Very Ominous symptoms

[jpa1]

About 5 weeks ago had a poking feeling in my back near the spine. It lasted for about a week and hasn't come back. Several days later I noticed my right foot began to get a cold.sensation and then my big toe became slightlly weaker. Then my right arm began to just get more tired. (Caveat, over the past summer noticed a few times same ARM would get tired when rubbing daughters head while getting her to bed). Would come and go.


Went to gp, thought pinched nerves and ordered x ray and neck ct. Both normal, but while he was there, both deep patellars were brisk. (3). Big toe has been getting progressively weaker and both calves are tight with a tingling sensation + twitching. Also, right pinky finger is stiff, and right ARM has much less stronger flex, + less strength. Also seeing twitching in forearm. Can tellthat my gait is affected, feels like I have to tell leg to pick up. Can tell I have no bounce in legs or right ARM and twitched are getting more frequent. No twitches yet in hands/feet, just bot calves feel so tight all the time

I go to the neurologisf on Tuesday for exam and EMG.

From internet, cant see any other possible disease that ALS.

 

[jpa1]

Any thoughts.would appreciated

 

[vickim]

I would wait for the neuro appt before you really start to worry. It could be any number of things wrong. Als doesn't come and go. I think you should go into your appt with a postive approach. The diag nostic process can take a while, it is a process of elimination. I wish you peace.

 

[notme]

HI

We've said this before, but it bears repeating. ALS simply does not cause sensory issues--and most of what you describe is sensory--feeling hot or cold, tingly, numbness, 'off' are all sensory.

The first thing noted my most with ALS is a loss of function--not a feeling of anything--an inability to do something or do something as they once could.

Good luck with your testing and try to put ALS out of your mind unless a doc says it needs to be there

 

[jpa1]

So I had a neurologist appointment - He said the EMG was mostly normal, a few small abnormalities in the C8 vertebrae area, but an MRI was negative. However, that is the shoulder/arm that I have been complaining about being weak for a while (and getting weaker). Now, I'm noticing more twitches and involuntary muscles spasms.


1) Can you do the EMG too early in the disease? I definitely to do not have "clinical weakness" yet in my limbs but there is definite weakness compared to what I normally have. They want to do another EMG in a month.

2) How do people with ALS sleep at night with the constant twitching? My calves feel like they are so tight and with constant little twitches that make it hard to sleep.

3) Can the spasms twitches be all over or typically in just one area. I notice them mainly in the calves but also get in fingers, shin, and upper arms. Both legs are starting to feel weaker espeically when standing, but no toe/feet twitches.

4)Did most who get diagnosed with ALS "know" deep down that they had it even before the official diagnois? I know I'm in the early stages, but I was a very strong 35 year old male, so some of my weakness is imperceptible. For me, I know that I have it from the right arm - used to be able to curl 35lb weights - tried the other day could barely do 20 lbs once.

 

[ottawa girl]

I am perplexed. Did the neuro indicate next steps in the investigative process besides another EMG? Typically this test identifies issues long before one is even aware of them, so I'm just wondering what 30 days will accomplish, but hey! I'm no doctor. Were you actually told that you are in early ALS stages, or is this your own conclusion? You may think you know, but you may be wrong! Weakness & twitching can be caused by many other things.

Twitches, as you know, are common and generally benign. While mine are due to ALS, I can tell you that they increase dramatically if I am over tired, stressed or cold. I do feel them more at rest (which is normal), but I'm used to them now; sleep is not interrupted by twitching, but rather by spasms & cramps. My twitching is localized mostly to my left side. Ditto for the spasms.

Did I know deep down? Yes. But only after all other options were explored. Please keep in mind, that I waited some 16 months after symptoms started, before even visiting my doctor.

I can no longer hold a blow dryer, turn a door handle, pick up small items, fold laundry properly and the most irritating is the daily battle with my underwear... The bra is winning! Don't think I could curl 4 ounces.

Please, try to relax about your situation. I know it is overwhelming, but all the worrying will not change the outcome, and may do you other harm, such as an ulcer, gut problems, insomnia etc. Meditation, hiking, volunteer work may be helpful to get your mind off this.