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momtotwo

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Hi, I am new here and I have been experiencing strange symptoms for about 3 weeks now and am waiting for appt with neurologist. I had some questions that I was hoping someone could answer. 1. With ALS does the muscle weakness come first or the twitching? 2. Yesterday I ended up in the er because my legs were hard to move and I could hardly walk. Today they are a little sore and a little heavy but much easier to move. Is this something that would improve today or would it get just get worse. 3. Both of my hands feel a little uncoordinated and the index finger and thumb of both hands are hard to control and feel stiff but my grip is fine, does this happen with als? 4. Does anyone have normal reflexes that has had symptoms of and been diagnosed with als? Any information would be great, I am being told not to worry but it is hard and I can't seem to talk to anyone who would have these answers. THanks
 

braveheart

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Hello, I have had abnormal reflexes for atleast 10 years, slow but steady weight loss.
I think my drop foot and fasiculations started last August about the same time.
I believe the fasiculating (twitching) precedes muscle weakness,
I understand that ALS symptoms do not come and go like in MS for example, and that there is no set order of symptoms in ALS, varies for so many of us.
I had "restless leg syndrome" a few years ago that wasn't RLS but ALS.
I have weakness as the muscles in my leg and arm muscles deteriorate, stiffness if I sit too long and when I get out of bed.
My index finger started moving itself around before it became weak.
I hope this pieced together info. is of help to you, best wishes with the Neurologist, let us know what you find out.
 

momtotwo

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thanks so much I am really worried and half the time I think that als is not it and half the time I am convinced this is what I have. My thoughts are with all of you that are going through it and also with everyone who is worried they may have als. I have read some of the threads and this seems like a very supportive group. I will keep you posted on my neurologist visit-they said it could be up to a month. How do you wait that long and still stay sane?
 

marlo

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Hello Momtotwo,
As Braveheart said,, this disease is different with everyone. Just try to keep your mind busy with other things while you wait for the test results. My twitching started first and i get very stiff if i sit too long in one spot. Also mornings i am stiff. I have the bulbar als so i seem to have more trouble with my breathing and voice than the muscle as of yet. I pray you well and feel free to ask all the questions you want. I am new to this site too, but the people have been very helpful to me. So i am sure they will be to you also.
 

braveheart

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Right now I am recovering from major jaw realignment on the 20th of Feb. I have a lot of numbness/sensitivity that may never recover because of my age (49). So for now I have to wear elastic bands 24/7 for 2 weeks, I can say that the wait to be back to normal is not a wait I want to endure but I will pray for you,what is your name? You keep me in your thoughts however you do in these situations and we will see each other through our waiting. I can't imagine you having to wait for a diagnosis, I was fortunate and found out really quick. See if you can press the powers that be, is there an ALS specialist or a really experienced neurologist in your province? Hold on tight, make your plan to be busy and focused on other things until you get answeres. An MRI will rule out MS and other problems. An EMG will test your muscle health, a blood test will look for other types of health issues causing your symptoms. God bless you as you wait since that is what we do on our medical system, I am still thankful for it despite it's flaws.
 
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Al

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Hi mom. You have two good things going for you. First to me it doesn't sound like ALS. It usually doesn't come on and present harsh symptoms in 3 weeks. Second of all in Vancouver you have Dr. Neil Cashman who is recognised as one of the best ALS Neurologist's in North America. When you see your Neuro ask about a second opinion from Dr. Cashman. I know he is affiliated with UBC but am not sure of which hospital. It shouldn't be too hard to find him. Try not to worry. I know it is hard to do but coming from someone who's been there done that and most of us here have done it try not to worry. Worrying about something that might happen is not good for your state of mind. Try to stay calm and get the tests, see the Docs and then if you have to worry than at least you can have productive worrying.
Take Care. Al.
 
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momtotwo

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Thanks so much. My name is Jamie and I am 30yrs old. I am glad to here that this doesn't present so quickly. I am waiting for the results of my blood test and trying to look after my two young kids( 16 months and 3 1/2yrs) while I am having trouble using my arms and hands and walking. It is a challenge. My poor husband isn't sure what to do for me. The neurologist in my area is on holidays for two weeks but I will do some research and see if there is another in town. I've been told it could be anxiety but I have only been anxious since this started. I will let you all know what I find out. Thanks so much for thinking of me. Jamie
 

linken

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To mumtotwo

I`m 33, and am starting to get sympthomes which looks like ALS too. I think I know what you are going trough, I have a 2 year old son myself and am terrified.
 

braveheart

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Hello Linken,

Do you have any additional symptoms other than fasiculating and "clumsiness", what do you mean by clumsiness?

Have you seen a specialist yet?

Being terrified is an awful place to be emotionally, I hope you can find calm while you wait, your son will benefit from you not being terrified.
 
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Carol Deboer

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Hi Jamie and Welcome,

I agree with Al. I do not believe that als would present itself in 3 weeks, however, something is going on. Do not think the worst until you see the doctor. Henry had a sore thumb and weak wrist for a couple of years before other symptoms started to present themselves. We thought he had carpal tunnel. So, sit tight and be rest assured that we will all be here for you no matter what. Good luck.

Stay Strong, Carol
 

Al

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Carol are you back from down south or are you just checking up on us from distant places?
 
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