5 times in Jan and Feb, my left arm from the shoulder to the hand went completely numb for hours at a time. Same thing for my left foot. Almost every day for 3 months an area on the side of my lower left leg went numb (especially while driving).
I'm very good friends with my PCP and kept him constantly updated on my condition. Even though my EMG was normal, he encouraged me to go see a local neurologist...hoping to give me some peace of mind. The Neuro put me through the usual paces. His only finding was fasics on the tongue (but he asked me to stick out my tongue, which I believe is improper). He told me to give 6 months to 1 year, and I would know for sure. Just what I wanted to hear!:)
So now I'm really beginning to freak out. I had never faced down the thought of death. Besides, I have a beautiful wife and child that need me...surely God wouldn't let this happen to me! Stress began taking a toll on me, and the muscle pain, stiffness, twitching, fatigue, and nausea all seemed to ramp up. I was desperate to find answers and believed that as badly as I had felt for over 2 months there was surely a good Neuro who could give me a definitive answer. So I scheduled an appointment at Mayo-Rochester. I was seen around the 1st of March. Dr. Hoover and Dr. Cutrer spent well over 1 hour with me listening to my story and again putting me through the paces. Strength, coordination, speech, tongue...nothing screamed ALS. They performed another EMG as well. By the way, at this point, I was so stiff that I could not make a calf muscle. Still the EMG was normal. The doctors informed that I did not have ALS, and theorized that all my problems could be the result of years of improper nutrition. Of course their closing comment was that it's always possible to test too early.
After getting back I continued to deal with more of the same. My doctor recommended some physical therapy which made matters worse. After PT, I would hurt so bad that I could barely stand up for more than a few minutes at a time. My arms were also beginning to ache and were becoming noticeably weaker.
Oddly enough, almost as soon as the fatigue and nausea began, it stopped. It has been well over 2 months since I've dealt with any noteworthy fatigue or nausea. In the past 2 months my strength also seems to be much improved from levels of 4-6 months ago. I am still stiff on occasion, but my calf muscles have loosened up a great deal, and I can again make a muscle with my calves. I seem to have lost no muscle tone in my arms or legs. My wife and I are moving into a new house, and I have been able to take many loads of boxes to the new place. My muscles are achy and stiff after several loads, but I'm not totally broken down and I don't think that would have been the case 4 months ago. I can lug my 22-pound kid all over without getting very tired. I also have no coordination problems. I can do the "drunk walk" with no problem whatsoever, and I'm still typing/writing very well. No problems swallowing.
That's the good. Now the bad...the twitching is still as much of a nuisance as it ever was. It's random and it's all over my body. I have particularly noticed it in the feet/ankle area. Many mornings after I wake up, the bottoms of my feet and my left ankle just twitch like crazy. I have noticed, however, that the twitching doesn't wake me up at night anymore. In fact, just after waking up my body feels very rested and as though there hasn't been a twitch all night long. Once I start my day though, here they come!
In the past 4 weeks, I've gotten this burning sensation on my tongue. It's not there all the time, and my speech hasn't been affected yet. Also, have felt my face going a little numb and a slight tingling sensation in various areas of the face.
So that's the whole of it. I came back home from Mayo intent on making the most out of every single day that God has graciously given me, and I think I've done okay in that regard. My wife thinks I'm going to be fine and that's what I want her to believe, so I've been living a bit of a lie for about 4 months but she's happy and that's all I care about! I apologize again for the length of this post, but hope some of you made it through and would be kind enough to share your thoughts. God Bless, MacD
 

vmd

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The fact that there are reversals of your symptoms or improvements, would also imply that it is not ALS. It is uncommon, and according to my neuro, not possible, to regain strength if it's ALS. The numb feelings are not normally an ALS symptom, as far as I know. In ALS the weakness is mostly asymmetrical at first. It starts in one arm, hand, or leg, and then it spreads.

I'm sure the others will offer you their opinions, but it doesn't sound like ALS to me.
 

ltr

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MacD - I can't tell you how sorry I am that you have to go through this. Boy oh boy do you sound like several of us on this forum. Many of us undiagnosed members have had your symptoms and I, like you, go through spurts where I feel great, though my stamina never goes back to where it was before this started (about 1 1/2 years). There are so, so, so many things that it could be related to. And I feel that you should check every single one of them! There is the western blot and elisa for lyme, testing for Isaac's syndrome, tons of myopathies and dystrophies and of course the good ol' benign fasciculation syndrome. Many of these come on later in life, though 30's isn't really later. Let us know how much testing you have had. You will be amazed at how many things can be checked and we will be offering you all the support we can. Good luck~Leslie
 

MacD

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PALS
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AR
Thank you all for the quick replies. I'm just beginning this dialogue with you, but I'm already greatly encouraged simply knowing there is a community of folks who are willing and anxious to know one another's progress and offer support. I've gonna get out of the office and go spend some time with family. Probably won't check back until I get back in the office on Monday as I don't want my wife to know that I'm even considering ALS as a possibility. I have more questions about your experiences. Thanks again!
 

brooksea

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Mac-

Agree with everyone else - doesn't sound like ALS. The numbness and pain could be myofascial pain syndrome. Once ALS starts it doesn't quit.

Sorry you're having such problems and hope you find the answer.

CJ
 

Jamiet

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Learn about ALS
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Louisiana
Hey guy......glad you've asked. We're here to help, ALS or not.

Ok.....two things i would say:

1) You have Lyme...
2) You have Lyme...


Get your blood and serum, send it to IGENEX. Do the 6050 test, which inc. the DNA, West. Blot (This is the impt. one) and the unreliable ELISA.

If you've already been tested for lyme, get tested again because i would put my next paycheck on it that you have lyme. Go look up the symptoms...and you will be amazed, even down to the tongue thing. Lyme causes tonge pain on a regular occasion.

You can go to lymenet.org and post on their discussion board.

Come back with any questions you may have, but if you have a good relationship with yoru PCP..he can help you get your blood. You have to be careful where you test for lyme. Don't let them send it to their lab, get yoru blood drawn and send it off yourself to IGENEX via FEDEX. Draw it and send it on a monday or tuesday.

YOu are more than welcome to ask any questions you want.

Rgds,

Jamie
 

MacD

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PALS
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AR
Hi Jamie,
Yes, I have been tested for lyme disease. Doc thought it was a strong possibility at first, but I'm 8-9 months into these symptoms and have never had a skin rash, fever, swelling of joints, or stiff neck...all of which appear to be primary symptoms of the disease.
I know that muscle stiffness is one of the earlier symptoms in ALS. My arms and legs were extremely stiff from Jan-Mar of this year (particularly the calves and biceps). In ALS, does the stiffness ever lessen?
Also, on my first visit to the Neuro, he looked at the muscle in my hand between the thumb and index finger. He said that Lou Gehrig, played his last season in the majors with that muscle basically non-existent (and still managed to hit 29 home runs). Anyone know if that's true? I know he was a professional athlete, but as weak as my legs were 6 months ago I couldn't have run from home to second base (let along swing a bat in 157 games). Anyway, as far as I can tell that muscle in my hand has not atrophied at all.
 

MtPockets

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Joined
Jun 1, 2006
Messages
1,528
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PALS
Diagnosis
05/2006
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Hi Mac

What do mean when you say muscle stiffness?

I was DX May 11, 2006 and have had symptoms for about 4 years now and never experienced "stiffness". Of course there are so many variations of this disease that no one symptom can tell you that you have it.

My primary symptoms began with muscle spasms, then progressed to muscle cramps I call "charlie horses", then to muscle weakness. It all started in my feet, moved to my calf muscles, then my thigh muscles, and now all over my body.

After 4 years I am now at the stage where I have lost the use of my leg muscles due to the destruction of the motor neurons that tell the muscles to move. I have to use a motorized wheelchair as my arm muscles are too weak to use a manual one.

The left half of my esophagus is paralyzed, I have difficulty swallowing, and I have lost 30% of my lung function. I use a Bi-Pap machine to breath at night while sleeping. I have had and still have muscle spasms all the time, but never any stiffness, unless you call not being able to move a muscle stiffness.

I hope this overview helps somehow, but know that each of us progresses differently. Some start with the tongue, and swallowing, that's called Bulbar ALS. Some have Limb onset ALS, which is what I have. There are many variations of this disease.

Do any of these symptoms seem to fit with what you are experiencing?

God Bless
Capt AL
 

janf

Distinguished member
Joined
Sep 23, 2006
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132
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PALS
Country
tift
State
ga
HI

I can say that my legs do seem stiff i walk like a zombie at times maybe its hard to really describe what it feels like . When I say walk I only take a few steps to go to bathroom and go from chair to chair . Jan
 

MacD

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Jun 21, 2007
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PALS
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AR
Capt AL,
Thanks for the response. I pray that God is doing something special in your corner of the world today! By muscle stiffness I mean my calves were so tight that they felt rock hard to the touch. I would try to make a muscle in either calf but couldn't because of the stiffness. My arm muscles were also extremely tight. I would compare it to having an extra strenuous workout with weights...except that after a workout the muscles relax after a normal recovery period. It took about 4 months for this stiffness to be relieved.

So your symptoms started with muscle twitching in your feet, but nowhere else? Among my first symptoms were muscle twitching, but it was not confined to any one area. I literally had head-to-toe twitching (and still do).

I have a few more questions. Hope you don't mind...it's just difficult sitting around waiting for that next Neuro appt and not knowing any answers. So here goes:

1) What causes slurred speech in PALS? As mentioned previously, I have had a burning sensation on my tongue. Also have been experiencing numbness/tingling of the face- especially the lips. If the lip numbness gets worse, I could see how talking could become more difficult. Is facial tingling/numbness common in PALS?

2) Coordination- I read where clumsiness/coordination is typically one of the earlier signs of ALS. When did buttoning a shirt become difficult for you? Personally, hand coordination has not been an issue yet. Several months ago I felt a bit unsteady on my feet, but that seems to have gotten better.

3) Hand/foot pain- While coordination has not been an issue, I have felt pain in my hands and feet...particularly in the tips of my fingers. It's not terrible by any means. However, I noticed after having a massage the pain is much worse, and I have that pins/needles sensation that lasts for hours.

I'm sure I'll have more questions, but that should do it for now. Thanks again!
 

MtPockets

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Joined
Jun 1, 2006
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PALS
Diagnosis
05/2006
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Hi MacD,

I still do not have slurred speech, thank God, but I understand it is coming as a normal progression of the disease. As the tongue is a muscle, it is subject to loss of motor control just like the rest of the body.

I have prepared for this already by downloading a program called "Model Talker", where you can record your own voice and use your computer to talk for you later when you are unable to speak. There are quite a few words to record for this program if you want to use your own voice. However, you can use the computer generated voice with this program and still communicate if you do not want to take the time to record your voice.

Regarding the hands, I have a symptom I call crab claw, for lack of a better term, where my muscles in my forearm spasm and draw my fingers and hands inward almost touching my wrist. It is extremely painful, and I have to manually have someone pull the hands and fingers back into a straight position. Sometimes this can be triggered just by picking up a spoon to eat.

I still do not understand the "Stiffness", you speak about. My muscles have lost so much mass that they are like Jello. Definitely not stiff, just the opposite.

Not all of us with ALS experience the same symptoms. That is what is so weird about this disease. It seems each of us has our own peculiar set of symptoms and they progress at different rates.

I have pain in my feet and legs at night especially because I never move in the bed at night because I have lost the use of my leg muscles. I sleep in the same position all night unless I wake up and my wife helps turn me. I think due to this, my legs are not getting the proper blood circulation and therefore I have pain in my legs. I also have leg pain due to a back injury at L4-L5 which cause my sciatic nerve to hurt.
I hope this helps.

God Bless
Capt AL
 

Wes_E

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Joined
Jun 17, 2007
Messages
18
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PALS
Country
US
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Texas
Capt Al, would you please post a link for the model talker. Will I have to make any adjustments to my laptop? I'm fairly computer illiterate so please use small words and in laymens terms:-D My speech is getting worse and is especially bad when I'm fatigued or have had a cocktail.

Thanks,
Wes
 

MtPockets

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Model Talker

The main page link is http://www.asel.udel.edu/speech/
All you need is a good microphone headset. I bought one with my ear phones that is one piece. You have two jacks one for the ear piece and one for the microphone. As long as your computer has those two jacks you are ready to go. Just install the program and begin recording the phrases.
I understand now that they ask people to send in a copy of some of the recorded phrases so they can make sure you are doing it right and adjust their program with the feedback. I'm not sure if this will always be free, but for now there is no charge for the program.
I use it on my main desktop computer and plan on putting it on my laptop after recording all the phrases.

God Bless
Capt AL
 
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