Here for my mom

[pll1954]

Hello I am here for my mother, she has not been diagnosed with ALS as of right now but has a appointment for a spinal tap next week. I do not believe the neurologist has done an EMG? Anyway he seems to think she has ALS. I would just like to tell you her symptoms and get an opinion. About 6 months ago my mom was well my mom. Today she is forgetful, always repeating herself, she chokes on the smallest pieces of food and can't swallow pills, she trips over things when she walks, her left foot turns inward when she walks, her speech is so bad noone can understand her when she talks, she has muscle cramps in her arms and calves of her legs mainly. Is forget fullness or what seems to be dementia included in the symptoms of ALS? If an EMG is the best test why have they not done one on her yet, crappy doctor maybe? So confused right now. would like somones opinion please asap

 

[Nikki J]

My sister had a spinal tap before diagnosis the EMG was the last thing. It sounds like her physician is thorough. Has she had mri yet? Yes in a percentage of ALS there is dementia too usually something called FTD. I am sorry that you are facing this but until she has had a full work up including tons of blood work,mri and emg at least have hope it is something else. How old is she?

 

[FSHolbrook]

the first thing I would do is talk to the neurologist and ask how he can be sure it is ALS without and EMG. There is a connection with ALS and FTD. I would have the EMG prior to a spinal tap. You and your mom are now on my prayer list.

Rick

 

[Nikki J]

Spinal tap can, among other things, pick up some of the more obscure causes of dementia. It sounds as if you have not been able to go with your mom to all the appointments? Is someone with her who can accurately report what she is told? Are you on her HIPPA forms?

 

[Dusty7]

Some doctors like to throw ALS out on the table right away--to get the worst possible news out there.
But I don't think he can possibly "seem to think she has ALS" without an EMG. I agree with Rick--EMG first, then spinal tap because a clean EMG kicks ALS off the table. I agree with Nikki that Spinal tap can also be useful, but it seems EMG is a simpler, quicker test that could give a definitive answer of what it is not. And as Nikki said, "until she has had a full work up including tons of blood work, mri and emg at least have hope it is something else." And an EMG might prove it is something else.
Good luck!

 

[pll1954]

My mom is 60. Yes she had MRI done about two weeks ago. Question, is the EMG the test where they stick all the needles in you? She did have a test like that. (im sorry im not very smart when it comes to things like this) I do know after she had that test is when she came home and started talking about ALS. I have not been able to go to her dr appointments with her yet but I am from now on. She is very stubborn and doesnt want to tell me everything the dr says to her. She just keeps telling me she is fine. Thank you for your help. She has an Appt next and i will keep you up to date.

 

[pll1954]

I have not been able to go to the appointments with her. I am from now on though. My mom is very stubborn and I know she has not told me everything that the Dr has said to her either because she forgets what he says or she just does not want to. I am her youngest out of four kids. My brother lives hours away from us and my two older sisters although they live in the same town just dont really care what is going on. My mom thinks i can not handle it im sure.

 

[pll1954]

I have so many questions right now. One being her Dr told her not to work anymore about a month ago. So she quit on the same day he told her this. She has no insurance and no income. We are working with an advocate for disability but i do not know what to do in the meantime. I have two sisters that live in the same town but they just dont care about my mom and my brother lives hours away from us. My mom is divorced and lives alone. I am trying to move her closer to me right now she is about 15 min away but i just dont know how i can do anything with no money. If anyone can point me in the right direction please !

 

[Nikki J]

Hi yes the EMG is done with multiple needlesticks as they test the various muscles. It sounds like she is having all the tests. Of course she wants to protect you but she will need your support for sure. It is good that you are going to appointments now. Please keep us posted

 

[MaxEidswick]

>My mom is 60. Yes she had MRI done about two weeks ago. Question, is the EMG the test where they stick all the needles in you? She did have a test like that.

yes, that Sounds like an EMG.

ALS is often difficult to diagnose. There is a specialty client in Houston where they offer three day diagnostic session specifically to address ALS.

It is in the Houston Methodist medical Center headed up by Dr. Stanley Appell.

It's a long drive for you but it's better to be sure for such an important diagnosis.

Kind regards,

Max

 

[Nikki J]

If she has an ALS diagnosis and has current work credits for social security she will qualify for benefits without a long waiting period. Once you go to an appointment and know you can get started on that.

 

[pll1954]

Well bad news today. Both of the neurologists my mom has seen say that that she does have ALS. My only question right now for you guys is what do i/we/she need to do in order for the social security office to help us quicker. Thank you for your help.

 

[Atsugi]

When dealing with the Social Security department, I made sure to use the words "terminal diagnosis" and reference the "Compassionate Allowance" program to expedite matters. Call the Social Security 800 number and make an appointment. They'll tell you which papers to bring to the meeting.

May I make an observation? Mom has been independent for decades, and now is faced with the most complex and important news of her life. She might not want her children involved. Some do. Some don't. Be sensitive to her feelings on the matter. Of course, that is hard to do, but then, who has the hardest situation? Additionally, she might not want to be a burden on her children.

 

[MaxEidswick]

Also, if your mom is a vet, contact the PVA asap. The VA has incredible resources.

Also, call the closest MDA office, give them a rundown and see what resources they may have.

These upcoming weeks will And emotional roller coaster for all hands. Remember everyone's progression with ALS is different so don't panic.

Lastly, I don't know of any ALS specific clinics in the Dallas area, but in my experience being associated with an ALS client does two important things: (1) it helps was research to track our progression and (2) it provides an opportunity to meet other ALS patients.

In the case of our ALS clinic in Houston, we have a scheduled quarterly group gathering where all of the eight or so disciplines prod and draw blood and do all of that Dr. stuff and the 30 of us have a chance to meet and talk.

Max

 

[pll1954]

Ok so I gave the paper with my moms diagnosis to the advocate who is helping us with her disability case. Now what? DO I just sit and wait for them to contact me? Or do i contact them? Any advice would be great right now. thank you