Hi everyone--I've read the forum for a while and find you all warm, informative and inspiring, so thank you for taking the time to read this... This is my first post.
FOA, I am a 31 year old woman, almost 32. I'm very scared, as are many on the board, understandably so. I don't even know where to begin because my neurological symptoms go back almost 12 years. Looking back though I am unsure whether those symptoms are unrelated to the ones I've had over the last 20 months. If you want the earlier history, I'll include it in my response.
At 27: I had a very bad case of vertigo that lasted for about a week and was accompanied by a stiff neck. At 29 I suffered a back injury, which caused me to experience radiating pain down the leg from the moment I woke up to the moment I went to sleep for about six months from beginning to recovery. I did an MRI of the lumber spine, which showed no herniated disc or degeneration. After 6 weeks bed rest, I woke up one morning and was just better. Over the next 6-8 weeks I made almost a full recovery.
A few months later I woke up one morning with a fine tremor on left hand. After a series of neurological tests and an MRI I was told that I was in good health, even though the MRI was abnormal and showed: “A flair signal abnormality in the periventricular white matter, primarily long the posterior aspects of the lateral ventricles…this is a nonspecific pattern, consistent with a variety of inflammatory, demyelinating, vasculitic etiologies.” My balance was not bad, but definitely effected and I had some discomfort in my neck, but it wasn’t severe or consistent.
During the next sixteen months, I grew more and more fatigued. I gained a lot of weight, had a stiff neck often and my balance became much worse. Furthermore, my arms and feet would get extremely cold; I have had heavy limbs and tripped a couple of times. Even worse, I experienced brain fog a number of times and noticed a few incidents of slurred speech and vision. There were times when I would wake up in the morning and my arm would be extremely numb. For most of that time I also had tearing from my left eye.
In December 2007 I had my first muscle spasm and went through weeks of fasciculations. They now happen every once in a while, but aren’t steady. Very rarely, when doing something like moving a mouse, I have a tick. I also have had pain radiating from my neck down my arms. Initially, I didn’t think there was any weakness, but I have noticed that there might be some weakness recently. There has been numbness in both arms and my wrists and fingers hurt, particularly after a day of typing and clicking the mouse at work. I have had facial numbness on my left side and an episode where my left eye twitched pretty intensely for about 30 seconds, and a couple of eyelid twitches on my right side. I’ve noticed a slight change in bladder control or urgency, especially when coughing or at times in the middle of the night. I am stiff and tired all the time and only feel normal for the first few minutes of every morning. The most alarming symptom, which has only happened twice thus far is a cold sensation entering from the top of me head and then travels down my body to my feet. The first time it only happened for a few minutes, the second for about two hours. At the emergency room they did a CT scan, which showed nothing alarming.
For the past two weeks the other symptoms have stopped with the exception of occasional Bell's palsy, sometimes feeling like it over the bridge of my nose, but even that has gone away almost completely. I have muscle spasms again, but not overwhelmingly, bad cramping in my right leg (and a tiny bit on my left now), which never stops and I feel stiffness in my right arm and some tightness/minor cramps in my chest on the right side. The cramping began, followed by a day where I felt like my leg was tingling, similar to when your limb regains sensation after being asleep, but it was COLD, feeling like it was submerged in cold water. Cold hands and feet, by the way is chronic. Also, consistent ankle pain on both sides, which has gotten a little better, and wrists pain. In addition, I experience jaw and dental pain, my soles hurt and at times burn, hypnic jerks, stress incontinence and bladder urgency, increasing sleep dysfunctions (early and frequent waking, a stabbing pain last night), headache, and eye pressure, sore throat, and occasional bouts of swollen lymph nodes, popping ears, dry and productive cough and sinus pain.
I had an EMG on Feb 5th because of the pain down the arms on the recommendation of my PCP. It showed that my lower limbs are normal, but the neurophysiologist stated it showed I had some “irritation” in my left arm and sent for an MRI of the C-spine. The MRI of the C-spine was normal. I am still not sure what that means and worry that my muscles are dying. I have had a second brain MRI on the recommendation of my new neurologist who seemed to think upon reading the first MRI report that it was likely MS. In the second MRI they discovered a congenital brain defect (not responsible for symptoms), but nothing that could definitely point to MS, such as legions. In addition, I have seen a well-reputed MS Specialist that requested a lumber puncture, which I did on April 15th. My MS doc told me that everything looks normal so far. My urinalysis showed trace amounts of bacteria. My two Lyme tests have both been negative, as has my Lupus screening.
I am scheduled to see an LLMD on 05/01 on the suggestion of a person who has Lyme disease, but I wonder whether I should schedule an appointment with an ALS specialist and a possible second EMG?
Thanks again for reading this TOME. I'm afraid to even post this... LOL Here goes....
FOA, I am a 31 year old woman, almost 32. I'm very scared, as are many on the board, understandably so. I don't even know where to begin because my neurological symptoms go back almost 12 years. Looking back though I am unsure whether those symptoms are unrelated to the ones I've had over the last 20 months. If you want the earlier history, I'll include it in my response.
At 27: I had a very bad case of vertigo that lasted for about a week and was accompanied by a stiff neck. At 29 I suffered a back injury, which caused me to experience radiating pain down the leg from the moment I woke up to the moment I went to sleep for about six months from beginning to recovery. I did an MRI of the lumber spine, which showed no herniated disc or degeneration. After 6 weeks bed rest, I woke up one morning and was just better. Over the next 6-8 weeks I made almost a full recovery.
A few months later I woke up one morning with a fine tremor on left hand. After a series of neurological tests and an MRI I was told that I was in good health, even though the MRI was abnormal and showed: “A flair signal abnormality in the periventricular white matter, primarily long the posterior aspects of the lateral ventricles…this is a nonspecific pattern, consistent with a variety of inflammatory, demyelinating, vasculitic etiologies.” My balance was not bad, but definitely effected and I had some discomfort in my neck, but it wasn’t severe or consistent.
During the next sixteen months, I grew more and more fatigued. I gained a lot of weight, had a stiff neck often and my balance became much worse. Furthermore, my arms and feet would get extremely cold; I have had heavy limbs and tripped a couple of times. Even worse, I experienced brain fog a number of times and noticed a few incidents of slurred speech and vision. There were times when I would wake up in the morning and my arm would be extremely numb. For most of that time I also had tearing from my left eye.
In December 2007 I had my first muscle spasm and went through weeks of fasciculations. They now happen every once in a while, but aren’t steady. Very rarely, when doing something like moving a mouse, I have a tick. I also have had pain radiating from my neck down my arms. Initially, I didn’t think there was any weakness, but I have noticed that there might be some weakness recently. There has been numbness in both arms and my wrists and fingers hurt, particularly after a day of typing and clicking the mouse at work. I have had facial numbness on my left side and an episode where my left eye twitched pretty intensely for about 30 seconds, and a couple of eyelid twitches on my right side. I’ve noticed a slight change in bladder control or urgency, especially when coughing or at times in the middle of the night. I am stiff and tired all the time and only feel normal for the first few minutes of every morning. The most alarming symptom, which has only happened twice thus far is a cold sensation entering from the top of me head and then travels down my body to my feet. The first time it only happened for a few minutes, the second for about two hours. At the emergency room they did a CT scan, which showed nothing alarming.
For the past two weeks the other symptoms have stopped with the exception of occasional Bell's palsy, sometimes feeling like it over the bridge of my nose, but even that has gone away almost completely. I have muscle spasms again, but not overwhelmingly, bad cramping in my right leg (and a tiny bit on my left now), which never stops and I feel stiffness in my right arm and some tightness/minor cramps in my chest on the right side. The cramping began, followed by a day where I felt like my leg was tingling, similar to when your limb regains sensation after being asleep, but it was COLD, feeling like it was submerged in cold water. Cold hands and feet, by the way is chronic. Also, consistent ankle pain on both sides, which has gotten a little better, and wrists pain. In addition, I experience jaw and dental pain, my soles hurt and at times burn, hypnic jerks, stress incontinence and bladder urgency, increasing sleep dysfunctions (early and frequent waking, a stabbing pain last night), headache, and eye pressure, sore throat, and occasional bouts of swollen lymph nodes, popping ears, dry and productive cough and sinus pain.
I had an EMG on Feb 5th because of the pain down the arms on the recommendation of my PCP. It showed that my lower limbs are normal, but the neurophysiologist stated it showed I had some “irritation” in my left arm and sent for an MRI of the C-spine. The MRI of the C-spine was normal. I am still not sure what that means and worry that my muscles are dying. I have had a second brain MRI on the recommendation of my new neurologist who seemed to think upon reading the first MRI report that it was likely MS. In the second MRI they discovered a congenital brain defect (not responsible for symptoms), but nothing that could definitely point to MS, such as legions. In addition, I have seen a well-reputed MS Specialist that requested a lumber puncture, which I did on April 15th. My MS doc told me that everything looks normal so far. My urinalysis showed trace amounts of bacteria. My two Lyme tests have both been negative, as has my Lupus screening.
I am scheduled to see an LLMD on 05/01 on the suggestion of a person who has Lyme disease, but I wonder whether I should schedule an appointment with an ALS specialist and a possible second EMG?
Thanks again for reading this TOME. I'm afraid to even post this... LOL Here goes....
I will absolutely keep my Lyme appt. I had an EMG less than 3 months ago; do you think I should have a second one? I'm going to see a Neurologist this coming Monday, as well. I'll keep in touch.
