Do you think I may have ALS? thank you!

Status
Not open for further replies.

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
sorry to ask again,
what is flounoscopy particularly for?( is it must do test?)
thanks for your time❤️
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,695
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Amy - I will very respectfully suggest you go back to your doctor and ask these things.
This place is for checking about concerns for ALS which you are showing no signs of. We ask that once we have assured you that your symptoms don't match ALS, that you move away so we can focus on supporting our members who do have ALS.

You are asking terminally ill people, some who are using their eyes to work this website, and breathing with machines, to help you figure out things your doctor should do with you. Your doctor should tell you what tests they wish to do, why, and then what the results mean. If that is not happening, you need to push there for more answers, or change doctors.

After more than 30 messages here, I do believe we have helped you to our limit.
I am sure they will track down just what is going on with you, but working with your doctors, instead of searching for answers online is truly the best way for you to proceed. I wish you the very best.
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
Amy - I will very respectfully suggest you go back to your doctor and ask these things.
This place is for checking about concerns for ALS which you are showing no signs of. We ask that once we have assured you that your symptoms don't match ALS, that you move away so we can focus on supporting our members who do have ALS.

You are asking terminally ill people, some who are using their eyes to work this website, and breathing with machines, to help you figure out things your doctor should do with you. Your doctor should tell you what tests they wish to do, why, and then what the results mean. If that is not happening, you need to push there for more answers, or change doctors.

After more than 30 messages here, I do believe we have helped you to our limit.
I am sure they will track down just what is going on with you, but working with your doctors, instead of searching for answers online is truly the best way for you to proceed. I wish you the very best.
thanks, i called Dr. and asked why i need the test and she said because of my MIP and MEP LOW numbers, the next test will show me a little more . that was her answer.
ty
Amy
p.s. i dont know anymore it is
low or it is normal.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,379
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
They are a little low but they are very nonspecific and sometimes it can be just you weren’t able to time the breaths perfectly ( which is hard to do)
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
thank you Nikki,
i am so worried (( especially with this cough. i ve had this in december but now is back.cant take out mucus, its in chest and comes till like glottis area and cant take it out .no matter how i try).. i told her about emg as well. she was concerned i have this cough without cold or flu and that it came back again out of nowhere+ bad emg and my shortness of breath.

she told me, if it turns out to be mnd it is important to check my breathing muscles.
she did not prescribe anything, said i have to know test results first cause some medications cause bronchospasms.


i hope you are right Nikki, ❤️
thank you all, i appreciate every answer and time of yours.
please dont get mad at me🙏
ty
Amy
 

Dee Dee 0617

Distinguished member
Joined
Nov 27, 2019
Messages
147
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
Hi Amy. First let me say how utterly sorry I am that you are going through this. Secondly the people here are the best. You can take everything Nikki or Karen tell you as gospel. Thirdly, it is very obvious you have something going on, but before you go to the letter z in the alphabet, breathe kiddo. Just allow yourself a minute without panic. We all started this in the same place. Something was wrong, we went to see our doctor. Then one day at a time, one test at time until they knew what it was and put together the best plan utilizing what's currently available. Make an appointment with your family physician. Breathe. Keep us posted, we like to hear .
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
Hi Amy. First let me say how utterly sorry I am that you are going through this. Secondly the people here are the best. You can take everything Nikki or Karen tell you as gospel. Thirdly, it is very obvious you have something going on, but before you go to the letter z in the alphabet, breathe kiddo. Just allow yourself a minute without panic. We all started this in the same place. Something was wrong, we went to see our doctor. Then one day at a time, one test at time until they knew what it was and put together the best plan utilizing what's currently available. Make an appointment with your family physician. Breathe. Keep us posted, we like to hear .
thank you ❤️ Dee Dee so much for support.
i am alone and confused with all this. its a big help to be able to share things with someone like you guys, who knows a lot. i know you think i am one more scared person, with silly symptoms ,but who knows ,may be not and one day ill end up to be a new member of your super brave family here.

everyone is unique in this world, ALS seems to be also unique in every individual, so... who knows. even it sounds not like it, still could be the case. but every answer of yours means a LOT. Thank you mln times🙏🙏🙏

whoever feels i am wasting your time , just ignore me..
Thanks
Amy
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,379
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Once you get your emg official report ( or have another one here) things will be much clearer to you and to us

please do seek out an internist. Even if you DO have an MND it is important to have one to handle things that are not directly MND related. If you have something else the internist will help you find it. A relative of mine ( an intelligent mature person who held a responsible but non medical job in a hospital) self referred to a specialist surgeon who OPERATED it turned out to be something else. An internist would have likely directed them appropriately and spared them that.
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
Once you get your emg official report ( or have another one here) things will be much clearer to you and to us

please do seek out an internist. Even if you DO have an MND it is important to have one to handle things that are not directly MND related. If you have something else the internist will help you find it. A relative of mine ( an intelligent mature person who held a responsible but non medical job in a hospital) self referred to a specialist surgeon who OPERATED it turned out to be something else. An internist would have likely directed them appropriately and spared them that.
thank you Nikki, i will do that for sure tomorrow.
Happy march 8th to you and all the Ladies!💫
i am very paranoid,could not sleep at all..

regarding mnd, i like to ask, IF i have it and dont know yet, is it dangerous to be alone? could i stop breathing overnight? lets say i have this cough and shortness of breath due mnd, can it happen any time ? like i stop breathing or its a gradual path ?

is it possible that one could have mnd and die before diagnosis? how do neurons die, let’s say in limbs, they die at once , function is gone at all or gets weak first? diaphragm musle stops or gets weak first and causes breathing issue ?

i know it’s sounds silly to ask, but i am alone home and don’t know much about ALS.((

thank you
Amy
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,379
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Please, when you reply do not hit the reply button as it adds a quote automatically and makes more work for those scrolling with eyes , a toe etc. use the little box at the bottom of the thread. Thank you.

someone with an fvc of over 100 percent is not going to die of ALS respiratory failure. Yes some PALS die in their sleep. If it is from ALS their respiratory function is very compromised beforehand. Of course any of us could die suddenly from an unexpected event like a heart attack, blood clot or other issue.

your fvc is really excellent. It is better than mine and I have no respiratory involvement. I have been told several times by staff at the clinic mine is better than theirs

breathing like most functions uses multiple muscles so the other muscles will compensate and problems will be apparent before anyone has to worry Your fvc says you don’t need to be concerned
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
sorry about reply button. got it now.
thank you,i feel better after your reply.🙏
ty
Amy
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
Hi all, so, i had emg done by regular neuro.
exam showed weakness in left arm only.
emg may be missed something he said.

he said my left hand looks like beginning of split hand?!.. he wants me to see neuromuscular specialist because he said i do have wasting.

also, all this days i am confused, like not well oriented and still coughing a lot.
i asked about my confusion, he told me if it is mnd i might have dementia as well??? OR if it is breathing related-my CO2 builds up???( showed him my test)

so , i am very very concerned now about all what he said.
what do you think please help me to understand. is it possible i am confused because of those things?

thank you.
Amy
oh, i did blood tests . all was fine.
 

Attachments

  • AD52C84C-5E85-4793-BABC-15C5BC6B3972.jpeg
    AD52C84C-5E85-4793-BABC-15C5BC6B3972.jpeg
    631 KB · Views: 97

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
p.s. also he told me that even he is not a als specialist , it can show up in various ways.
he said some present with limb or speech weakness but in rare cases weakness could be in diaphragm first and other body parts can look normal and become weak with the time.
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
From what you have shown, this is not consistent with ALS. It sounds more like a radiculopathy which means that some nerves are damaged as they exit the spine. ALS is a brain disease and shows up differently on an EMG.

it would be most helpful if you could include the part of the EMG where results are listed for all the individual muscles.
 

Amy O

Active member
Joined
Feb 23, 2020
Messages
32
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NJ
City
Fort lee
thank you.
i am confused , kind of cant think straight, my orientation is very bad.
 

Attachments

  • 1A47CDBC-2819-48BD-8C68-CDC30A74E6B1.jpeg
    1A47CDBC-2819-48BD-8C68-CDC30A74E6B1.jpeg
    627.2 KB · Views: 98
  • E484AB28-DB86-403C-B0FC-061A22119CF8.jpeg
    E484AB28-DB86-403C-B0FC-061A22119CF8.jpeg
    769.7 KB · Views: 95
Status
Not open for further replies.
Top