Old 03-11-2018, 02:44 PM #1 (permalink)
Pbjbtb's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Pbjbtb Pbjbtb is offline
New Member (Say Hi)
Pbjbtb's Avatar
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Default Would love some opinions

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 MRIís (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??
Pbjbtb is offline  
Old 03-11-2018, 04:25 PM #2 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Would love some opinions

What is your doctor saying he/she thinks it is?
affected is online now  
Old 03-11-2018, 05:33 PM #3 (permalink)
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,637
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,637
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Would love some opinions

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.
KimT is offline  
Old 03-12-2018, 07:06 AM #4 (permalink)
Pbjbtb's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Pbjbtb Pbjbtb is offline
New Member (Say Hi)
Pbjbtb's Avatar
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Default Re: Would love some opinions

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.
Pbjbtb is offline  
Old 03-12-2018, 10:08 AM #5 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Talent
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 760
KarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud of
KarenNWendyn KarenNWendyn is online now
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Talent
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 760
KarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud ofKarenNWendyn has much to be proud of
Default Re: Would love some opinions

The tingling you experienced in that leg really goes against ALS. I know itís hard to wait when you donít 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 ďno ALSĒ, or they may still leave you in limbo with yet another appointment 6 months later.
KarenNWendyn is online now  
Old 03-12-2018, 03:06 PM #6 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Would love some opinions

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.
affected is online now  
Old 03-12-2018, 06:22 PM #7 (permalink)
Pbjbtb's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Pbjbtb Pbjbtb is offline
New Member (Say Hi)
Pbjbtb's Avatar
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Default Re: Would love some opinions

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
Pbjbtb is offline  
Old 03-13-2018, 11:25 AM #8 (permalink)
Pbjbtb's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Pbjbtb Pbjbtb is offline
New Member (Say Hi)
Pbjbtb's Avatar
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Default Re: Would love some opinions

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
Pbjbtb is offline  
Old 03-13-2018, 11:58 AM #9 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,135
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,135
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Would love some opinions

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
Nikki J is offline  
Old 03-13-2018, 08:53 PM #10 (permalink)
Pbjbtb's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Pbjbtb Pbjbtb is offline
New Member (Say Hi)
Pbjbtb's Avatar
Join Date: 2018
City: Cashiers
State: NC
Country: Usa
Interest: I am interested in learning about ALS/MND.
Posts: 5
Pbjbtb is on a distinguished road
Default Re: Would love some opinions

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.
Pbjbtb is offline  
Old 03-13-2018, 09:54 PM #11 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,647
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,647
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Would love some opinions

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
lgelb is offline  
Old 03-14-2018, 02:34 AM #12 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Would love some opinions

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.
affected is online now  
Closed Thread

Tags
als, anxiety, brain, cramps, foot, love, muscle, twitching


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
looking for your opinions, please rodrigez Do I Have ALS? Is This ALS? 4 02-28-2016 02:05 PM
Opinions please Bowsersmom Do I Have ALS? Is This ALS? 4 08-21-2014 09:34 PM
Act of Love azgirl People With ALS - "PALS" 22 06-24-2014 03:07 PM
Love? Or something more? pepsiman Stories of Hope 62 04-02-2010 08:22 AM
Finally Saw The Neuro, Would Love Opinions... glenn gavanaugh Do I Have ALS? Is This ALS? 12 03-23-2009 10:52 PM


All times are GMT -5. The time now is 07:16 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016