Curious about progression

[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]

Duplicate Posting In 2 Or More Forums

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]

Sorry I took so long

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]

Rattle the doctors' cages

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]

ncv

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]

To Tall John

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]

Easy

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]

Cervical myelopathy

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