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New member
Oct 21, 2006
Loved one DX
This is my first time posting on this website. I just want to first say ...Thank you so much for the opportunity be a part of this website. We have so many unanswered questions at this point. We by no means have exhausted all efforts to find out what is going on it is just the waiting processes right now that is rather difficult. I was just wondering if any of you knew of other diseases that we could look at that would include all the symptoms my father has right now. All blood work is normal so we have ruled out metabolic stuff, MRI unremarkable. We were really hanging on to the hope of lymes disease that in sever cases can have very similar symptoms of early ALS but that has now come back negative. His symptoms include, extreme twitching in all limbs ( to the point where it is visible under his shirt), lower limb weakness, hand stiffness ( which dad says is due to bad arthritis ), stumbleing or tripping when walking and a decrease ability to problem solve. ( unexplaind weight loss also ) We do have more tests schedule in awhile but in the meantime I just want to research other possibilities. Any suggestions no matter how far fetched would be helpful at this point? Thank you again for the opportunity to be on this site and to ask for support and information as we begin this journey.

Can someone also tell me about fasiculations and ALS? I know that everyone can be affected differently but if you could give me some info it would be helpful. Does it come and go for some? Get worse or better at times? or is it just always there? If you have fasiculations/twitching all the time that never goes away- what can you do about it? Does it eventually fade as the disease processes progresses ?

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Dear "Daughter",
So many of us can relate to what you are going through right now...and it is awful, but you can make just have to find something good in each day, something to laugh about, and if it is ALS, the sooner you are able to accept it and realize it won't get better, then the sooner you will be able to capitalize on every moment you have together and create some good memories before it is too late.

As to other possible husband was tested for heavy metal toxins...did your dad have that test? They say it can mimic ALS. And has anyone said anything about PLS instead of ALS? Did he have an EMG and nerve conduction study? In my husband's case, those were really the definitive tests that ruled out PLS which is similar and really does pretty much the same thing, but the life expectancy is much longer than with ALS.

Those really are about all I know about. They pretty much started out with ALS testing to begin with because my husband's brother died with ALS just last February, and then we got our diagnosis in September. When his brother died, my husband had no symptoms, so this has hit us like a runaway train!

God bless you all during this're right, the waiting and not knowing is nearly unbearable, but you will be amazed at how close you can become through this process. We were already extremely close...kinda made everyone around us sick cause we were so in love, even after 38 wonderful years of newly weds. But I promise, we are closer now, and you really learn how to lean on each other for strength and encouragement. Of course I realize this is your dad, but the same thing can happen. It did with me and my aunt who had a brain tumor at age 92 and my husband and I moved in with her to keep her from going to a nursing home. During that last 9 months of her life, we had some really precious moments together, and I still treasure the memories, in spite of the awfulness of the reason we were given those moments. I wouldn't take for them. She was already like a mother to me...all my life...and that last 9 months, we just really enjoyed each other. Now with my husband, I've quit my job in order to spend every moment possible with him. His progression seems to be pretty fast, so we are trying to stay aware of what is really going on. You know...we don't waste time arguing or getting irritated with each other. Our time is too short for that. I pray you can enjoy some really special time with your dad after you recieve your final diagnosis. As horrible and insidious as this disease is, there are still blessings!

I hope I haven't been too blunt or hurt you in any intention is only to help and offer encouragement.

God bless,


Dear "Daughter",

The only experience we have with the twitching is that he has it in his upper and lower extremities, and also the muscles in his back and chest. Now one of his legs sometimes has major tremors that do go away if he stands or I can just press down on his knee if he is sitting, and that will stop it. But the twitching has been helped quite a bit by the drugs they are giving him. I think the one for this symptom is the Baclofen. Has your dad received any treatment yet, or are they waiting for final diagnosis? Since on the drugs, my husband still has some twitching, but it is mostly when he lies down at night and is pretty tired after getting ready for bed. For the most part, it has gotten better, and it isn't all the time.

I hope they can help your dad!


dear daughter

i have experienced the twitching in legs, arms, lower and upper body. when it starts it just flys around my body and usually occurs after any movements such as trying to stand, bathing and pulling with arms. at times it is so intense it causes my clothes to flutter. the twitching was one of the first symptoms i experenced prior to being dianoised with als. i had had nerve conduction tests, emg, and several visits before i was dianoised. these were given at the university in st louis i also have cramps that feel much like a charlie horse and happen when i try any different movement such as moving my feet of legs in a different direction. i also have very nasty skelatal pain that lasts for hours. i have a very wonderful caregiver that understands als. my als came on very suddenly. I wish you the best.

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