markpnw
New member
- Joined
- Jul 6, 2009
- Messages
- 4
- Reason
- Other
- Country
- US
- State
- Oregon
- City
- Portland
I have been reading this forum for about two months now and am so impressed by the support and information provided by the members. I am hoping to learn more and share my own experiences now as a member. I aoplogize in advance of for the long post but it is my first time on the forum and I want to provide some background before asking questions.
19 months ago (December 2007) I experienced acute symptoms of blurry vision, fatigue, pins/needles on head/hands/feet, headaches, brain fog, and ear ringing. The vision improved, on its own, within a month. The pins/needles and headaches improved within 2 months. I had negative brain and cervicle MRIs and blood tests galore (all negative). The brain fog, in-and-out fatigue, general vision (ability to always focus) issues persisted. 6 months into not feeling well I had was tested for metals by a naturopath and urine showed elevated levels of mercury. I chelated for 2 months and my mercury was lowered almost to normal. Blood tests also showed I had a high ANA Titer which shows that I may have an autoimmune disease. After countless blood tests I have reynaulds and may end up having limited scleroderma but at this point I do not.
In Februaury 2009 I suddenly experienced extreme stiffness/pain in my hands. X-rays, sedimentation rate, etc. showed no inflammation or arthritis. The pain went away after a few weeks. In March 2009 I experienced hip pain which limited the ability to walk or stand for very long. My hips have improved but are still sore and I have problems standing or walking for very long without pain.
In April 2009 I started to experience muscle pain/subjective weakness bi-laterally in feet, hands, ankles, lower arms, and shoulders shoulders. Within in a couple of days the pain/ weakness appears to be mostly on my right side (foot, calf, arm, hand). My right foot, ankle, hand feels stiff/tight and it is painful to grip anything for more than a couple of minutes. By the end of April fasiculations started in my right foot and has now moved into right arm, right calf, left foot, left calf, chin, and hands. I also get occasional sharp pains in limbs and it hurts to smile/laugh do to mild jaw pain. I had a clean EMG and NCV test one month after feeling the fasiculations. I am told that I have no clinical weakness, although I feel much weaker than usual. The Neuros and Rheumatologist have no explanation have thought it may be a neuropathy, glycogen storage disease, or perhaps a very early sign of a MND. I have poured over the internet and have seen countless doctors. My symptoms seem to be getting worse and progressing quickly over the past three months.
1. Does anybody know if you can have an EMG and/or NCV test too early? Was your first EMG/NCV test clean and then show problems later?
2. Did anybody have an autoimmune disease prior to being diagnosed with a MND/ALS?
3. Do people with a MND/ALS typically have brain lesions?
4. I understand that myopathies and neuropathies typically do not occur with fasiculations. I have been told by a Neuro that I likely do not have benign fasiculation syndrome because I have muscle pain and other symptoms. What else can be associated with fasiculations?
5. I am incredibly scared and concerned that all of the docs do not know what to do nor have they suggested further tests (e.g. spinal tap, glycogen storage disease tests, etc.). Has anybody else had similar symptoms that progressed into a MND/ALS or soemthing else?
Thank you very much for any response.
19 months ago (December 2007) I experienced acute symptoms of blurry vision, fatigue, pins/needles on head/hands/feet, headaches, brain fog, and ear ringing. The vision improved, on its own, within a month. The pins/needles and headaches improved within 2 months. I had negative brain and cervicle MRIs and blood tests galore (all negative). The brain fog, in-and-out fatigue, general vision (ability to always focus) issues persisted. 6 months into not feeling well I had was tested for metals by a naturopath and urine showed elevated levels of mercury. I chelated for 2 months and my mercury was lowered almost to normal. Blood tests also showed I had a high ANA Titer which shows that I may have an autoimmune disease. After countless blood tests I have reynaulds and may end up having limited scleroderma but at this point I do not.
In Februaury 2009 I suddenly experienced extreme stiffness/pain in my hands. X-rays, sedimentation rate, etc. showed no inflammation or arthritis. The pain went away after a few weeks. In March 2009 I experienced hip pain which limited the ability to walk or stand for very long. My hips have improved but are still sore and I have problems standing or walking for very long without pain.
In April 2009 I started to experience muscle pain/subjective weakness bi-laterally in feet, hands, ankles, lower arms, and shoulders shoulders. Within in a couple of days the pain/ weakness appears to be mostly on my right side (foot, calf, arm, hand). My right foot, ankle, hand feels stiff/tight and it is painful to grip anything for more than a couple of minutes. By the end of April fasiculations started in my right foot and has now moved into right arm, right calf, left foot, left calf, chin, and hands. I also get occasional sharp pains in limbs and it hurts to smile/laugh do to mild jaw pain. I had a clean EMG and NCV test one month after feeling the fasiculations. I am told that I have no clinical weakness, although I feel much weaker than usual. The Neuros and Rheumatologist have no explanation have thought it may be a neuropathy, glycogen storage disease, or perhaps a very early sign of a MND. I have poured over the internet and have seen countless doctors. My symptoms seem to be getting worse and progressing quickly over the past three months.
1. Does anybody know if you can have an EMG and/or NCV test too early? Was your first EMG/NCV test clean and then show problems later?
2. Did anybody have an autoimmune disease prior to being diagnosed with a MND/ALS?
3. Do people with a MND/ALS typically have brain lesions?
4. I understand that myopathies and neuropathies typically do not occur with fasiculations. I have been told by a Neuro that I likely do not have benign fasiculation syndrome because I have muscle pain and other symptoms. What else can be associated with fasiculations?
5. I am incredibly scared and concerned that all of the docs do not know what to do nor have they suggested further tests (e.g. spinal tap, glycogen storage disease tests, etc.). Has anybody else had similar symptoms that progressed into a MND/ALS or soemthing else?
Thank you very much for any response.