newly diagnosed mother

[neen]

Hi

My mother was recently diagnosed with ALS and I am going to meet with her neurologist soon. I'm not sure about the diagnosis and want to know what questions would be beneficial to ask to assure it is an accurate diagnosis.

Thanks!

 

[Barbie]

you want to know what tests they performed--MRI, EMG, Nerve conduction. If the Neuro is an ALS specialist, does he/she have a clinic? (a monthly group appointment very helpful to most ALS patients). if not, get a referral to a close by clinic. The neuro is really just one of a team of doctors that she will need.

I see you are from Rockland--My husband lived there when he was a kid! we have been there several times.


Good luck!

 

[neen]

Thanks ~ I know they did an EMG when she was referred to a neuromuscular specialist at the Lahey clinic from the neurologist here in Maine. From everything I've read it seems to be a process of elimination but I can't quite figure out what other problems it can be confused with or exactly what combination of testing confims a diagnosis. She has been trying for several years to figure out what was going on and has been progressively getting worse.

 

[neen]

Barbie - Rockland is a llloong way from Orlando but I bet the weather is much warmer there right now! I'd ask you husbands name, except its a public forum and this is all new to me. Thanks for the info & enjoy some sun for me

 

[Nighthawk]

A suggestion would be to contact your local chapter of the ALS Association (ALSA) and let them know that your mother has been diagnosed with ALS.
They will send a representative to your home to assess your mother's needs, specifically in regards to equipment such as Rollators, wheelchairs, AFO's, shower seats, hospital beds, etc.
They would loan your PALS all this equipment from their "Loaner Closet" so you and your mother can stay steps ahead with the necessary equipment as the disease progresses.

I hope this helps.


NH

 

[CRR10]

Hi, I am a 28 year old Male that is currently in limbo land without a definitive diagnosis. However, my chest is caved in and the neuro suspects some type of MND. They do not believe ALS because of clean EMG but regardlessI am in very bad shape. I understand the toll it can take on a young person, and I have the same issues with my mother. I am really looking to speak with a younger person with MND. This whole situation has hit me like a ton of bricks out of nowhere and I understand his sadness and frustration. Please let him know that there are other young people facing the same issues, and feel free to send me a message.

 

[CRR10]

Sorry posted in wrong thread.

 

[dianan]

My suggestion--look online for cures of ALS and stick with it. I found many cures for ALS and told my mom (who has ALS) about all of them and she didn't listen to me because they cost too much money (changing diet, using foot-nerve therapy, etc). Her condition has only gotten worse and I can't help but think that if only she would have spent her money on the cures rather than spending her money on 20+ different doctors, trying to find one of them that would tell her that she really doesn't have ALS, then she could possibly be cured now.

 

[Barbie]

Sadly, There is no cure for ALS.

 

[FormyMammaw]

unfortuneatly there is NO cure for ALS however there is therapies and medications to slow the progress of the disease down and to make life maintainable and bearable

 

[neen]

Thanks everyone. We did see her neurologist who says this is only his 3rd ALS patient. I'm still not 100% convinced on the diagnosis but we are headed back to the Lahey clinic Thursday. I hope to get more information then, especially testing results etc. I saw something online (in the many many pages of info. I have devoured lately) and am going to see what testing exactly has been done and what has been ruled out. I do see a lot of very exciting research being done. One that has just made it to through the first trial on humans looks especially exciting. A lot of information seems conflicting on things like...does exercise help....anyone have some personal opinions on this? some sites say it makes it worse other say not moving makes it worse. and apparently there is ongoing research on that also.

 

[pearshoot]

my experience with strength and endurance exercise in the early stages makes me a strong supporter of it. the test is now underway at four locations (i think) my positive symptoms appeared in apr 09. started exercise program soon after and still do it, you must listen to your body and back off as it gets weaker. upper body machines minimum weight 10lbs now from a high of 70lbs, lower body weight now 50 lbs from a hig of 140lbs. i hav e taken a lot of flack on this forum for my positions on various subjects so i suggest you get additional information. where am i in this journey, i still walk, talk, eat, and breath on my own. i am sure there are others in my condition that believe nothing helps