planningguy
Senior member
- Joined
- Jun 5, 2008
- Messages
- 556
- Country
- US
- State
- Wyoming
- City
- Sheridan
I wanted to start by saying I have been reading these forums for a while, and have been impressed by the compassion, friendship, and courage shown by many of the posters on this board. I have a feeling that for all of the individuals who post, there are many more who find hope and support just by reading. Please forgive the missive length post, but this is also serving a a way for me to vent my spleen a bit and wrap my brain around what is happening.
I am a 31 year old male, married, father of three (9, 7, and 3 years old). Like many who read these boards, I am concerned that I may have ALS. My problems started following a blood infection two years ago that left me hospitalized for a week (tetanus shot plus vincamycin). About a year after the infection I started noticing a burning sensation and tingling in my arms and legs (particularly my right arm). I ran through a battery of tests with my GP, and he concluded that I had pernicious anemia based on pretty low B-12 levels and the presence of a relevant anti-body in my bloodstream. He also prescribed Lexapro for anxiety, which I later abandoned because it made me feel too fatigued.
After balancing my B-12 levels, I noticed the symptoms continue along with chest pains and intense fatigue (went to ER twice because I thought I was having a heart attack). My GP did a full internal workup: ultrasound of major organs, echocardiogram, electrocardiogram, stress test, 24 hour electrocardiogram and blood pressure monitoring. I developed a painful stiff neck, and had an X-Ray and MRI of my C-Span, which came back clear.
I became frustrated with my GP because, although commenting offhand that the symptoms might be neuropathy related to the B-12 deficiency, he resisted referring me to a neurologist. I went to a local friend who was an ENT and had him refer me to his choice in neurologists. Thankfully, his office was in town (in our region many of our specialists are circuit riders who are only in town 1 or 2 days a week, if that). The neurologist did a much better job of listening to symptom description, and after testing reflexes and gait, decided he would do an EMG and nerve conduction study. He also reviewed my C-Span MRI and blessed it as "normal".
A couple of weeks later when I arrived to do my nerve conduction test, the neurologist stated that my results had no abnormalities, and that he felt the EMG was unnecessary. Diagnosis: lingering general neuropathy due to the B-12 deficiency and possible muscle inflammation compressing a nerve. Short story, take it easy and come back in a couple month or so.
During that month of waiting, I was fortunate enough to have a rollover car accident. My neurologist associated any changes in condition (basically more neck pain and continued tingling and burning in the arms and legs) with the accident, but opted not to follow up with any x-rays or MRI's. He referred me to a wonderful physical therapist, but in the four weeks we have been working together are quickly finding out that only a small part of what I feel is related to the neck. I have a follow up with the neurologist on July 9th (I tried to get it moved up but he is booked solid).
Some subtle things that i thought were anxiety related before have begun to intensify, and have left me terrified. My nostrils have flattened to the point that my wife has commented that my nose looks different (even colleagues at work have noticed). The difficulty in swallowing that I attributed to acid reflux has gotten to the point where it has put me off food, and I have a constantly sore and tight throat. I occasionally misspeak words, though if I carefully repeat them I usually say them to my satisfaction.
What started as stiffness in my wrists and ankles has now turned into the feeling that my calves are wrapped in cling film, and I feel cramps both there and in my biceps (the left one in particular) and jaw, as well as twitching throughout my body. My tongue tingles off and on, and I have this internal buzzing vibration that almost feels like my teeth would chatter if I put them together. Finally, the fatigue has wiped me out so badly that I've taken to going to bed at 9:30 or 10:00 and waking up at 7:00AM feeling as though I almost cannot get out of bed (last night the cramping and muscle sensations kept me up all night).
I took one last shot at my GP, and he (actually his PA) in frustration threw out the last series of tests she could think of: magnesium, glucose tolerance, sprue... all of which came back negative. I am currently in the process of trying to get into the Mayo Scottsdale Campus (we several family members in the area). My brother went there for treatment of an injury he received that lead to his own series of blood infections. When I see the neurologist on the 9th I am going to beg for a contrast MRI of both the brain and the C-Span, as well as that he conduct another nerve conduction test and the EMG.
So after writing a post that has now folded back on itself (thank you for your patience)my questions are:
1. Naturally, do these signs and symptoms sound like ALS? They seem like they are exploding all over the body, but the nose, swallowing/throat, and speaking issues have me really worried.
2. Could they be anything else? It seems that physicians here can be coaxed into pursuing other avenues, but only if approached directly by an apparently informed person.
3. If the Mayo, declines to see me. What are some other good diagnostic centers to consider? I've heard good things about UCLA, but also heard that you practically have to be a donor to get an appointment.
Again sorry for the long post. I am just a scared dad that is at wits end, and these symptoms seem to be getting steadily worse.
Robert
I am a 31 year old male, married, father of three (9, 7, and 3 years old). Like many who read these boards, I am concerned that I may have ALS. My problems started following a blood infection two years ago that left me hospitalized for a week (tetanus shot plus vincamycin). About a year after the infection I started noticing a burning sensation and tingling in my arms and legs (particularly my right arm). I ran through a battery of tests with my GP, and he concluded that I had pernicious anemia based on pretty low B-12 levels and the presence of a relevant anti-body in my bloodstream. He also prescribed Lexapro for anxiety, which I later abandoned because it made me feel too fatigued.
After balancing my B-12 levels, I noticed the symptoms continue along with chest pains and intense fatigue (went to ER twice because I thought I was having a heart attack). My GP did a full internal workup: ultrasound of major organs, echocardiogram, electrocardiogram, stress test, 24 hour electrocardiogram and blood pressure monitoring. I developed a painful stiff neck, and had an X-Ray and MRI of my C-Span, which came back clear.
I became frustrated with my GP because, although commenting offhand that the symptoms might be neuropathy related to the B-12 deficiency, he resisted referring me to a neurologist. I went to a local friend who was an ENT and had him refer me to his choice in neurologists. Thankfully, his office was in town (in our region many of our specialists are circuit riders who are only in town 1 or 2 days a week, if that). The neurologist did a much better job of listening to symptom description, and after testing reflexes and gait, decided he would do an EMG and nerve conduction study. He also reviewed my C-Span MRI and blessed it as "normal".
A couple of weeks later when I arrived to do my nerve conduction test, the neurologist stated that my results had no abnormalities, and that he felt the EMG was unnecessary. Diagnosis: lingering general neuropathy due to the B-12 deficiency and possible muscle inflammation compressing a nerve. Short story, take it easy and come back in a couple month or so.
During that month of waiting, I was fortunate enough to have a rollover car accident. My neurologist associated any changes in condition (basically more neck pain and continued tingling and burning in the arms and legs) with the accident, but opted not to follow up with any x-rays or MRI's. He referred me to a wonderful physical therapist, but in the four weeks we have been working together are quickly finding out that only a small part of what I feel is related to the neck. I have a follow up with the neurologist on July 9th (I tried to get it moved up but he is booked solid).
Some subtle things that i thought were anxiety related before have begun to intensify, and have left me terrified. My nostrils have flattened to the point that my wife has commented that my nose looks different (even colleagues at work have noticed). The difficulty in swallowing that I attributed to acid reflux has gotten to the point where it has put me off food, and I have a constantly sore and tight throat. I occasionally misspeak words, though if I carefully repeat them I usually say them to my satisfaction.
What started as stiffness in my wrists and ankles has now turned into the feeling that my calves are wrapped in cling film, and I feel cramps both there and in my biceps (the left one in particular) and jaw, as well as twitching throughout my body. My tongue tingles off and on, and I have this internal buzzing vibration that almost feels like my teeth would chatter if I put them together. Finally, the fatigue has wiped me out so badly that I've taken to going to bed at 9:30 or 10:00 and waking up at 7:00AM feeling as though I almost cannot get out of bed (last night the cramping and muscle sensations kept me up all night).
I took one last shot at my GP, and he (actually his PA) in frustration threw out the last series of tests she could think of: magnesium, glucose tolerance, sprue... all of which came back negative. I am currently in the process of trying to get into the Mayo Scottsdale Campus (we several family members in the area). My brother went there for treatment of an injury he received that lead to his own series of blood infections. When I see the neurologist on the 9th I am going to beg for a contrast MRI of both the brain and the C-Span, as well as that he conduct another nerve conduction test and the EMG.
So after writing a post that has now folded back on itself (thank you for your patience)my questions are:
1. Naturally, do these signs and symptoms sound like ALS? They seem like they are exploding all over the body, but the nose, swallowing/throat, and speaking issues have me really worried.
2. Could they be anything else? It seems that physicians here can be coaxed into pursuing other avenues, but only if approached directly by an apparently informed person.
3. If the Mayo, declines to see me. What are some other good diagnostic centers to consider? I've heard good things about UCLA, but also heard that you practically have to be a donor to get an appointment.
Again sorry for the long post. I am just a scared dad that is at wits end, and these symptoms seem to be getting steadily worse.
Robert
