At Mayo clinic with Mother....appt tomorrow

[admlizkirk]

My mom has been progressively going downhill for several years. She started with vertigo and not being able to keep her balance and with severe neck pain. She then started dropping her right foot, though she thought that is was from a vein they took from her leg for her open heart surgery. Just to start, my mother has a cancer history, Hodgekins lymphoma when she was in her 20s and breast cancer in her 40s. Full range of chemo, lots of treatments etc. as well as heart issues stemming from all the treatments

Anyway, she started very subtly slurring her words, then weakness in legs mainly and arms. She now coughs/chokes on food easily, can barely walk under her own power, can do very little for herself. Weakness in arms, all over. She is tired all the time. Her mind is there for the most part, but a little slow on the uptake. She is 65 years old, and her voice goes out from time to time. She's been to see many neuros, has had nerve conductivity test, mri's (normal, no lesions), and several other tests I am still not sure. IS the EMG the needle conductivity test. She had a muscle enzyme test and it was registering zero, which I guess is odd. She has no atrophy that is visible, just recently had some twitching, but nothing major. She doesn't have facia of the tongue or anything like that, but has had instances of where she can't get words strung together, her face goes numb and she almost seems like she is having a stroke. She gets better after sleeping it off, but doesn't do this all the time, or even recently.

We are at Mayo because nobody seems to know what she has. Obviously I have my own ideas about this being ALS, possibly bulbar onset. She has some respiratory issues, but we always thought that was due to her heart problems. She has severe heart damage, and had a valve replaced about 9 years ago, so we knew she was on borrowed time for that.

She has emotional issues, but mainly just from not being able to do anything anymore, not inappropriate crying, though her nerves have been bad for some time. We have been noticing slow decline for at least 3 years, with noticable decline to this in the last year.

Tests start tomorrow. I am just trying to deal with all this and get through the night. I know if it is ALS we have a rough road left, but honestly, its been rough for many years. I just need to know what is ahead of me.

Any thoughts would be appreciated.
Thanks

 

[hopingforcure]

The good news is your are going to be at the beginning of some long coming answers. I do not think it sounds like ALS, it could be a ton of things. We will be here, we care, and hope you will feel comfortable here while you are helping your mom with this battle, whatever it turns out to be.

 

[admlizkirk]

Thanks

I feel like I am all alone here. My dad is having such a hard time now because he is her caregiver and he doesn't always know how to deal with her. I am glad I came up here with them, wasn't going to before. Very stressful, but I will be glad to know what it is finally. Hopefull not too much more waiting.

 

[admlizkirk]

Appointment is today at 12:15. Guess we will find out what happens today. I doubt we will know anything today, but this is a start. I just hate to watch what is happening to her. I am a mess today trying to get ready to take her over there. I am trying to be strong, because she is very nervous and she does't take stress well anymore. She is having trouble talking today too, more than usual, I assume stress.

More to come

 

[crystalkk]

Hang in there, it's good that you are there with them ask alot of questions. It could be so many different things.
In a way it is good that she is having trouble talking today so they can see it for themselves.

Please keep us posted,

 

[admlizkirk]

well she is dreading what tests they are going to do. EMG more than likely, even though she's had one already at home. She has to be sedated to do MRI's now, because she can't handle it. The problem is the sedation makes her wacky, I mean really wacky, even the mildest kinds. So I hope they don't want to do another MRI. There is nothing on the MRI's anyway.

Yeah, I'm glad she is having more of her symptoms today

 

[admlizkirk]

They are leaning heavily towards ALS at this point, she has all the markers. We are going to be here through next Friday, bascially two weeks up here. They are trying to rule out lots of things, but he thinks is could be MSA or ALS on the bad side, Parkinsons or Myestina Gravis on the good side. (good right)

 

[planningguy]

I'm sorry you have to be going through with this. I spent a good portion of last year coping with my mother's illness (cancer not ALS), so I can empathize a little with the stress.

That you're here on the forum, and there with her seeking answers is a reflection of your love for her. I just got back from the Mayo Rochester, and it is an amazing (yet sometimes daunting place). I hope that whatever is ailing her is on the "good" side of the possibilities. This is a wonderful forum. Feel free to ask any questions you may have, or just vent.

Take care,

Robert