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DCL1964

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Mar 22, 2010
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37
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CALS
Country
US
State
VIRGINIA
City
WOODBRIDGE
My brother Allan was diagnosed with ALS this year. He lives with me in a house our parents and I owned together before they died. I'm having problems accepting this diagnosis. The doctors we have seen so far at VCU and Georgetown don't seem to listen to their patients. Everyone has to send in their residents to ask questions and perform tests that in my opinion the head doctor should be doing. I feel like there is something we're not telling them or that we're not saying properly. I'm getting angry at what I'm feeling is a good waste of our time. My brother is talking about going to see someone at Johns Hopkins soon and I'm hoping someone will take the time and listen or ask us questions. It seems like when one doctor diagnoses ALS and you go to get a second opinion and that doctor asks what the first doctor diagnosed and you say ALS they don't even want to look at any tests or try any new tests, they just simply agree. My brother has been laying in a bed in my home since June 2007 wasting away. He can still walk and talk. He has some symptoms of ALS and some that none of these doctors have ever addressed. I read alot of posts on this forum and I read up on alot of what everyone asks questions about, hoping something will lead me to some answers for my brother and me.
 
What are the symptoms they've never addressed? What are the test results from his original diagnosed?

If you don't want to deal with residents, tell them so! He's not a guinea pig to be prodded and poked! You must speak up! No one will do it for you. You will find that dealing with ALS means you will be the voice and advocate for your pALS!

If the docs you are seeing now don't give you satisfaction, then by all means, go to John Hopkins or any other ALS Clinic to get those answers.

Good luck and good courage!
 
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As always, CJ gives wonderful advice on how to best be the advocate your family member needs! ABSOLUTELY speak up and make sure he is getting the attention he deserves.

This is NOT a process for the weak/faint of heart! Dig in and find your mama lion!
Peace to you,
 
They've never addressed the tightness he feels across his chest, why he feels bad the next day after riding in a car for 2 hours, the way that some of his other symptoms seem to come and go. These are some of the reasons I question the ALS diagnosis. My brother gets agrivated when I start to ask questions. He always says things like "Doctor Lock has a question" or "This should be good." He told me after I called his pulmonologist to see if he could get his neurologist to call him back after he had call him two days earlier "This is MY problem, not yours." I've done almost everything for my brother. I've put myself in finacial trouble by taking a year and a half off after his neck operation in January 2008 because none of his adult children or friends could or would help him. I always have to take time off to get him to his doctor. His daughter lives 15 minutes from us and she does nothing to help him or me. The last time I brought it up she said she's poor and needs to go to work. She doesn't have a mortgage or a car payment to make. She's 30 and she lives with her maternal grandparents. I've told her if I lose the house, I'm gone and she'll have to take care of her dad because it isn't my responsibility.
 
Wow, I'm so sorry that you are having to deal with all of this. Honestly, the tightness in his chest could be ALS related. Maybe he is just not communicating it properly. Mom had issues like this for some time and would say things like..."I an feel something here, I can't cough it up, My chest hurts" She is now on a ventilator. If you are not happy with the place you are going to...yes go some place else BUT remember it is ultimately your brother who has to make the decisions on what to do. Maybe you need to have a family meeting and talk to them all at the same time. Lay some ground rules and STICK to them. You can only do so much. Contact Hospice and your local ALS chapter. With ALS, they do tests to rule out other diseases. There is really isn't a "test" for ALS. I hope you can get some relief from this.
 
DCL1964... a couple of comments. At Hopkins, they will insist on re-testing your brother because they do their own testing, regardless of what VCU and Georgetown have done.

The tightness in his chest is something I experience off and on, and I attribute it to the muscles causing some sensory involvement as they atrophy. There can be sensory issues with this disease: my feet which are long gone feel as though I'm wearing tightly laced boots--a similar phenomenon.

Fatigue is often a very real part of the disease. Riding in a car for two hours would leave me exhausted also the next day. So does visiting with friends and talking on the phone. I'm "feeling strong" for only a few hours per day.

Symptoms do have an aggravating way of appearing for a while, and then (blessedly) going away. Not the major symptoms, such as weakness or fatigue, but odd things, like itching, or the sudden urgent need to pee. It is different for each of us. The doctors generally haven't any idea why these things happen, either. I've found, as have many others according to comments, that the patients and caregivers often, as we progress, do know more than the doctors in many cases.

Thank you for taking care of your brother. I sense that you don't feel a sense of gratitude, which is hard. I can't answer why he can walk yet lies in bed all the time. I wonder about the neck surgery and whether his neck is in bad shape.

I also wonder if your brother could attend the ALS Clinic held at Johns Hopkins. They may let him since he already has a diagnosis. The Clinic there is very well thought of by others in the forum who attend.

Blessings,
Ann
 
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I'm not looking for applause or mounds of praise. All I'd like is for him to not treat me like dirt. All I'm trying to do is help him. Saying his disease is HIS problem is wrong when he's living in my house and I'm taking him places and doing things for him. Making decisions about doctors and treatments is his call. I only tell him how I feel about it but it IS his decision. He might have ALS but we are both living with it.
 
Your spot on DCL1964. Unfortunately, I think the loss of independence for PALS can make some of them difficult. My husband can be that way. It's hard for me to take, too. I don't want my 16 year old son to think he can someday treat his wife like this. I try to talk to my husband about it when he is not combative. I've also had a few other people (who have seen the behavior, and know it is not normal for him) talk to him about it. We have ups and down with it. Having this forum helps so much more than I can begin to say.
 
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