Lorie
Senior member
- Joined
- May 17, 2007
- Messages
- 551
- Reason
- Loved one DX
- Country
- Uni
- State
- Alabama
- City
- Mobile
First of all. Most of you know that I am a Caregiver for by sweet brother Tim with ALS. DX March 04. Tim had symptoms long before Dx.
This is very hard for me to post. And a few of you know about me already. So many of you praise me for Loving and Caring for my brother and the work I do as an ALS Advocate.
I would like to give you a little background about myself. I have Meniere’s disease (ears) since 2002. It started from the Shingles Virus in my right ear. I have Vertigo, Tinnitus and pain. I am clinically deaf in that ear. This was a hard thing for me to live with. In Oct 04, I had convinced myself I could not live with it. (if you can read between the lines). (we did not know Tim had ALS at the time). Then I got a big “Grip”. I needed to be here for my young daughter Amelia, now 14. And my wonderful husband of 21 years now. Little did I know at the time my brother Tim had ALS. So I was needed here for a lot of reasons. I am my brothers Lifeline, so to speak. He and my Family depend on me so much. So I am going to have the conversation with you that I had with Tim and my Mom and my brothers two weeks ago. They had no Clue. I did not talk about it. I could not burden my family with everything that is going on. And me being the Leader in my family. Please understand how hard this is for me. I am emotionally torn to do this.
My Journey: (Possible ALS)
In the middle of March of 06. I was a my computer, I started to have Fasic’s/Twitches. They felt funny and I froze for a moment. (of course I thought about my brother, who wouldn’t). Since I do not waller in my own problems and I keep going. I knew in my heart something was wrong. But as usual I just kept pushing and going. Then in July 06 I started to get mild muscle cramps in my Left Foot and Calf and Fatigue. I went to my MD. She sent me to a Neuro. He did Neuro. exam and EMG and NCS. DX: BFS and PN. I said ok. I seen him a couple of times and didn’t go back until late spring of last year 07. He sent me last June to a specialist that Researches Underlying Neuro. Muscular Disorders. Neuro. Exam, EMG and NCS. He said oh, nothing is wrong with you, I am going to have the doc. Do a Magnesium, Potassium and Calcium, B12 test. I said ok, Have my MD do it. She did. It was normal. I knew it would be. I told her I was going to keep her informed but I wasn’t going back to any Neuro’s unless I had to. But I know something was wrong. Also I have already had three MRI’s from the top of my head to the lower back in two years. Results: Clean
Feb 08: The cramps had gradually sped up and had always continued with the Fasic’s/Twitches. I have a lot of Cramping (not regular back pain) in lower back. Tightness/spastic in my Legs. I went to my MD. I told her, something is wrong. I need to go back to a Neuro. I told her I was not going to see Tim’s MDA/ALS Doc. I do not like him. So she knew a Neuro. personally in the same group. She had him come to the hospital to do my EMG and NCS. Results: Consistent PSW”S /Fibbs in EMG. No Neuropathy.. A lot of denervation in my lower back. So I go back to my MD for test results. If spinal Stenoisis is ruled out with MRI. (already had it). Results point to MND. So I go back to the Neuro. for exam. Extremely Brisk Reflexes. Slight Atrophy in my Left inner ankle. And light Atrophy on my right foot. And some weakness. He is concerned that I am exempting the same pattern my brother Tim did. Except Tim’s lost his hands first and then arms. I said ok, what we do now. So on March 28th I had a Muscle Biopsy. Two inches out of my right/back Calf. I had my stitches removed yesterday. So I go back to the Neuro. on the 23rd of this month for results. He will send me to Dr. Oh in B’Ham, AL. Four hours from where we live. He is also the one studying my Biopsy. My Neuro. is great by the way. So was the Surgeon.
I am now experiencing a slight kind- of- loss of sensation in my Left Foot and Calf. Now that I can talk with Tim openly. He said he experienced the same thing when loosing his hands and arms.
So my husband is upset with me now, because I didn’t talk about the way I have felt for the last 6-8 months. But I always put others before me. And besides without the test results, why dwell on it. I went to all the Neuro. and Doc. appointments by myself until the Muscle Biopsy. I seen no reason in talking it about and upsetting anyone until the test results starting combing back abnormal.
So as I may very well be facing my own Battle. I need support. I ask myself, how did I get here? What am I going to do? The one thing I want do is give up. Too many people depend on me. Caring for my brother at the same time and now this to! I have a lot of emotions right now. So I ask you, not to give me opinions on DX. I am in reality and letting the Neuro’s Dx me. If you would like to ask me questions or comment, that will be fine.
Thank you for being here for me. You are such a great group of wonderful people.
Lorie
Very sad right now.
This is very hard for me to post. And a few of you know about me already. So many of you praise me for Loving and Caring for my brother and the work I do as an ALS Advocate.
I would like to give you a little background about myself. I have Meniere’s disease (ears) since 2002. It started from the Shingles Virus in my right ear. I have Vertigo, Tinnitus and pain. I am clinically deaf in that ear. This was a hard thing for me to live with. In Oct 04, I had convinced myself I could not live with it. (if you can read between the lines). (we did not know Tim had ALS at the time). Then I got a big “Grip”. I needed to be here for my young daughter Amelia, now 14. And my wonderful husband of 21 years now. Little did I know at the time my brother Tim had ALS. So I was needed here for a lot of reasons. I am my brothers Lifeline, so to speak. He and my Family depend on me so much. So I am going to have the conversation with you that I had with Tim and my Mom and my brothers two weeks ago. They had no Clue. I did not talk about it. I could not burden my family with everything that is going on. And me being the Leader in my family. Please understand how hard this is for me. I am emotionally torn to do this.
My Journey: (Possible ALS)
In the middle of March of 06. I was a my computer, I started to have Fasic’s/Twitches. They felt funny and I froze for a moment. (of course I thought about my brother, who wouldn’t). Since I do not waller in my own problems and I keep going. I knew in my heart something was wrong. But as usual I just kept pushing and going. Then in July 06 I started to get mild muscle cramps in my Left Foot and Calf and Fatigue. I went to my MD. She sent me to a Neuro. He did Neuro. exam and EMG and NCS. DX: BFS and PN. I said ok. I seen him a couple of times and didn’t go back until late spring of last year 07. He sent me last June to a specialist that Researches Underlying Neuro. Muscular Disorders. Neuro. Exam, EMG and NCS. He said oh, nothing is wrong with you, I am going to have the doc. Do a Magnesium, Potassium and Calcium, B12 test. I said ok, Have my MD do it. She did. It was normal. I knew it would be. I told her I was going to keep her informed but I wasn’t going back to any Neuro’s unless I had to. But I know something was wrong. Also I have already had three MRI’s from the top of my head to the lower back in two years. Results: Clean
Feb 08: The cramps had gradually sped up and had always continued with the Fasic’s/Twitches. I have a lot of Cramping (not regular back pain) in lower back. Tightness/spastic in my Legs. I went to my MD. I told her, something is wrong. I need to go back to a Neuro. I told her I was not going to see Tim’s MDA/ALS Doc. I do not like him. So she knew a Neuro. personally in the same group. She had him come to the hospital to do my EMG and NCS. Results: Consistent PSW”S /Fibbs in EMG. No Neuropathy.. A lot of denervation in my lower back. So I go back to my MD for test results. If spinal Stenoisis is ruled out with MRI. (already had it). Results point to MND. So I go back to the Neuro. for exam. Extremely Brisk Reflexes. Slight Atrophy in my Left inner ankle. And light Atrophy on my right foot. And some weakness. He is concerned that I am exempting the same pattern my brother Tim did. Except Tim’s lost his hands first and then arms. I said ok, what we do now. So on March 28th I had a Muscle Biopsy. Two inches out of my right/back Calf. I had my stitches removed yesterday. So I go back to the Neuro. on the 23rd of this month for results. He will send me to Dr. Oh in B’Ham, AL. Four hours from where we live. He is also the one studying my Biopsy. My Neuro. is great by the way. So was the Surgeon.
I am now experiencing a slight kind- of- loss of sensation in my Left Foot and Calf. Now that I can talk with Tim openly. He said he experienced the same thing when loosing his hands and arms.
So my husband is upset with me now, because I didn’t talk about the way I have felt for the last 6-8 months. But I always put others before me. And besides without the test results, why dwell on it. I went to all the Neuro. and Doc. appointments by myself until the Muscle Biopsy. I seen no reason in talking it about and upsetting anyone until the test results starting combing back abnormal.
So as I may very well be facing my own Battle. I need support. I ask myself, how did I get here? What am I going to do? The one thing I want do is give up. Too many people depend on me. Caring for my brother at the same time and now this to! I have a lot of emotions right now. So I ask you, not to give me opinions on DX. I am in reality and letting the Neuro’s Dx me. If you would like to ask me questions or comment, that will be fine.
Thank you for being here for me. You are such a great group of wonderful people.
Lorie
Very sad right now.
