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.
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.