Almost sure...what do you think?

[KennethC]

Hello all, and thank you for the help:

I've got a neurologist appt this week, and brain and thorassic MRIs scheduled. My symptoms have me praying for a tumor or MS diagnosis but I don't think that's coming.

My symptoms started 8 weeks ago with hand clumsiness, I just woke up one morning and both hands didn't work quite right. Had a cervical MRI but the neurosurgeon said 'get to a neurologist immediately' after hearing about my walking problems.

About three weeks ago my feet started feeling funny, sort of clumsy and uncoordinated. Soon after both my legs were heavy and felt fatigued while walking around. It's become progressively harder to walk, and my legs shake under load and going up and down stairs. My thighs and hamstring muscles seem very weak, and my calves get pumped up really quickly and also seem weak.

This past week my arm muscles are weakened too. I shake when lifting things and coordination in my hands is getting worse. Muscles in the legs calves shoulders will be sore randomly any day.

It's been a really fast progression and I'm declining so quick. Am in shock emotionally from the whole thing. Fully expecting ALS diagnosis, despite the little bit of tingling I felt along the way in hands and feet. Would love your insight on how this sounds to you.

All the best.

 

[KennethC]

Forgot to mention. Went to ER yesterday, as weakness had spread to my upper body so quick. In four hours they tested enough to show everything was at great levels, and I was super healthy. The PA even suggested my whole situation could just be anxiety...and she also rattled off a list of neuro problems, with ALS at the top of it. I had GBS at the top of the list of probable causes until that visit. With everything they tested at such 'good' levels, my wife and I are breaking into tears about the probable future now.

Thank you again for any ideas or insights.

 

[Nikki J]

Hi sorry you are going through this. Up until 8 weeks ago you were completely fine? And then noticed symptoms in both hands at the same time? Followed 5 weeks later by both legs? If this is all correct it sounds extremely unlike ALS onset - even fast progressing people notice a problem in one place first - one extremity or if bulbar onset in that area. Then limb onset will spread to either the other side at the same level or the other extremity on the same side. Both arms at the same exact time seems like something else and the spread to all extremities in 5 weeks is really really unusual

There are a lot of conditions with neurological presentations and a lot of tests that need to be done. Please try not to focus on ALS unless you are told it is likely by your neurologist.

How old are you? Some things are more likely in certain age groups

Good luck with your appointments

 

[lgelb]

Did the ER test your strength and reflexes? What was the result?

 

[KennethC]

Nikki you are so kind to respond. I'm 45.

Thank you for sending some hope our way. It does seem really rapid but I have nothing to compare it to, just symptom lists that match up with what I'm experiencing. Yes I was walking fine three weeks ago, and now with problems like shakiness/lack of strength and soreness/restlessness in both legs.

I will update with more info when I have it. This is a big week to learn more for better or worse.

 

[KennethC]

Igelb,

They did and said all was great. The strength tests are so 'low force' that they don't test at all how strong the muscle really is.

The PA at the end that the results 'looked like those from a healthy 25 year old.' This is not to brag! This is in contrast to how weak I am (how much strength I truly have) and how desperate and scared my wife and I were while sitting in there...

Thank you so much for asking.

 

[lgelb]

Kenneth, the hallmark of ALS is clinical weakness that is evident on an exam. Since you don't have that, ALS slides far off the table. Shaking legs can be a lot of things and soreness doesn't fit either. You mention restlessness in the legs so I'm wondering if restless leg syndrome (RLS) was ruled out. It can occur during the day, contrary to popular belief, and it can also manifest in the arms. A trial of magnesium lotion and doubling up on your dietary iron (common correlate of RLS) couldn't hurt. The neuro can screen you.

Follow through the diagnostic process so you can feel better, but you're in the wrong place here -- a very good thing.

Best,
Laurie

 

[Nikki J]

I do not experience the degree of difficulty/ level of symptoms you are reporting but my clinical weakness is completely detectable to my doctor on those "low force" strength tests and it is equally obvious to me as she performs them that I am failing what feels as if it should be easy

 

[KennethC]

Nikki, so sorry if I offended about the tests. Clearly I didn't understand their purpose.

The work you all are doing here is a godsend to so many people. Thank you for all you do to help.

 

[KennethC]

Igelb, my legs are only shaky when there is weight on them (like on stairs etc.), but your insights are much appreciated. I may post something to close this out with definitive info, in case that could be useful, but otherwise I will leave you all to your important work.

 

[Atsugi]

Kenneth, I'm not seeing ALS in you from your description. First, bilateral hands? And now, within a few weeks, all four limbs? That doesn't make any sense from an ALS standpoint. And the speed with which this attacked you just isn't ALS-like at all.

While your ER doc listed ALS as a possibility, I would take that with a grain of salt. ER docs are wonderfully trained and experienced at stabilizing a body in crisis, but they do not specialize in diagnosing rare illnesses. In fact, during the year that my wife had ALS, I discovered that few doctors and no nurses understood ALS. They all put on an air of confidence and knowledge, but I found that I had to give a "safety briefing" to medics whenever they interacted with my wife, just to ensure they didn't do something stupid to her.

Personally, I think you're looking in the wrong place for the answer. I doubt seriously that you have any ALS going on.

 

[KennethC]

Thank you, Mike, for taking the time to post this. And my sincere condolences for your loss.

 

[Nikki J]

No offense was taken Kenneth. Hope you feel better soon

 

[KimT]

Kenneth,
I don't see ALS in what you are reporting. Work with your doctor and you'll find out what's going on.
Kim

 

[KennethC]

Thank you for saying so, Kim.

In retrospect, I probably shouldn't have mentioned the hands of arms issues, since these could be related to some cervical disc problems.

Arms problems aside, I am concerned because I have had loss of strength in both legs for three weeks, and last week twitches I can feel started in my feet, calves, hamstrings and thighs. Basically all the time. I can't help but think that with these large muscles, they are dying and still work somewhat until too many fibers have died. Which is why it's harder to walk and the remaining muscles stay tight and get sore. This post here seems to suggest that if your muscles are getting weaker and they start twitching, they're dying: https://www.alsforums.com/forum/do-i-have-als-als/19094-bfs-als-must-read-if-you-twitch.html

Do you have any thoughts about if having these twitches happening in the same spots as I have felt weak are tell-tale signs of ALS? I'm going to push for an EMG at the neurologist, because I can't help but think these twitches with my perceived weakness are ominous.

Thank you again for your insight.