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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.
 
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.

Push as hard as you need. You know your mom and her limits. It is hard enough to get medical on your side, so I would push for every test until you get a diagnosis.

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.

Wait for diagnosis. Sounds like your dr. is moving pretty quick anyway so diagnosis shouldn't be that far off. Might be something manageable she can handle on her own for a while...as a caregiver...you don't want to wear yourself out before you are really needed.

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?

Every time I took one there was no one allowed in the room with. Sedative should definately help. With holdiays coming you are going to have a hard time rescheduling so I would just wait for Jan. appt. Let your mom take this time to kind of process the situation at hand.

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.

A lot depends on diagnosis. Also her abilities. Does she feel uncomfortable living in the house now? Why? Ask her as well!

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.

That is true for the muscle loss.If MRI is of her head this will rule out any problems with the fall though. Wait for MRI results.

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.

Don't put the horse before the cart. Wait for the diagnosis...you have already determined she has it! There are so many other possibilities for the symptoms you described. Wait for the tests and the dr.'s opinions.

7) any other advice to help her and the family?

Again, slow down. Don't determine that she has a death sentence from what you know now. It was not smart of your dr. to already mention ALS to you if he wasn't sure. I know it is hard not to worry or think the worse, but honestly there are Thousands of other neurological problems that could cause your mom's symptoms. And most of all, ask her what she thinks about it and what she feels? Sometimes, as a caregiver you can get so caught up in the logistics that you forget to ask what they are feeling! This is very important! Let her have a chance to explore and explain her feelings.

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.
 
Many thanks for the advice. Will follow and share with my brother.
 
I would definitely push for other tests and to see a neuro dr who deals with ALS patients. Nothing more frustrating than trying to find out what is wrong. As for Rilutek, I can give you what our experience was with it. My FIL took it. We asked him if it helped him. He told us that it helped with the muscle cramping and muscle spasms. Other than that, he said he could see no other differences. It also was pretty expensive. My sister opted for a different treatment: Cyclobenzaprine for the muscle pain and Gabapentin for the nerve pain. Both of these were covered by her insurance at the lowest tier cost level and did not cost her very much. The Rilutek would have been at the highest tier cost level and would have been more expensive.
 
Hello everyone. Request advice again please for my mother who has not yet been diagnosed but appears to be Bulbar symptoms and atrophy in her right hand. We visit her GP on Dec 27 to review the results of a pulmonary capacity test, blood work for Myastaneia gravis. We have done much of the ALS diagnosis backwards. When her GP quit the business in May and told my mom to work with a neuro only, we didn't think to visit a GP for some of the other tests. The Neuro did a CTC Spine, EMG but never told us the results. Her speech is still slurred but she has gained weight with drinking 4 Ensure type of products a day and some regular food. She was not able to complete an Open MRI due to claustrophobia. The neuro suggested another try with MRI and taking a sedative which I hope to convince my mother to attempt in January.

Any advice on questions to ask the GP about the pulmonary tests or what I should be listening for? the GP called my mom and told her to stop taking Nexium since her liver levels were elevated and we discuss at the next appt. Are there other tests that a GP could request since we might have skipped some steps? I have not visited the GP to know if he is trying to rule out ALS, but appears as if he is.

Has anyone visited the Dallas UT Southwestern Neurology Clinic? Dr Jeffrey Elliott's name was mentioned by the North TX ALS chapter to me. As a daughter, I have been reading up on ALS and trying to offer advice to my mother about eating, breathing, sleeping without mentioning ALS since no one has given us the diagnosis. My goal is to move my mother to a retirement home in the Dallas area since she currently is by herself in El Paso TX. At this time, she does not want to stay at my house in Dallas, but that might change. thank you for advice for our next GP visit and comments about UT Southwestern.
 
As far a the pulmonary test you want to find out what your Mom's FVC is. The number will be based on what is expected of a women of her age, height and weight. So if she scores 100% then she is right where she needs to be, over 100%% she is ahead of the game and int he 90's and high 80's you do not have too much to worry about at this time. Obviously the lower the number gets the harder it is for her to breathe. Other tests to ask about is the NIF or MIP (maximum inhale pressure) and MEP (maximum exhale pressure). If they did them they can explain them to you.

As far as what a GP can do for you it depends on what has already been done. What all blood tests have been done? The typical one's they do are lyme (western blot is the best) B-12 defficency, hyperthyroidism, for some reason my Dr. did a test for spotted mountain rocky fever or something like that, there may be a few others your GP will think of.

What I am curious about is this concept that the Neuro does not wish to give an ALS diagnosis. I imagine no Dr once to give that diagnosis. I have my suspicions that in some cases that is why the diagnosis takes so long because I am sure no Dr once to gives that diagnosis and I am sure some Dr's keep thinking of tests because they do not want to give that diagnosis. As my neuro, Dr. Glass says I lose everyone of my patients.

Anyway I suggest that you see the Dr that the ALS association gave you the name of. They will obviously be familiar with the disease, and honestly many neuros have never seen a case of ALS. They will also be equipped and have the needed support to give you the diagnosis if it comes back as ALS. Most importantly if it is actually ALS going to a clinic is the best thing because it becomes one stop shopping for the patient. You get to see the Neuro, pulmanary therapist, physical and occupational therapist, Nurses familar with ALS, social workers etc. If it comes back that it is not ALS they will be able to perhaps provide with another diagnosis or point you in the right direction.

Good luck and Merry Christmas!
 
Re UT Dallas clinic: haven't been there but the UT system is good overall (disclaimer: I worked in it) and the UT-D clinic is one of MDA's affiliated ALS clinics.
Re MRI w/ a benzo premed: you cannot hold her hand but she can bring her favorite music or tune in a radio station. Ask the clinic about its options. Also, there is no reason you can't be in the room if you work it out in advance, especially to help settle her in, but with the noise once the test begins, you won't really be able to hear each other. You can also ask the tech to hop in with reassuring messages via the mike more often than usual, as well, but if your mom isn't used to benzos, she may fall asleep, anyway.
As for the tests your mom has already had, ask for copies of each and every report. Unless you have compelling reason to do otherwise, I would walk through them with your mom, as well; whatever the ultimate diagnosis, it is likely to be less a shock if you have built up to it together. Since you want her to move and she has agreed, that will also lay a foundation for collaborating on her care once she is there in Dallas.
As far as GP questions, you want to ask and make a note of what alternative diagnosed should be considered and what tests are needed to rule them out, from that person's point of view. It would also be good to know if objectively s/he feels the muscular weakness has worsened since the last visit. But be aware that UT-D docs may very well want to repeat the EMG and possibly MRIs if they are equivocal. Bloods drawn in El Paso should be fine, but I wouldn't put mom through any more major scans until you are hooked into UT, if that is where she is going to end up.
I hope a treatable cause is found. Best of luck at the visits to come.
 
hi,i am sorry to hear about your mother and i agree with the advice you have got so far.
however , a word of warning.............if it comes to it and you are able to cope you should have your mother live with you.
i had a friend called del who had bulbar onset and he was in seagoville texas,he had his peg done way too late and his wife had him taken straight from hospital to a nursing home.
while del's nursing home was good with no abuse ect they were not equipt to look after him,he hated it there and within weeks he had deteriorated and he died.
i think if you can a loved one should be cared for at home,you have to be carefull with nursing homes as many are badly run and there can be abuse.
hope you get more answers over the next weeks with tests,i am praying it is something treatable.
 
Thank you for the suggestions and advice. I have not been asking for results of any of the tests, including the EMG so will ask for that next time we visit the doctors. I do know when the Neuro requested the EMG, he wrote ALS on the RX for the EMG Dr. Instead of getting an MRI done in El Paso, her home town, I will suggest my mother come to Dallas to meet a neuro at UT Southwestern for a second opinion and get the MRI done in Dallas. Also, at that time UTSW might request additional new tests or repeats of tests. Regarding having her living with me vs a nursing home is an option but right now, my mother does not believe ALS is the diagnosis. She is focused on stabilizing with her current speech, eating, breathing, hand muscle difficulties and that a retirement community is the best. This forum is very helpful but at the same time frighting since the progression is different for everyone. Thank you for sharing.
 
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