opinions needed it this is bulbar als or not

[ak74]

I am posting regarding my MIL.

she is 71. About a year ago, she started complaining she couldn't go the park and walk like she used to. We thought is was age related. About Oct./Nov of 2014 she fell while taking out the trash. Said is was wet and her shoes were slick. She didn't put up her hands to stop fall. Found it strange, but a one time thing.

Around the end of Nov. 2014, she complained of a heavy head, couldn't hold up her head. We didn't know where to start or what the cause could be. Maybe it will get better. It didn't.

Christmas 2014, she visited with us. She drove approx. 35 mile one way. Was having trouble holding up her head. It was either up or down with no in between. She would sometimes lift it with her hand.

Feb 2015... She can no longer go to the store. Too Tiring. We start buying her food for her. She is still able to live independently. We schedule a visit to her Dr. Does Cat Scan and it comes back good. Schedules neurology appointment.

March 2015...We prepare her food so all she has to do it warm it to eat. Having much trouble to go outside because of weakness. Neurologist thinks it is muscle related and not nerve. Does and electrical test to test muscle ( emg? ) Prescribes prednisone ( 60 mg ) Which makes her worse. Quits taking it after 2 days.

April 2015... She calls us because she can't get up for couch or bed. We bring her to stay with us. When we help her up, she can walk with aid of walker ( the walker is new ) but needs help with all daily activities.

General things we observed but without knowing what time it was noticed.

She has lost most fine motor control. Hands very weak and cold. Has lost more upper body strength than lower. Has pretty good control of her feet.

She is having trouble swallowing. They recommended Thickit, but she doesn't like it. Have noticed that she does better with thick liquids that thin.

Having trouble keeping food in her mouth. Awkward would be the best way I know to describe. It doesn't really fall out that much but it does sometimes.

Having trouble speaking. English is not her first language, but her English has always been very clear. Now it is getting where she is hard to understand. Sometimes it is better than others. She also seems to have trouble finding the word she is looking for. Don't know why. ( Can't think of it or can't say it )

It seems like some personality changes. This is hard to explain. Things that used to make her angry, don't make her as angry. Is it personality changes or is she just to tired to get mad?

Whatever she has is very fast progressing.
my guess is bulbar als. maybe with something else also. nothing else seems to fit the symptoms

She says she doesn't want to go for more tests. We understand this and will try to follow her wishes. She has started physical therapy.

Thanks

 

[Atsugi]

Such a mystery. I can't guess. The neurologist seems to have ruled out bulbar ALS, yes?

Whatever it is, I'm glad to hear you're trying to follow her wishes. At 71, she's earned the right to make her own decisions without pressure from others.

 

[ECpara]

Did her doctor give you the results of the EMG? That should have shed light on whether to consider ALS. The Cat Scan would only be used to rule out anything else, ALS doesn't show up on this. I have to admit, a lot sounds like Bulbar Onset ALS (my husband has this). Sorry it is so fast progressing, that would not be unusual for Bulbar Onset. If it is, physical therapy won't have any effect. Perhaps base possible future tests on how she responds to therapy. If there's no improvement, pursue an ALS diagnosis, but if there is improvement, no ALS! Best of luck.

 

[cheerleader]

If she had an EMG, it would have detected ALS. Many of her symptoms are like my husband's but- there are other things that mimic bulbar ALS. I would definitely talk to the doctor ( if she gives permission.). Things like physical therapy could be harmful if given by someone not familiar with ALS, so you really need to know what the EMG revealed.

 

[Barbie]

take her for a second opinion with a different neuro. see if you can get into an ALS clinic. not all neuros are the same and do not all know about ALS or other rare diseases.

 

[ak74]

She likes the physical therapy. Only did it for a week or so before she got worse. Don't think it is related to therapy though. We are trying to get is back started again.

She is from a different medical system and doesn't like the way it is here. It is hard to explain, but she wants it to be different. I don't think she will go to another Dr. We would have to travel 2 hours or more to see anyone at a ALS clinic. They would probably want to start tests over again and that would not be good.

One more question.......We raised the bed and sofa about 6 inches. She can get up from them now. Would or could that be the case with ALS? Or would you never be able to get up again?

Thanks

 

[Nuts]

If some, but not all, of the leg muscles are gone, then she would be weaker but possibly able to stand if the bed is raised.

I agree with Atsugi about your MIL making decisions about treatement, but if you are going to care for her I believe you deserve to know what you are dealing with so that you can prepare yourselves. I think she should do the testing for your sake.

If it is ALS, she needs to see an ALS specialist, not a general neurologist.

 

[ak74]

She doesn't want to go to the Dr.'s anymore. We will have to use an assisted living for care.

We want to follow her wishes, and will all that we can.

 

[Atsugi]

...We raised the bed and sofa about 6 inches. She can get up from them now. Would or could that be the case with ALS? Or would you never be able to get up again?

Yes, raising the bed and sofa helps in the beginning, when the legs are weak. And when the legs become useless, a raised bed makes it easier to pick her up to put her in the wheelchair.

 

[lgelb]

Does she have smaller muscle mass than before, or can't you tell?

ALS is probably as good a guess as whatever myopathy the neuro thought s/he was treating with prednisone. It would be good to know what the theory was, if you can get copies of the chart notes.

I agree that if she doesn't want more tests, she doesn't want more tests. Does she still do activities that she enjoys or has she just given up on things? There are decent guides for dealing with quadriplegia on line. I'd read up. But if it looks like things are headed the way we are guessing, someone should speak with her to at least hear her say in a fully-informed context that she doesn't want, for example, a feeding tube.

To make sure the PT is of the right sort is another reason worth circling back to the doc to the discussion of what she might have. She can sign a HIPAA form and you can do the calls/e-mails, if she's done w/ the process. Of course, I would make sure that the legal paperwork is done in terms of an advance directive, Will, and powers of attorney.

 

[ak74]

Update

She went back to the neurologist yesterday. Required for physical therapy.

He explained that he really needed muscle biopsy to see what is going on. She refused for a while, but finally consented.

He still thinks it is muscular and may be treatable. Gave us a copy of her EMG. We don't know what to look for. Said that he has experience with ALS and doesn't think that is it what she has.

After hearing about this visit, I have more confidence in him.

Maybe we can get some answers, but it will be at least 2 - 3 weeks before we have biopsy results back.

Thanks

AK

 

[Atsugi]

Thanks for the update.

 

[Dusty7]

Regarding the EMG, the first thing to look for is the summary, which in plain English should give the results.

From there we can guide you deeper into the report, but start with the summary or findings.

 

[ak74]

Since my last post, we have had muscle biopsy and are waiting on results. She has declined significantly. More trouble walking and breathing.

We are concerned about the breathing. Her oxygen level is in the 80's when moving but higher at rest. She doesn't move much.

I have read that oxygen is counter indicated for ALS. Without an ALS diagnosis, if we take her to emergency room or to a general practitioner or even a lung Dr. , oxygen will used? This just started being noticed in the last week. We are going to try to contact neurologist for Bipap. ( good luck with that because he doesn't believe ALS )

Will oxygen hurt or help in short term? Is a diagnosis only from a Neurologist?

 

[Nikki J]

The oxygen issue is because with ALS we end up holding onto CO2 and oxygen can be deadly. See if you can get pulmonary function tests and especially arterial blood gas test ( ABG).