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Handmaiden

Member
Joined
Dec 9, 2010
Messages
19
Reason
Loved one DX
Diagnosis
01/2011
Country
Uni
State
TX
City
Dallas Fort Worth
In January my brother will have been undergoing tests by his neurologist for a year. Brain MRI, Cervical/Thoracic MRI, blood tests, 2 EMGs, more blood tests, antibody test, and nerve conduction testing. He has had cramping, slurring of speech, and twitching for 20 months and is becoming progressively worse. His neurologist said she has a protocol to follow before confirming a diagnosis - is this true?

He originally went to his GP regarding right hand cramping and slurring of speech, then the GP referred him to a neurologist, who then referred him to another neurologist who specializes in Myasthenia Gravis and ALS.

At first, according to his neurologist his symptoms were all upper motor neuron based. However after his second EMG on December 3rd, she indicated that he was also showing lower motor neuron deterioration. She stated that both upper and lower was an "indicator of ALS" she said she was seeing faciculations (sp?) in his shoulder and in his tongue. Then she said he needed to go through more tests - so she ordered a cervical/thoracic MRI and more blood work. We go back for those results on the 27th of December. If those are negative she wants to do a spinal tap and a respiratory test. How many more tests have to be done before she can say it is ALS? Or is it realistic at this point to think it could be something else that just looks like ALS?

My brother and I are very close and he shares a lot with me, so I am very aware of things going on in his personal life, which is not good right now. He will spend hours pouring out his heart and then the next day completely shut me out by not responding to my phone calls, emails or text messages. He will be hugging me one minute and glaring at me the next.

After his recent MRI he lashed out at me - which he has never done, over a question about an airline flight ? He pulls me close - then pushes me away and it is emotionally exhausting. I don't know what to do - does he need me to completely back off? Should I be proactive and continue to be at his appointments with him - or let him go alone? I have been going to his doctor appointments and testings with him so he is not alone and so I understand what is going on with him since he doesn't let us (his family) know.

Or are these mood swings and lash outs another symptom or result of ALS?

The "looming" ALS diagnosis is causing such stress with everyone involved - I want to be a good support system for him, but I am for the first time in our relationship having a hard time understanding what he needs me to do for him.

Thank you for taking time to listen, I hope I didn't ramble too much. This disease affects so many people and I am glad to have found this site and a community of people who support, listen and help guide people through this process. You are each so precious and brave and I pray as I move forward I am able to obtain the strength that I have witnessed within the pages of this site.
 
I would say the stress of the diagnostic process could certainly cause the mood swings. There are cognitive issues faced by some ALS patients that could also be causes. He really needs to discuss this with his doctor ... preferably with someone with him who has seen the behaviors and explain them objectively. It could be something as simple as need an anti-depression medication could even things out.
 
a huge part of getting an ALS diagnosis is ruling everything else out, so that is why his doctors want to do so many tests. its actually a good thing and they sound very reliable.
As Katie said, some folks end up with a form of dimentia when theyre diagnosed with ALS, which can cause mood swings. But dont automatically think thats what it is. Keep in mind that your brother is facing his own mortality right now and that is very difficult for alot of folks. Put yourself in his shoes and imagine how you would feel if you were being tested for a disease like ALS. Im sure you already have done this. Im just saying that it can and most like will be extremely difficult to come to terms with all of it.
As for him sharing alot one day, and then pushing you away the next- it could be that he is wiping himself out emotionally and just needs to shut down to recooperate.
I am hoping that they find something other than ALS. But if not, you have found the right place. Please keep us updated and good luck to you and your brother. He's a lucky guy to have you.
 
I don't understand why It has taken this long for so many test, and a spinal tap and a pulmonary test, which are very important, the test they did on me was for a thing called kennedys because it had to go to a DNA lab, I know how your brother feels, he wants answers, we who are sick at times get caught in our problem, not being able to do things for ourselves, he gets moody over his illness, and you might get tired of dealing with it. I hope you get answers soon
 
Handmaiden, I just wanted to say that if they should skip even one test, they may miss finding a treatable disease. However, it sounds as though if this is ALS, the only other test I had added on which you don't mention is Neuro blood work done at my home by Athena (who hold the monopoly). I'm pretty sure your brother is very thankful for you, although you get to be on the receiving end of his anger, assuming this is just the normal and horrible frustration that is associated with such lengthy stress. I imagine he's scared. I'm sorry you're in firing range, but hope it's simply stress and fear... and that it is resolved with acceptance. It is tough. Best wishes to you both.
 
Hi Yes it is really hard on the person trying to find out what the heck is happening to their body.Larry is still trying to find out his diagnosed & it's been 4 yrs.he has mood swings as i like to call them cry's for no reason he is depressed most of the time as his family don't even come over but that's nothing new.it's been worse since his dad passed 2yrs ago.Just be there for him .God Bless you & your family this is a tough road to be on.
love Sharon
 
Abbas child what kind of blood test did they do at Athena for you? I think Larry has had about everything know to man but maybe not.Thank you
Sharon
 
Sharona, I had to stop and think. First, you should know that Athena does actually do this test at Hopkins, but the one person whom I needed was out that day--the day of my last testing there. Later they scheduled to come to the house. As for the tests, the only one I remember is syphilis--the Neuro told me it was standard protocol and not to be shocked... so of course I remember that one. There were, I believe, three vials taken. Understand, they're again making sure there is nothing going on that is treatable.
Ann
 
Hard to deal with, and good advice given already-- my two cents is that your brother needs you right now, and please don't let him go to his appointments alone: (a) he will need the emotional support regardless of his mood at the moment, and (b) having someone along to take notes is so helpful.
We will all be pulling for you and your brother.
Sue
 
Handmaiden-
I'm so sorry you and your brother are facing the possibility of him having this dreadful disease. I have little advice beyond what's already been said; I just felt compelled to offer some words of support to you.

I’m still new to this forum, but the many compassionate, understanding and supportive souls here have become a true blessing in my life. If your brother is diagnosed with ALS or another difficult NMD, I hope you both find this a safe and welcoming place to help you cope, vent, mourn, learn, understand, find encouragement and even laugh at and celebrate the journey we all are sharing.

Wishing you strength and a measure of peace.
 
My friends,
I am so thankful for the gift of each of you during this time. Thank you so much for taking time to help me understand another face of this disease. I know that the emotions I have been feeling only pale in comparison to what my brother is going through. I know the doctors did do testing for HIV and syphillis as well - so thanks for mentioning that. Next appointment - December 27th, so until then......
 
Abbas Child,
Is the Neuro blood work you had done - the test which tests for HIV and Syphillis? If so - they have done those tests on him. She said she wanted to order a spinal tap and a respiratory test next. I hope that is the last of the tests they have in their arsenal to do. Your right - he is frustrated because he wants to know whats wrong.

Thank you for being a source of information and comfort - I have seen your dedication to others on this site - you are such a blessing! Have a wonderful Christmas and thanks for being there.
 
Handmaiden- youre right. Ann is awesome and such a blessing. I consider her our forum mom.
Ann- hope you dont mind that label.
 
Liz, it is too sweet. I don't mind... but I do remember THE forum Mom, and can't touch her in any way. Hugs to you, Liz.

Handmaiden, I'm waiting to see if my husband can find my file from the diagnosis process. We changed houses since then, and I've never seen it again. I'd love to be able to have the Athena list, if possible, to share. I'll get it to you if it exists. The thing is, I'm not positive they gave me a list... but as soon as I have the file, I'll check it out and return.
 
I hope by me saying that- calling Ann the forum mom- that I havent offended anyone. I didnt realize that there once was someone on here considered THE forum mom. I mean no disrespect to that person or to folks who were/are friends with her. Im sure you all realize that I meant no harm, but I just wanted to say it to you all.
 
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