Question about ALS progression

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jkp

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Hello, I've followed this forum for a while. Everyone on here is so helpful and honest. I've watched other ALS forums where thats not the case. Thank you for being here :-D .

My wife was diagnosed April 14th this year with ALS. 1 year ago today, give or take a week, she was walking around, singing and doing what ever she wanted, no symptoms of ALS at all. Today shes confined to an electric wheelchair relying on our son and I for everything. She can't move her arms, hands and fingers. She can still move her leggs a little bit.

My question is;
Is this the normal progression for ALS. Her neurologist still hasn't answered this question for us.

Thanks, Jon
 

Al

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Hello Jon and welcome to the forum although I am sorry for the reason you are here. As you will no doubt find out there is no easy answer to your question. I know people that have progresses quickly like your wife and in my case 3 years later after diagnosis I am still walking and just barely able to hold a knife and fork. We are all different. Similar but still different with no 2 of us being quite the same. I know that is not very encouraging but hope it helps in some way. Feel free to ask any other questions that you may have. AL.
 

John1

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Hi Jon,

I'm sorry you have to find yourself here but welcome. You don't mention her bulbar progression (speech and swallowing for example) but the limb progression you describe is fast although still probably falling within the range of normal. I'm sure from your reading you have found there is a wide variation in progression rates.

-John
 

jkp

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Thank you

Al and John1
Thank you for your fast replies and the information. My wifes speach and swallowing have been seriously affected. She had a peg tube placed Aug. 3rd because she was choking with almost every swallow. Again, Thank you.
Jon
 

salma

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hi jon

Welcome to this Forum, Jon i came on this forum June 25,06 with same question.my father was diagnosed in March 20 of this year and u know, he progressed too fast and now his condition is same like your wife. He can't move his hand , arms and fingers.Our neuro. said there is a wide variation in progression rates. and it has different patterns. Someone has progressed fast and some one has slow.
 

CindyM

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OK I am finally going to jump in here with a personal question even though my symptoms are still mild. JKP I am sorry for the rapid progression of your wife. This must be a difficult time for all of you.

My own question has to do with symptoms that I consider more annoying than anything else, compared to what everybody else is experiencing. In fact, I am still awaiting DX even though they have ruled out every possible other disease. I have weakness in my arms, hands and legs but it only interferes with my ability to go to the gym, swim, row, and the like. I still work and for that I am grateful.

After we were able to document the weakness, my DR showed me where my muscles fasciculate. I got used to that. Now my newest symptom is spasms. I may have to give up driving since my legs spasm to the point where I cannot reach the gas pedal. Had to coast to the side of the road a couple of times last week. So my question is: what usually happens next? I say "usually" since, as GrampAL says, we are all different but similar.

So, to recap: my "progression" such as it is, is this; weakness, fasciculations, spasms. Can anybody tell me what comes next? Thanks for allthe support and info on this forum.
 

jkp

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What I've noticed

Hi CindyM,

I'm sorry you're having problems. I'll do my best to tell you what I've noticed with my wife but keep in mind you haven't been diagnosed yet. So try not to worry.

My wife has fasciculations above the waiste. I've noticed where these fasciculations are the worst, she gets weaker in that muscle group. She gets muscle spasms in her legs. The leg where these are most frequent, that leg gets weaker.
Her Dr. prescribed Tzanidine for her spasms. It helps but doesn't completely get rid of them.

I hope this helps. Keep in mind what Al wrote about everyone being different. What I've noticed with my wife may not be the case for you. I sincerely hope yours isn't ALS.
Jon
 

CindyM

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Thank you Jon. I actually feel rather calm. The reason they are being careful with a firm DX is that, though we can see where I have lost muscle, the loss is in my right hand and a few years ago I had an ulnar nerve transplant in my right elbow. That nerve feeds the spot in my hand where a muscle used to be, thus the decision to wait and see. I feel like there is really no sense in worrying. Worry can't solve anything, only time will tell. I also believe in facing facts, and right now I have an awful lot of symptoms, too many for even the most open-minded person to explain away. So my family and I plan for the worst and hope for the best!
 

JMH

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CindyM
Plan for the worst and hope for the best is one of the most hauntingly familiar sayings. Since my Dad was diagnosed I must have said this a thousand times. So sorry for the trouble you are having. My dad's progression seems to be very fast - it's scary. It seems like we just have to take it one day at a time and deal with each symptom as it comes up and find out what works best each time. Not much help to you I'm afraid - I've often wondered why the progression is so different with each individual. Dad's right leg and left arm/hand give him the most difficulty, but swallowing and phlegm are fast becoming a concern. I've been told that it's unusual for a patient to have trouble with both (they say it's usually one or the other) but we're finding that is not so in Dads case.
Best of luck to you...take care.
JMH
 

CindyM

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Thank you. Your Dad is lucky that he has someone who is willing to learn about his condition and able to help with his care. He must be a special guy!
 

John1

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CindyM said:
...After we were able to document the weakness, my DR showed me where my muscles fasciculate. I got used to that. Now my newest symptom is spasms. I may have to give up driving since my legs spasm to the point where I cannot reach the gas pedal. Had to coast to the side of the road a couple of times last week. So my question is: what usually happens next? I say "usually" since, as GrampAL says, we are all different but similar.

So, to recap: my "progression" such as it is, is this; weakness, fasciculations, spasms. Can anybody tell me what comes next? Thanks for allthe support and info on this forum.
Cindy, by "spasms" do you mean clonus or cramping. Clonus is a rapid spasticity that is not painful. I sometimes get clonus in my legs first thing in the morning when getting out of bed. I can sometimes stop it by pressing the spasming leg firmly on the floor. I get it more when I am cold and, as I say, first thing in the morning. Mine began about 2 years ago and varies but overall hasn't got much worse. If you mean cramping then my experience is that it lasted about 2 years gradually getting less intense, I guess as one loses muscle neurons to cause the cramping. In way, cramping, as painful as it is, is a good sign. I don't know what will come next other than continuing loss of strength. A note on your driving though. If you don't have clonus or cramping in your arms (I don't) you can easily purchase hand controls for your vehicle that will let you drive without the use of your legs. I have them in my wheelchair van. They are cheap, quickly installed and easy to use. I don't know what province you are in but Hertz has them available on their cars in Toronto for no extra charge if you want to try them out. Maybe all Hertz locations have them; I just happened to stumble across them (so to speak) at the Toronto airport this summer. One of the nice features of them is that able-bodied drivers can ignore them and use the foot pedals. For that matter you can use them only when you need them and use the foot pedals the rest of the time.
 

MtPockets

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Hi Cindy,
I started with severe spasms and charlie horses in my feet (Arch), then my calf muscles, then my thighs, and now my ribs. Over a period of 2 years now the spasms and charlie horse are finally going away, but so are my motor neurons that make them jump. I was DX May 11, 2006 after 2 years of symptoms.

So for me as the ALS progresses, the muscles loose tissue and the motor neurons stop firing so they stop jumping. The downside is I lost the use of those muscles also, so now I am in a wheelchair. I can walk a few steps if I lock my leg joints, use a walker or cane, and look like Frankenstein. The calf muscles have lost 6 inches in circumference just in the past year. I can still eat just fine, a few swallowing problems but, I am putting on weight around my stomach. Might come in handy later when I have more serious trouble swallowing. Trying to think positive about these things.

I have also lost muscle mass in my arms and find it very difficult now to lift myself off the couch into my wheelchair. I use a trapeze bar over my bed to help getting out of bed, but the muscle weakness in my arms is beginning to make this very difficult.
I've lost 30% of Lung capacity so I am on a Bi-Pap at night to help me breath.

I feel like I am progressing slowly, at least I hope and pray, and try to maintain a trust that God has a reason for everything in my life. He is my rock, my foundation, and my strength to get through this fight.

I hope some of this has helped. It seems like I may be just a little bit ahead of you on the progression of this terrible disease.

May God Bless You,
Capt. AL
 

CindyM

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Thank you both for such a vivid and helpful description. I use the search feature on this forum quite a bit and have learned a lot that way too. But your descriptions are clear and helpful. I like the idea of hand brakes, maybe I will rent a Hertz sometime to see how it fits for me. But wait-then I'd need to book a vacation, right? :-D Well, it is a lot of work to do all this research but I suppose it is the sensible thing to do! LOL

Seriously, though, I would say my hands cramp if I do anything too physical-like carry a small bag of groceries to the car or drive more than a couple of miles. My legs are spasming in the arch and calves like yours did, MT, and that seems to happen if I walk farther than a quarter mile or so, or if I make a lot of trips up and down stairs. It takes me a LONG time to get up a flight and sometimes I am not sure I can do it. So yeah, I can see the horizon and that's why I am glad I found all of you kind folks!
 

Kevinski

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Still not DX

I guess everyone is different to be sure. I have only speech issues, and this all started ayear ago. I have had two Emg's after the last one the neurologist still can not give afirm DX of Als. He told me he has seen 3 or 4 patients like me, all ended up having ALS but at a very sloqw progression. So I am thankfull for this, that I am not the norm for ALS. He said if I am walking around in Five years I don't have ALS, but just bulbar palsy. So who knows maybe I will defy the odds. Go back to the doctor in six months unless I have more problems. It is frustrating , because no one can tell you for sure what is going to happen to you. Take care and stay positive even though thats tough to do at times. ...... Kevin
 

CindyM

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Hi Kevinski - you sure are right about not knowing what is going to happen! When I get frustrated I think of my elderly Uncle up in Maine. For years he has said, "I don't need a fortune teller to tell me what my future holds. I know full well that every day I wake up I am a day closer to the undertakers because I have been dying since my Mamma brought me into this world. The only thing certain in this world is death and taxes!"

You need to hear it with a droll northern drawl in order to get the full chuckle. So, following Uncle Dusty's philosophy, I guess we may as well relax and have a little fun because the tax man will be here before the other guy arrives!
 
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