Curious about progression

[ohioprof]

I have to start by letting everyone know that your stories of courage and support are inspiring; I am humbled by all of you. I am not sure if I have ALS or not, but even if I don't, I will have you all in my thoughts and prayers. My ex-wife has a foundation that contributes money to charities of her choice. Fortunately, I still get along with her very well, and I will encourage her to donate a sizeable sum to ALS research. Keep staying strong.
Now for my question: does ALS typically spread from the (hands to the arms) / (feet to the legs) or vice versa? My weakness has started in my upper right arm (mainly biceps and shoulder) and seems to have moved toward my forearms. I still have quite a bit of dexterity in my fingers, though. My symptoms, however, have moved into my legs but my feet seem to be ok. It all started with weakness in my right arm, then moved onto my left arm (same weakness in my biceps and shoulder) about 10 days later. Then a day after that, it moved to my right leg and a day after that happened, moved to my left leg. Can ALS symptoms progress that quickly? I am still able to do all of the things I normally do, but I know my body very well, and I definitely have lost about 10 to 20% of my strenght. Do you guys think it is possible that I have ALS.

[ohioprof]

I have to start by letting everyone know that your stories of courage and support are inspiring; I am humbled by all of you. I am not sure if I have ALS or not, but even if I don't, I will have you all in my thoughts and prayers. My ex-wife has a foundation that contributes money to charities of her choice. Fortunately, I still get along with her very well, and I will encourage her to donate a sizeable sum to ALS research. Keep staying strong.
Now for my question: does ALS typically spread from the (hands to the arms) / (feet to the legs) or vice versa? My weakness has started in my upper right arm (mainly biceps and shoulder) and seems to have moved toward my forearms. I still have quite a bit of dexterity in my fingers, though. My symptoms, however, have moved into my legs but my feet seem to be ok. It all started with weakness in my right arm, then moved onto my left arm (same weakness in my biceps and shoulder) about 10 days later. Then a day after that, it moved to my right leg and a day after that happened, moved to my left leg. Can ALS symptoms progress that quickly? I am still able to do all of the things I normally do, but I know my body very well, and I definitely have lost about 10 to 20% of my strenght. Do you guys think it is possible that I have ALS.

[shopathonic]

There's really no way to offer any firm judgment based on your description. Your best bet for ruling ALS in or out is to make an appointment with a neurologist who specializes in neuromuscular diseases. Based on his/her examination and any subsequent testing, you will know for sure what you do or do not have.

Jeff

[ohioprof]

Thanks Jeff

I do have an appointment next Friday. So you don't know if ALS can progress that quickly . . . movement from one limb to the other three in less than 2 weeks? That is my main question.

[ohioprof]

One more thing

Fasciculations seem to be an important determinant of ALS. I've been looking at a lot of online sites and they make it almost sound like a slam dunk if someone has weakness and fasciculations . . . but then I also see that it takes such a long time to diagnose ALS. I have had fasciculations for as long as I can remember and they were more pronounced when I was tired or stressed or had fatigued muscles. Well considering my muscles have gotten weak, to me it doesn't seem improbable that my fasciculations would be a little more prevelant. Does any of that make sense?

[ohioprof]

One more thing

Fasciculations seem to be an important determinant of ALS. I've been looking at a lot of online sites and they make it almost sound like a slam dunk if someone has weakness and fasciculations . . . but then I also see that it takes such a long time to diagnose ALS. I have had fasciculations for as long as I can remember and they were more pronounced when I was tired or stressed or had fatigued muscles. Well considering my muscles have gotten weak, to me it doesn't seem improbable that my fasciculations would be a little more prevelant. Does any of that make sense?

[caroliney]

Ohioprof,

Do you take any statins by any chance?

Sorry that you have come to this forum under these circumstances, but you have come to the best forum in my opinion for advice. This group of people with ALS know it better than anyone and are my second family with the knowledge.

This Christmas was celebrated without my loving husband due to the loss of his battle with ALS of 24 months. It was hard without him this year, but with family, friends and God, we have somehow celebrated Christmas.

Our family has been focusing on the memories which we treasure as a family. ALS symptoms are different for everyone, like a snowflake, even our time with our loved ones. This disease is so complicated that we as a family just enjoyed each day as if it was our last.

In spite of this ALS disease, it has made myself a stronger person.

Keep fighting for a cure.

Hugs,
Caroliney:)

[ohioprof]

Thanks for the encouraging words

No, I don't take statins . . . never have. I've led a very healthy life and I hope that I get to continue doing that for years to come. Take care.

[citytom]

My problems started with dropfoot of the right let two years ago. Then I found I couldn't run or even walk fast. Up to two months ago I was able to use a cane, but had to give that up for a walker. I could see right now that it won't be long till I'm wheelchair bound.

However, my arms are not causing any problems, although some weakness. No breathing or eating problems.

[nspoc]

Hi Ohioprof -

It sounds like it is time for a thorough exam by a neurologist, preferably with ALS experience.

This could be consistent with ALS, but could be many other things, as well. The weakness that progresses, and moves to other limbs, is concerning.

But get going and get evaluated - if you have something else you can be treated. If it is ALS it is never too soon to get advice and assistance, and to make plans.

One word of caution - if you even THINK it could be ALS, or any other major illness, get your insurance in order right away. Life insurance will be impossible once you begin the road to diagnosis. Health insurance is important, as well - but if it IS AlS, you will be eligible for Medicare as soon as you are on disability. That is another whole story.

As far as diagnosis goes - that is variable. I have seem it diagnosed in 3 months, and I have seen it take years - I believe that is due to the variability of the way ALS presents.

I hope you do not have this disease - but it is time to find out what you do have.

Take care - and please stay in touch - Beth

[nspoc]

Hi again -

Just read your recent other posts. You have more knowledge than I could EVER have in this area, and plenty of experience in evaluating what you read. Anything I could say is woefully inadequate.

That being said -the one thing that jumps out about your symptoms is the time frame - maybe others could weigh in on this - but I have never heard of progression to another limb in one day. One could guess that it was already there subtly and you just noticed it. But if it went from perfectly normal to symptomatic in one day - that is odd.

I have read that you need a loss of nearly 50% of the motor neurons to feel the impact (I suppose due to compensatory mechanisms) - not sure of that. But anyway - a progression in a day (or even 10 days) sounds very unlike ALS. Don't want to give false hope - but that is so huge.

The fastest progressor I was aware of was unable to function in six months, especially breathing. The fact that your motor progression to other limbs is so fast, yet you retain at least 80% of your strength - seems VERY different from anything I know about - could easily be something else.

Again - your knowledge, and ability to research this area, far exceeds mine.

But it goes without saying - time for a professional look at the problem.

Good luck! Beth

[Tall John]

I know you're freaked out. At this point, there are still several things it could be. ALS CAN move very quickly, but you say you've had fascics for a while ? What area ? Constant ?

[vmd]

Weakness can be very tricky to measure and I would wait until the neuro does the strength tests and determine whether there is objective weakness. Sometimes, we have the sensation of weakness, but not actual weakness as measured by some objective test. I have never heard of weakness progressing that quickly. Perhaps, some of the PALS will be able to describe their weakness progression.

[ohioprof]

I've had fasciculations in various parts of my body and they typically occured when I was fatigued, tired or stressed-out . . . that is . . . when most people get them. They happened in various parts of my body, but went away with rest. They seem to have gotten better since I felt them about a week ago . . . and coincidently, I was very stressed and sleep-deprived at the time. My weakness is still in all of my limbs, but it will wax and wane and sometimes on limb is more weak than the other, depending on the day or the time of day itself. I'm continuing to research my symptoms and doing some self-diagnosing. Fortunately, I was a respiratory neurophysiologist for nearly 10 years and now teach physiology in a medical school, so I have the tools to inform myself. I'm no expert in ALS, though . . . but I hope to be very soon. I came to this forum, because it appears to be the best on the internet and you all seem to be very knowledgeable. As soon as my scope of knowledge widens, I will be sure to share it with all of you.

[Tall John]

Had fascics for 6 months BEFORE noticing ANY weakness, only upper arms and chest, usually when tired or stressed.

I must concur with others here : Your symptoms don't sound like ALS.

When you look at your hands, do you see any atrophy (between thumb and pointing finger) ? If you point your palms down, can you still move your fingers rapidly up and down ?

[ohioprof]

Hello again Tall John. I don't notice any atrophy at all and I still have very good dexterity in my fingers. I know that if someone told me my symptoms and the circumstances behind them, I would tell them that they probably slipped a cervical disk and it's pressing on their spinal cord. However, I am the type to worry and worry about the worst . . . a flaw of mine. I do appreciate your words and your willingness to respond to me. You and the rest of the people on here are absolutely amazing.

[ohioprof]

Thank you for taking so much time to reply to me and attempting to relieve my fears. You and everyone else on here are so incredibly amazing. I have a tendency to always fear the worst and having motor symptoms in the absence of sensory symptoms caused me to immediately think of ALS. I know that it all started in the gym and I have had neck problems in the past, so logically it would point to a spinal cord compression problem. Unfortunately, logic isn't always what engulfs our thoughts . . . it's emotion . . . and emotions are what I'm feeling at the moment.
I have a question for you: you said that the fastest you heard of anyone becoming debilitated is 6 months. How fast was that progression? Was that bulbar or limb onset? If it was limb onset: did it start in one limb and debiliate that limb before moving-on to the other limbs? Your continued replies would be very welcome. Take care.

[Al]

Ohioprof. If you could do me a favor and only post things in 1 forum it would help immensely. You had 7 replies in 1 area and 8 in the other. Some duplication is bound to occur and when people are using assistive devices to navigate through here you make it more difficult for them by duplicate posting. Thanks.
AL.

[ohioprof]

I apologize for that . . . I was just trying to get my message out to as many people as possible . . . but I promise not to do it any more.

[Al]

No problem. Just makes things easier for some of us. Thanks.
AL.

[Tall John]

The landscape is littered with fast progressers (the Packard who created his namesake clinic at Johns Hopkins went very quickly - check the web). The doctor who treats me at UCSF has seen 2 months, from first symptom.

Al, hope I'm not breaking rules by referring to other posters.

The case that made me sit up and pay attention was right here by a guy in his early 30's, went by chadbowman. He posted a good bit, and it was alarming how quickly things happened. I'm pretty sure it was limb-onset. Not sure if we can still pull up his posts.

When I'm down, I think of him, and Blaseman, and a guy who lived close to here (Ramaticci), who was gone in a year and a half. They were all younger and in good shape (like me) at onset. Then I count my blessings.

[Al]

Chad was about 6 months if I recall correctly. We have seen quite a few members gone in less than a year lately. Not all with bulbar and many different ages. I wish someone could figure it out. It makes a scary disease even scarier.
AL.

[Tall John]

Don't take the "we'll see you in 3 months" stuff. Complain, say you're losing sleep and weight, say it is an emergency. If it turns out you DO have ALS, you'll be happy you wasted as little time as possible.

[ohioprof]

I went to the neurologist on Friday and had NCV and EMG tests done on my most affected arm. They both came back normal. However, my symptoms just started about a month ago. Would that be long enough to show abnormalities on an EMG? I usually have fasics, but of course, when I was at the appointment, they were absent. Even though I didn't notice them, would they still show-up on the EMG?
My reflexes were all good, except for one in my arm . . . the arm that started with the symptoms and that I've had the most problems with.
Weakness in my limbs is still there . . . again, it's not clinical weakness, but none-the-less, weakness. I tested it in the gym: I've defnitely lost strength.
Does anyone have an opinion for me?

[Tall John]

Even when I was still strong, this was not good.

I am puzzled how yours was normal ? If you have a disc issue, one of the two tests should have caught it.

Also, the arms could easily be explained by the neck pain etc (disc). That doesn't cover the legs. Have you looked into MS ?

[ohioprof]

Hello again Tall John

Actually, with myelopathy (especially a mild case, which is what I hope I have), both NCV and EMG will be normal. There is no damage to the nerves themselves, so the conduction velocity will be fine and there is no denervation / reinnervation, so EMG will be normal too. As far as my leg problems: compression of the spinal cord at the cervical level will cause muscle weakness in the legs (it won't cause pain, but can certainly cause weakness). The reason is because the nerves from the cervical region run down to the lumbar region and then innervate the legs. Sometimes compression of the cervical spinal cord will only present with leg weakness symptoms.
I'm getting an MRI tomorrow, so I'm hoping to see a cervical disc herniation. It's also going to be with and without contrast, so that should show whether or not I have any lesions, which would indicate MS.
Thanks again for writing. I really appreciate your insight. I'll keep you posted.

I just realized that this has been all about me. Do you a definitive DX of ALS? Is there any hope that you don't have it? I'm not sure how to go to your threads, so I don't know too much about you. You really seem like you have it together, though. Hang in there, John and take care.

Nick

[Tall John]

Click on blue Tall John - will give option to check other posts.

Yes, I have the real deal. Some confusion early on due to slow progression (could have been MMN - I had no upper symptoms till June last year)

With a clean NCV I'm not sure how it could be ALS ?

[Mark]

I tried sending this as a private message not because it needs to be private but because I cannot find the thread in which I responded to one of your original postings which included some information about cervical myelopathy. I have had progressive weakness and atrophy of my shoulders, arms, and hands over the past three years. I have fasiculations in my legs but no perceptible weakness. MRIs of my neck showed severe degenerative changes. The original radiologist asked whether I had ever been in the rodeo! I have seen four neuromuscular specialists the last diagnosing bi brachial amyotrophy -- a variant of PMA limited to the upper body. I have weakness in the neck as well. I also saw a neurosurgeon in July, 2006. None of these consultants thought the problem was in my neck though I continue to wonder. I do not have any significant pain associated with this condition. Pain is mostly in my neck depending on what I'm doing but except for occasional abdominal muscle spasm pain is not really part of this syndrome. Any thoughts or recommendations you might have about this I would very much appreciate. My local neurologist is open to new ideas and is very supportive. If this were cervical myelopathy I would offer some hope of treatment although it could be too late in the game for a full recovery. Good luck to you with your condition. Take care.

Mark

[brian32]

I've had fasciculations in various parts of my body and they typically occured when I was fatigued, tired or stressed-out . . . that is . . . when most people get them. They happened in various parts of my body, but went away with rest. They seem to have gotten better since I felt them about a week ago . . . and coincidently, I was very stressed and sleep-deprived at the time. My weakness is still in all of my limbs, but it will wax and wane and sometimes on limb is more weak than the other, depending on the day or the time of day itself. I'm continuing to research my symptoms and doing some self-diagnosing. Fortunately, I was a respiratory neurophysiologist for nearly 10 years and now teach physiology in a medical school, so I have the tools to inform myself. I'm no expert in ALS, though . . . but I hope to be very soon. I came to this forum, because it appears to be the best on the internet and you all seem to be very knowledgeable. As soon as my scope of knowledge widens, I will be sure to share it with all of you.

Mark,
I have just been diagnosed with a rare autoimmune disorder called CIDP. This could possibly be what you have. How long has this been going on (onset)? What is your age? My symptoms started very similar. Let me know if you'd like more information.

Brian

[brian32]

Sorry. I meant Nick. I got my names mixed up. Nick, if you'd like more info on my experience with CIDP, let me know,

Brian

[androgel1970]

Hello Brian
Yes, I would very much like more information on your story. In the meantime, I'll try to educate myself about CIDP. Thanks, Brian.

[cinie24]

Hi, I am new to this site, I've been doing a lot of reading and I have a few questions. My good friend was just told that he has bulbar ALS. I have heard several things as far as the speed of this disease. Now, I have a video made in June of 07 and he was fine, talking fine, then on the same tape we went to the lake on Sept 1 of 2007 and you could not understand him - he was slurring real bad and he had just started choking on things like eggs and such. He can still talk in the mornings and I can understand him but as the day goes on it gets hard to understand him. Now, he was told a few days before Christmas that this is what he had, he has done the whole Lyme test and one come out positive and one did not. Both were western blot test. We went riding dune buggies over the weekend,which is 4 wheeling, yes he was the driver, and I did notice that he was having problems with his hands and arms now. Is this fast or what? Please help me understand because I hear that it must be something else because it is moving to fast, he is not have trouble with his legs or anything else. I am hoping and praying but all I can do is sit and watch and it is driving me crazy! I guess I am really wondering if he is going down hill to fast or what?

[CindyM]

Hello Cinie- so sorry to hear about your friend. Often folks look for direct answers but the disease affects everybody differently so it is hard to be specific. The more you learn, though, the more you will be able to help your friend. You will find a lot of information by using the search feature at the top of this screen. And if your friend is ntor egistered with his local MD chapter you might want to recommend that. If his ALS clinic offers support groups, that is a good place to begin as well.

This disease is tough on all concerned. I am sorry you had to seek us out but we will help all we can! Cindy

[Tall John]

Sorry to hear about your friend. ALS CAN move very rapidly, see some of my other posts - click on blue Tall John

[patricia1]

Hi, I am new to this site, I've been doing a lot of reading and I have a few questions. My good friend was just told that he has bulbar ALS. I have heard several things as far as the speed of this disease. Now, I have a video made in June of 07 and he was fine, talking fine, then on the same tape we went to the lake on Sept 1 of 2007 and you could not understand him - he was slurring real bad and he had just started choking on things like eggs and such. He can still talk in the mornings and I can understand him but as the day goes on it gets hard to understand him. Now, he was told a few days before Christmas that this is what he had, he has done the whole Lyme test and one come out positive and one did not. Both were western blot test. We went riding dune buggies over the weekend,which is 4 wheeling, yes he was the driver, and I did notice that he was having problems with his hands and arms now. Is this fast or what? Please help me understand because I hear that it must be something else because it is moving to fast, he is not have trouble with his legs or anything else. I am hoping and praying but all I can do is sit and watch and it is driving me crazy! I guess I am really wondering if he is going down hill to fast or what?

Has anyone mentioned myastis Gravis to him. Those symptoms are better in the am and after resting Pat