elpwilke
New member
- Joined
- Dec 8, 2011
- Messages
- 6
- Reason
- Loved one DX
- Diagnosis
- 03/2012
- Country
- TX
- State
- TX
- City
- Coppell
Hi, my mother is 72 yrs old and is under the care of a neurologist. Her symptoms include: muscle loss in right hand, speech slurred, difficulty in chewing, weight loss (10lbs), saliva drool, few times the jaw cramped at night, chattering of teeth at night time, yawning and recently poor appetite and out of breath. The neuro completed a CTC for spine and there was some spondylosis which he attributed to age, C5, 6 & & had problems. She completed an EMG and Nerve Conduction test, Nov 30, 2011. When we went to visit in December, Neuro made a comment that there wasn't enough details from the EMG Dr and neuro would need to speak to EMG Dr. This worries me since Neuro has mentioned ALS in November but also said he does not want to find ALS as the diagnosis. A Pulmonary function test is scheduled for next week.
My mother was in excellent shape, hiking 5-7 miles every weekend, even in March of this year. She lives by herself out of town, not close to her family. She drank a lot of wine every day and stopped drinking 3 months ago. She continues to think that the muscle atrophy and speech are caused by the wine and withdrawal symptoms. I put together a schedule of times to eat and included nutritional drinks (neither her primary or Neuro suggested the drinks). Now, I am worried that she has ALS. I have many questions to the forum:
1) the symptoms sound like ALS but the neuro doesn't wish to diagnosis. Bulbar ALS. I found an ALS Neuro in Dallas and would like to bring my mother here for additional tests. How hard should I push to have this done? Right now, she is worried but does believe that she can beat the illness. She has a positive spirit and if I push for a second opinion it might hurt her emotionally and physically.
2) She agrees to moving to Dallas to be closer to my brother and myself. How quickly should I push to move her to be near us? She lives by herself now in a house.
3) She tried an open MRI and could not complete due to claustrophobia. neuro has now given her a mild sedative tablet to test and we will try again late January. She was the one who wanted to delay. This might be denial on her part. I just don't want to push hard for a diagnosis since she might not wish to fight and live as long as she can. Any other suggestions for MRI? Can I hold her hand during the test?
4) Right now, her legs work fine, she dresses, eats and takes care of herself. Can I move her to a retirement home which is what she wants? She doesn't want to live with me and my husband. I want her to have hope and live in an apartment. The ALS chapter mentioned a residential home which I do not want her to go into if possible.
5) Are there other tests that the neuro in her hometown should be completing? She did fall on her head in June and still has a concave in her head but neuro wasn't concerned with that since that would not cause muscle loss.
6) I did read the posting on Rilutek on this forum. She is on Medicare so it might be covered but if there isn't a diagnosis, no Rilutek at this time.
7) any other advice to help her and the family?
I want to protect her while helping her and not sure what steps to take. I don't want to do anything wrong to speed up her progression but want to do as much as possible to prolong her life and remind her living is an option. Thank you for any and all comments.
My mother was in excellent shape, hiking 5-7 miles every weekend, even in March of this year. She lives by herself out of town, not close to her family. She drank a lot of wine every day and stopped drinking 3 months ago. She continues to think that the muscle atrophy and speech are caused by the wine and withdrawal symptoms. I put together a schedule of times to eat and included nutritional drinks (neither her primary or Neuro suggested the drinks). Now, I am worried that she has ALS. I have many questions to the forum:
1) the symptoms sound like ALS but the neuro doesn't wish to diagnosis. Bulbar ALS. I found an ALS Neuro in Dallas and would like to bring my mother here for additional tests. How hard should I push to have this done? Right now, she is worried but does believe that she can beat the illness. She has a positive spirit and if I push for a second opinion it might hurt her emotionally and physically.
2) She agrees to moving to Dallas to be closer to my brother and myself. How quickly should I push to move her to be near us? She lives by herself now in a house.
3) She tried an open MRI and could not complete due to claustrophobia. neuro has now given her a mild sedative tablet to test and we will try again late January. She was the one who wanted to delay. This might be denial on her part. I just don't want to push hard for a diagnosis since she might not wish to fight and live as long as she can. Any other suggestions for MRI? Can I hold her hand during the test?
4) Right now, her legs work fine, she dresses, eats and takes care of herself. Can I move her to a retirement home which is what she wants? She doesn't want to live with me and my husband. I want her to have hope and live in an apartment. The ALS chapter mentioned a residential home which I do not want her to go into if possible.
5) Are there other tests that the neuro in her hometown should be completing? She did fall on her head in June and still has a concave in her head but neuro wasn't concerned with that since that would not cause muscle loss.
6) I did read the posting on Rilutek on this forum. She is on Medicare so it might be covered but if there isn't a diagnosis, no Rilutek at this time.
7) any other advice to help her and the family?
I want to protect her while helping her and not sure what steps to take. I don't want to do anything wrong to speed up her progression but want to do as much as possible to prolong her life and remind her living is an option. Thank you for any and all comments.