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Pbjbtb

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Mar 11, 2018
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Learn about ALS
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NC
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Cashiers
Let me just start by saying my anxiety is through the roof with the thought that i may have ALS. Trying so hard to maintain my sanity until I get to the mayo in a couple weeks.
I have a heavy foot that appeared about 10 mos ago along with tingling in the same leg. I have had 4 MRI’s (brain, neck, spin and lumbar) that are all clear. Recently my whole body has started twitching. I have experienced muscle cramps and do feel some tightness at times. I also have hyper reflexes in both knees.
Thoughts??
 
What is your doctor saying he/she thinks it is?
 
Are you going to Mayo in Jacksonville? If so, they will do an EMG and see what is going on. Hyper reflexes and twitches are common in many the general population and can be caused by anxiety. Did you get complete blood work to rule out vitamin deficiencies and electrolyte imbalances, which could cause cramps?

Rest assured that Mayo will do whatever tests are necessary to figure out what is going on.

We can't tell you much more than you already know except you didn't mention weakness. I'm not sure what you meant by heavy foot. Does it drag? Can you walk on your heels and toes? Can you walk up a flight of stairs and back down?

Are you in good shape? Exercise? Get enough sleep?

Gather all your records and all your questions and take them with you.

Please let us know what the doctors at Mayo think.
 
Thanks so much for taking the time to reply. My neurologists told me to come back in 6-9 mos. This was about 3 months ago. Hence why I made the appointment at mayo. I’m going to their nuero dept in MN. My foot does not drag per say. It just feel heavy and slightly effects my gait. I can walk up and down stairs. It’s just not normal. Don’t know how else to describe it. I do feel like I’m weaker in my leg muscles. My balance definitely feels impaired. I have had blood work to rule out defiencies. I’m 50 years old and in good shape. I exercise daily. This is all absolutely unnerving.
 
The tingling you experienced in that leg really goes against ALS. I know it’s hard to wait when you don’t have clear answers. The good news is that if the neurologist you saw was more concerned, they would have scheduled follow up sooner rather than later. If your symptoms seem to be getting worse in a hurry, you could always try to get that follow up appointment pushed up sooner.

ALS would be very unlikely. The first neurologist probably felt there were not enough consistent signs and symptoms to make that diagnosis. ALS evolves over time. Sometimes the doctors need to see at least a couple points on the curve to get a sense of the trajectory, and that helps them rule in or out the diagnosis. If the follow up appointment is too soon, they may tell you “no ALS”, or they may still leave you in limbo with yet another appointment 6 months later.
 
Thanks for a better description - that's not how ALS foot drop is described. You will read us say here over and over and over - nothing feels any different, it simply won't work.

I hope they get things sorted for you quickly, it's awful not knowing what is wrong, but it just doesn't ring even close to ALS which is wonderful.
 
Thank you so much for taking the time to reply with your thoughts. I will follow up with my findings after my testing at mayo. God bless each of you
 
Can someone please explain the "stickys". I can't seem to find them. I want to know more about all the early signs of als and I can't seem to find information just from the moderators. Thanks
 
The relevant sticky is at the top of this subforum and says important post read before posting. We do not give details of first symptoms as that tends to make anxious people develop those symptoms

However the general rule is fsilure not feeling as you will see in the sticky
 
I feel like I need some clarification. Took me forever to figure out the stickies and yes, I have read them all. Also took me a minute to find my original post and thread as I am new to all this.
Weakness: this seems to be confusing to me in the world of ALS.

Here is what I stated before. about 10 mos ago I experienced a "heavy foot" out of nowhere. Not a drop foot that didn't work all together but heavy in the sense that It didn't function as normal. i.e. I can't tap my foot as rapidly as I can the other foot. I walk with a slight differentiated gait. It's just that it's not normal. From what I have read on the stickies, it either works or doesn't. I have read a ton of post and thread. I see where many people experience weakness. So, do you experience weakness before you have the "fail"?

Also, I would like to know more about the hyper reflexes as this is a symptom that originated in the past 3-4 weeks. I originally stated that I had symmetrical hyper reflexes. I think it would be more accurate to state that I have one very brisk knee reflex and one that is a little more hyper than normal. The brisk knee is on the same side as the heavy foot.

As also stated earlier, I experienced muscle cramping when I had the onset of heavy foot. I still can experience these at times. I feel tightness in my leg muscles form time to time. I had involuntary stretching for a short time that could produce muscle cramps in my calf.

I also have had all over body twitching that came into play a couple weeks ago. There is so much about this topic I'm not sure the significance??

In the past couple of days, I have felt weakness in my hands. I have not dropped anything but almost did a couple of times. The coffee cup and a pair of glasses. Again, is there weakness before the "fail".

The cold weather definitely makes my walking seem more challenging.

I know I need an EMG to define muscle weakness (hopefully in a couple weeks at mayo). I don't think I have atrophied muscles yet but I do feel weaker on the whole right side of my body.

so.. I would like to have some clarity on "weakness" that may or may not present itself before the fail.

I would also like to know your opinion on how significant my hyper reflex scenario is with the foot and now hand issue coupled together.

I would also just like to say that I am soooo thankful to have this forum. I'm so sorry that so many of you are dealing with this diagnosis. If this is my path or not, you have a new supporter.
 
If you are asking, do all muscles go only from 60 to 0, the answer is no. But what lies between in ALS is always clinical, objective, verifiable weakness that is much the same minute to minute. And yes, that entails failure to do something that could be done before.

If you are asking if the pattern you report ("heavy foot"/tingling, other nonspecific cramping, hyperreflexia (clinical or your perception?), whole-body twitching, perceived bilateral hand weakness, perceived sporadic loss of balance) over a ten-month period, overall strongly calls ALS to mind, the answer is no.

You will know more after the EMG, but I don't think there's much more we can say to be helpful meanwhile. And, of course, some of the symptoms you mention tend to be created or magnified by the overstressed mind, so it's difficult for us to parse from afar what's "real" and not.

Best,
Laurie
 
Please let us know the results of a neurological examination and EMG but until then posting over again is unhelpful to you, and taking up the time of people who are fatigued and may be using their eyes to operate their computer.

I hope you find some answers soon, but as has been said - we can't do anything further on an internet forum. Live every moment of every day in the meantime as all we have is today.
 
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