Continuing to Slide

[Guest]

It's been about three weeks since I posted. Thanks for everyone's support to this point.

My symptoms of weakness, heaviness, atrophy, loss of muscle tone continue.

Since my last post, my arms and hands seem more effected. Stiffness in a few fingers, wrist, and the muscle between the thumb and forefinger. Arms and fingers feel a bit dis-coordinated but functional.

The feeling that started all of this in my right foot is now appearing my left foot. It's kinda an aching and light cramp feeling in the ball of the foot and strectched feeling in the big toe. The soft tissue around both ankles is thinning. The right side's further along than the left. "Scoops" are progressing in ankles. Feet are stiff. Muscle tone decreased....especially calves.

Still functioning normally....at least in appearence. Legs, arms, shoulders are so heavy!

Left shoulder aches bad at night when I sleep on it...then aches through the day.

No "clinical" weakness but fatigue is here and stamina is gone!

How long did it take for "clinical" weakness to be present in PALS from the time of onset of symptoms? Right away? Months? Years?

Still hoping and praying this will somehow make a turn for the better.

Neuros seem all but done with ideas and testing.

Thanks for your advice, support and letting me vent.

Curtrill

 

[Guest]

HI

I went and read a few of your other posts. With multiple clear EMGs and normal neuro exams--it's unlikely you have ALS in any form or PLS. UMN dominant ALS would show in a clinical exam and PLS would show abnormal results in clinical exam as well.

I am not diagnosed--but I also have NOT had anything even close to resembling a normal clinical exam in the year this nightmare started for me. I have clinically observed LMN and UMN signs in multiple body regions from my face to my feet. I still might not have ALS even with all the things going wrong.

I hope you can find some answers--but I don't think ALS or other MND will be it, thankfully.

 

[Guest]

Notme,

Thanks, once again, for your quick support. EMG's are great when they're clean....no doubt. I am careful not to offend anyone. I know many here are in far worse shape than me.

When you continue to feel worse it's hard not to wonder about what the next one might look like....if I don't improve. Was something missed....were they done correctly....all the things that go through our minds after months of knowing something is definetly wrong.

What did your EMG's show?

 

[Guest]

Ya now--As I'm sure you've been told--things how up on EMG long before they show up with signs you can see. even if ONE EMG is done wrong (which is doubtful) it's very unlikely that 3 would be.

I'm not saying something can't be wrong--but I think you're looking in the wrong area. THere are other things that cause weakness. Pain isn't generally seen in ALS either--

Have you had neck issues? MRI of your neck to see if there are nerve problems? Trapped nerves in the elbows? Spinal issues? Lots of things to check.

 

[Guest]

The thing that sends almost all ALS sufferes to the dr initially is profound weakness some where in there body, that has stopped them performing a task that they previously had no trouble doing. A lady I knew just could not hold her pen. Thats all she had know idea that 2 years later she would lose her life to this illness.

there are 100s of other neurological disorders you could be fixating on. I am not sure why you have chosen ALS, rather than something else. ALS is relatively easily diagnosed by an emg then a short period of wait and see. The progression tells the story, alongside the EMG resulkts and clear UMN and LMN signs. You have nothing at all to point to ALS.

 

[Guest]

curtrill,

What are you no longer able to do that you have always been able to do, for as long as you can remember? Can you snap your fingers? Can you pick up a dime from the kitchen table? Can you tie your shoes? Can you button your shirt?

Can you walk up the stairs without catching your toe on the front edge of the step? Can you move your foot back and forth between the pedals (gas, brake, and clutch) without having to pick your knee up to do it? Does your foot flap down when you walk like you were wearing a scuba flipper on it? Are your shoes wearing out on the very tips of the toes because they're always dragging on something?

Do your business colleagues think that you sneak out for an adult beverage or three during lunch? Can you drink through a straw? Can you lick an ice cream cone? Can you whistle? Are you biting your tongue while you're chewing your food?

Those are kinds of questions you'll give strange answers to when you have ALS. The weird answers will start in one part of your body and keep getting worse and never get better. And by "one part of your body", I mean one hand, not both arms; one foot, not both legs.

When a doctor says "clinical weakness", he means "can't do," not "have difficulty doing," or "get tired doing", or "do it for a shorter time than I used to do it." That's the standard for determining clinical weakness -- 'can't do".

And the "can't do" is a permanent "can't do" in ALS. If you can do it after a rest, it's not a permanent "can't do". If you do can do it sometimes, but not always, it's not a permanent "can't do". If you can start doing it, but you have to stop doing it before you want to, it's not a permanent "can't do".

You seem to be convinced that you've got ALS -- why else would you stay here all this time and be so regular about your posts? If you have ALS, then you have some permanent "can't do's". Tell us about them.

 

[Guest]

Notme,

I have had complete spinal exam....MRI three CTs all with contrast. Nothing to explain symptoms. Thanks for your response and all ideas. The pain I have is a tightning stiffness in the muscles. Perhaps my joint pain is due to weakening supportive muscles?

 

[Guest]

Alyoop,

The main things that sent me to the doctor was going from easily being able to hike 15-20 miles a day to a constant stiffness, aching when walking 2 steps. This occured in a matter of a few weeks! 8-9 months all day every day and only spreading.

Any ideas on what this might be out of the 100's of possibilities would be appreciated.

I know no one is a doctor here but I also believe the wealth of knowledge here can surpass that of some neuros.....sorry docs!

Thanks for your help!

 

[Guest]

What signs have the doctors found? UMN ? LMN?
It took 3 years from my symptoms of tripping, lack of stamina, cramps, before my clinical examination started seeing the UMN signs, including clonus in my legs. The lag was surprising, but could have come down to poor clinical examination techniques.

 

[Guest]

Notme,

I have had complete spinal exam....MRI three CTs all with contrast. Nothing to explain symptoms. Thanks for your response and all ideas. The pain I have is a tightning stiffness in the muscles. Perhaps my joint pain is due to weakening supportive muscles?

This may seem overly simplistic--but it's possible your joints are the problem--from years of bike riding.

While athletes are generally in very good cardiovascular health--they are much more prone to joint and muscle injury due to the stresses put on their joints during their chosen sport.

And trfogey makes a great point. My "can't" issues are: Snapping my fingers (no matter how hard I try--which I just realized after reading his post) or pushing buttons (ain't happening--and is what sent me to the doctor when this crap all started)

But, I also must add that at times doctors aren't always real with it. My loss of function was ignored after a stroke was ruled out until the atrophy showed up. Even my pain doc at the time couldn't get my doc to listen that something was up. With the insurance I had then--I couldn't see a neuro without a referral.

So, while I agree we must be our own advocates--we must also not become so obsessed that we ignore testing that is negative. Clear EMG means no ALS. That's all it means. It doesn't mean there can't still be a problem. There can be--all kinds of them. Many, many fixable.

I screwed up due to major frustration from years of fighting to find answers for my other health issues--and didn't go see a doctor for anything but med refills until there was enough atrophy that there was simply no way they could "ignore" me any longer.

My main point by telling you all this is that I have no idea what is wrong with me. A neurosurgeon and an ALS specialist suspect ALS--but I have no diagnosis.

My other point is don't assume everything is connected. It isn't necessarily. Your normal neuro exam and clear EMG mean you don't have ALS. The people here, for the most part, do.

There is myesthenia gravis, multiple sclerosis, periodic paralysis, myopathies, neuropathies, fibromyalgia, bad joints--all kinds of things--I can't remember what all you've already been tested for--but I'd bet my last dollar ALS isn't even on the table as a differential diagnosis with your symptoms.

Edited to add that I had clinical weakness (Diagnosed by the ALS specialist) on exam that I didn't even KNOW I HAD.

 

[Guest]

Have you been checked for RA (Rheumetoid Arthritis)? Took my brother more than 2 years to get diagnosed with it... so many things it could be, sounds like from your EMG that you can rule the worst one out.

Good luck!

 

[Guest]

I have been tested for RA, MS, MG, GB, Myopathies and Neuropathies.

Only UMN sign has been only slightly brisk reflexes (2+/3). No balance issues, clonus, Babinski, Hoffman's.

LMN - Fasciculations, asymmetry, loss of muscle tone/volume.....these are most evident in the calves. The right one, which is difinetly smaller and a bit weaker, has been needled three times and the left one once....clean! Asymmetry is evident in right foot, ankle and calve. (Dominant side)

It was pointed out to me at my first exam in March at the ALS Clinic that my right pectoral and bicep have slight decreased muscle mass...I hadn't even noticed. I also have a slight reduction of tissue on the right tip of my tongue.

Isn't it odd that a person can have asymmetry from the foot to the tongue? Wouldn't that involve a lot of LMN area on the spine?

 

[Guest]

TRFogey,

Thanks for your reply. I have listed my current limitations and changes in another post in this thread.

I understand that many suddenly notice a "can't do".

Is this the way it always occurs?

Are there times when it progressively becomes more difficult eventually leading to a "can't do"?

Thanks for your patience and helping many understand.

Also, thank you for your encouragement that I do not have ALS.

P.S. Let me say to all that I had no idea what PALS and their families go through facing this monster! In my opinion, it is a tragedy that public awareness isn't higher.
How about a 750 billion dollar stimulus package for the support of patients and families and to find a cure! It's been long enough already!That's my soap box.

 

[Guest]

Your country is far too busy trying to send man to mars

 

[Guest]

Are there times when it progressively becomes more difficult eventually leading to a "can't do"?

It always starts off gradually, curtrill -- one motor neuron at a time. That's why the first places that the "can't do's" show up are the places that have the fewest motor neurons serving them, way out at the ends of the nerves that serve that particular area of the body -- the hands, the feet, the tongue.

When one motor neuron dies, the body tries to rewire things so that neighboring motor neurons can pick up the slack. That rewiring process for LMNs is detectable by an EMG long before the process is clinically detectable. With UMN problems, the early symptoms are more subtle, with coordination problems and slowly increasing hyperreflexia, spasticity, and muscle tone.

When the body starts running out of neighboring motor neurons, then the "can't do's" start happening. That's simply the nature of MNDs. And observations of tens of thousands of MND cases over the past three-quarters of a century have indicated that MND progression is pretty much linear -- "start fast, go fast, end fast" or "start slow, go slow, end slow". It's not fair, but it's reality, and all you need to do to prove that to yourself is to read through some of the threads in our caregiver support section or our ALS Discussion or PALS Discussion sections.

So, if you had symptoms pop up all over your body in a matter of days or weeks and suspect that ALS is causing them, then you would expect that the other steps in the process (paralysis, muscle wasting, extreme weakness, etc.) would happen quickly as well. If that doesn't happen, the reasonable and logical thing to do is question your basic assumption -- maybe your symptoms weren't caused by ALS -- rather than assume that you have an "atypical" presentation. That's why a diagnosis can take so long -- the doctors are letting the condition reveal itself. And it's the only tool that they have at that time, which is why you want an expert to make that call to wait.

Hope this helps.