mamaoftwo
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- Aug 16, 2007
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- larchmont
Hi there
I am a first time poster but a long time lurker. I have finally gotten up the courage to join you. As crazy as it sounds, I was somehow afraid that if I joined the ALS forums, I'd be jinxing myself as it were into getting the final diagnosis - which of course, scares me as much as any of you. It has been a long journey so far (more than a year) and like many of you, I am still undiagnosed but the neuro now at least says he knows there is something wrong instead of telling me I had anxiety which is what happened the first time!
I feel like I know so many of you already - Jamie, Leslie, Ann Marie, Pat, Cindy, Al, Lou etc etc. I have followed your stories closely, watching your lives unfold as I try to make sense of what is happening to me. Before I start, one comment - you are an incredibly supportive bunch.
So here is my story. I will try to keep it as brief as I can but I know it will be long so apologies in advance.
I am a 40 yr old mom of 2 - (3yrs and 4yrs). I first had symptoms a little over a year ago. Started with a strange tremor in my thumb. I disregarded it. Put it down to a trapped nerve or something and just thought it might go away. This was in June 06. By the Fall, I had started to have odd sensations in that same arm - like someone was pouring freezing water down the inside of my arm. It would ache sometimes too so badly on occasion that I thought I was having a heart attack! By Nov, I finally decided to go see my internist who immediately referred me to a neuro. He examined me - said my neuro exam was totally normal and that I had a benign condition called Essential Tremor (which my grandmother had). He told me it may get gradually worse over the next 10-20yrs. Fine, I thought, I can live with that and off I went.
Then about a week later, I began having numbness and tingling in my right hand. Called my internist again who said that in view of the clean neuro exam, she wasnt concerned and sent me to a physiatrist for physical therapy.
So then comes the physiatrist who examines me and says, clean neuro exam but we will do an EMG to see if we can see what is going on. He comes up with an abnormal EMG study and tells me I have a cervical radiculopathy. He says he can see that I have some atrophy in my left hand - I had never noticed it! He gives me steroids, painkillers etc. I take them, it does nothing.
Back to the internist, before starting the physical therapy and she says we need to do an MRI of brain and cx spine. Both are clean. Then in Dec, the left side of my face suddenly and inexplicably goes numb - not entirely numb because I can still feel my fingers but it has what I would call altered sensation - as if I were touching my skin with gloves on or something. Make sense?
I call the physiatrist and tell him what is happening since I had an appointment with him that day anyway and he tells me that most likely I have either MS or ALS! I am FLOORED!
So I get sent immediately to an MS center where they run all the tests and say with 100% certainty, NO MS.
By this time, I have the odd pains in my arm, a burning sensation to add to the cold one!, a strange tickling sensation in the palm of my left hand that never stops, pain in the thumb pads of both hands, migratory numbness (across my neck, backs of my hands etc) and some twitching - which started in my back and would appear randomly all over my body.
So now its Feb 07 and a much more frightening diagnosis may be on the table. The ALS tests begin. I get sent to Mt Sinai in NYC. They run an EMG and did a neuro exam and said absolutely NO ALS. I was so incredibly relieved as you can imagine. But they couldnt offer any explanation and said that they have no idea why the physiatrist said my first EMG was abnormal since the one they did was completely normal. I asked about the atrophy - they said they could see none!
I try as best I can to go home and get on with my life. Whatever this thing was/is, was not going to kill me. In the back of my mind, it still niggles that it may be something very serious. And of course, the physical issues remain unresolved. I start to have trouble sleeping. Internist prescribes ambien.
By April, I decided I needed a 2nd opinion and went to Col. Presb. ALS clinic in NYC. I saw the Neuromuscular fellow there who said the usual things - pain, numbness, sensory issues are not found in ALS. "Dont know what this is but here is some gabapentin for the unexplained nerve pain". Tells me "no ALS, go home". He pretty much said I was wasting his time. He did offer to repeat the EMG at their center for my own peace of mind so I did it.
Again they said it was clean though a strange thing - when they were doing it, I could hear this odd thumping noise which wasnt there on my previous EMG. They told me it was just "a motor unit firing" and was totally normal. Nothing to worry about. But it did worry me. i thought the muscle was always supposed to be silent unless there is something very wrong.
The head guy there (Mitsumoto) reviewed my EMG and said "No ALS".
I was sent packing again.
By this time I have added a whole new problem. My family think I am going totally insane pursuing this when 2 docs have said its not ALS. They tell me I am obsessing and much like you experienced with your wife Jamie, my husband thinks I need to listen to what I am being told and give it up. I think that this is one of the hardest things we deal with. Knowing there is something really wrong and our partners/ families not being able to see it.
So then in April I begin having burning sensations across my scalp, in my throat and my tongue starts to ache and burn. I also noticed that my twitching has increased and that I am beginning to sense odd movements in my tongue (only at night when I am trying to fall asleep). I call the neuro at Col, Presb again and he says "no weakness, clean EMG, clean neuro exam - twitching means nothing in of itself".
But the pain in my throat gets so bad that I am taking painkillers all the time and putting ice packs on my tongue to relieve the aching. I felt like my tongue was too big for my mouth and I would bite it occasionally when talking. No slurring as such but felt like my mouth was getting fatigued as I tried to talk. My throat would go from mildly painful to really really sore and scratchy.
My internist sent me to an ENT who said maybe reflux. I took the pills. NOTHING!
Back to the neuro at Mt Sinai who at least had listened to me and was kind. He didnt like what he heard and said he wanted to run more extensive tests. So he sent me to an ENT and speach/lang pathologist. Had a swallow test and some kind of test where they check your sensory response in the throat.
They find something wrong immediately. I have a right side vocal cord weakness or partial paralysis. He said that it was most likely caused by a viral infection and wanted me to do rehab with a physiatrist. FULL CIRCLE IN 9MTHS and still no answers. He said that he had no idea why I had the other problems.
I went back to the neuro who reviewed the report and said that he still thinks it isn't ALS (note that delivered with way less than the original certainty) and says he wants to run more tests. So I have just had MRI of throat, chest, brainstem plus CT of brainstem with contrast and a ton of bloodwork. I am expected to see him at the end of the month to review all the tests and find out what comes next.
So here we are today. My husband thinks I am crazy to be as he puts it "obsessed with ALS". I am certain there is something sinister going on here. Even the neuro said that he knows there is something wrong but he doesnt have a name for it yet. I should add for anyone jumping on the lyme, rheumatoid stuff etc, I have done all that bloodwork and passed with flying colors.
My symptoms today are:-
- pain/burning/discomfort in my arm and throat/tongue
- frequent throat clearing and feeling like there is something stuck in my throat
- aching in my hands
- significant atrophy in left hand which is now visible to my husband but strangely no weakness yet in that hand
- bodywide twitching but I have noticed a huge decrease since starting the gabapentin. the twitching is mainly at night and will be one in the foot, one in my leg, one in my tongue, one in my arm, one in my hand. Very random, very widespread and rarely more than one or two twitches at a time
- tremor in left thumb continues but happens in other fingers too now
- shaking or vibrating sensation in my arms and sometimes my legs especially if I lean on my arms like when i am pushing the stroller.
What I don't have (yet):-
- cramps
- weight loss (in fact, have gained weight on the gabapentin which my husband says is good since I had dropped to 110lbs)
- clinical weakness anywhere but I do fatigue easily - was also told to expect that on gabapentin so who knows
- problems with swallowing, at least I dont think so.
- balance issues - no tripping or falling
So there you go. I told you it would be long. Sorry. I'd love to know what all of you think.
Jamie and Leslie, your stories gave me hope that maybe just maybe I dont have ALS but I do have visible hand atrophy now so as Ann Marie said in one of her posts "I think my goose is cooked". I have done all the things you have done - staring at my tongue in the mirror, walking on my heels/toes, home version of the babinski etc etc. I am clueless, scared and feel pretty much alone with all this.
Thanks for listening/reading. It will be good for me finally to have someone to share all my fears with. It is hard to navigate this journey and feel sick with fear but have your family telling you everything is just going to be fine. i am sure you know what I mean.
I am a first time poster but a long time lurker. I have finally gotten up the courage to join you. As crazy as it sounds, I was somehow afraid that if I joined the ALS forums, I'd be jinxing myself as it were into getting the final diagnosis - which of course, scares me as much as any of you. It has been a long journey so far (more than a year) and like many of you, I am still undiagnosed but the neuro now at least says he knows there is something wrong instead of telling me I had anxiety which is what happened the first time!
I feel like I know so many of you already - Jamie, Leslie, Ann Marie, Pat, Cindy, Al, Lou etc etc. I have followed your stories closely, watching your lives unfold as I try to make sense of what is happening to me. Before I start, one comment - you are an incredibly supportive bunch.
So here is my story. I will try to keep it as brief as I can but I know it will be long so apologies in advance.
I am a 40 yr old mom of 2 - (3yrs and 4yrs). I first had symptoms a little over a year ago. Started with a strange tremor in my thumb. I disregarded it. Put it down to a trapped nerve or something and just thought it might go away. This was in June 06. By the Fall, I had started to have odd sensations in that same arm - like someone was pouring freezing water down the inside of my arm. It would ache sometimes too so badly on occasion that I thought I was having a heart attack! By Nov, I finally decided to go see my internist who immediately referred me to a neuro. He examined me - said my neuro exam was totally normal and that I had a benign condition called Essential Tremor (which my grandmother had). He told me it may get gradually worse over the next 10-20yrs. Fine, I thought, I can live with that and off I went.
Then about a week later, I began having numbness and tingling in my right hand. Called my internist again who said that in view of the clean neuro exam, she wasnt concerned and sent me to a physiatrist for physical therapy.
So then comes the physiatrist who examines me and says, clean neuro exam but we will do an EMG to see if we can see what is going on. He comes up with an abnormal EMG study and tells me I have a cervical radiculopathy. He says he can see that I have some atrophy in my left hand - I had never noticed it! He gives me steroids, painkillers etc. I take them, it does nothing.
Back to the internist, before starting the physical therapy and she says we need to do an MRI of brain and cx spine. Both are clean. Then in Dec, the left side of my face suddenly and inexplicably goes numb - not entirely numb because I can still feel my fingers but it has what I would call altered sensation - as if I were touching my skin with gloves on or something. Make sense?
I call the physiatrist and tell him what is happening since I had an appointment with him that day anyway and he tells me that most likely I have either MS or ALS! I am FLOORED!
So I get sent immediately to an MS center where they run all the tests and say with 100% certainty, NO MS.
By this time, I have the odd pains in my arm, a burning sensation to add to the cold one!, a strange tickling sensation in the palm of my left hand that never stops, pain in the thumb pads of both hands, migratory numbness (across my neck, backs of my hands etc) and some twitching - which started in my back and would appear randomly all over my body.
So now its Feb 07 and a much more frightening diagnosis may be on the table. The ALS tests begin. I get sent to Mt Sinai in NYC. They run an EMG and did a neuro exam and said absolutely NO ALS. I was so incredibly relieved as you can imagine. But they couldnt offer any explanation and said that they have no idea why the physiatrist said my first EMG was abnormal since the one they did was completely normal. I asked about the atrophy - they said they could see none!
I try as best I can to go home and get on with my life. Whatever this thing was/is, was not going to kill me. In the back of my mind, it still niggles that it may be something very serious. And of course, the physical issues remain unresolved. I start to have trouble sleeping. Internist prescribes ambien.
By April, I decided I needed a 2nd opinion and went to Col. Presb. ALS clinic in NYC. I saw the Neuromuscular fellow there who said the usual things - pain, numbness, sensory issues are not found in ALS. "Dont know what this is but here is some gabapentin for the unexplained nerve pain". Tells me "no ALS, go home". He pretty much said I was wasting his time. He did offer to repeat the EMG at their center for my own peace of mind so I did it.
Again they said it was clean though a strange thing - when they were doing it, I could hear this odd thumping noise which wasnt there on my previous EMG. They told me it was just "a motor unit firing" and was totally normal. Nothing to worry about. But it did worry me. i thought the muscle was always supposed to be silent unless there is something very wrong.
The head guy there (Mitsumoto) reviewed my EMG and said "No ALS".
I was sent packing again.
By this time I have added a whole new problem. My family think I am going totally insane pursuing this when 2 docs have said its not ALS. They tell me I am obsessing and much like you experienced with your wife Jamie, my husband thinks I need to listen to what I am being told and give it up. I think that this is one of the hardest things we deal with. Knowing there is something really wrong and our partners/ families not being able to see it.
So then in April I begin having burning sensations across my scalp, in my throat and my tongue starts to ache and burn. I also noticed that my twitching has increased and that I am beginning to sense odd movements in my tongue (only at night when I am trying to fall asleep). I call the neuro at Col, Presb again and he says "no weakness, clean EMG, clean neuro exam - twitching means nothing in of itself".
But the pain in my throat gets so bad that I am taking painkillers all the time and putting ice packs on my tongue to relieve the aching. I felt like my tongue was too big for my mouth and I would bite it occasionally when talking. No slurring as such but felt like my mouth was getting fatigued as I tried to talk. My throat would go from mildly painful to really really sore and scratchy.
My internist sent me to an ENT who said maybe reflux. I took the pills. NOTHING!
Back to the neuro at Mt Sinai who at least had listened to me and was kind. He didnt like what he heard and said he wanted to run more extensive tests. So he sent me to an ENT and speach/lang pathologist. Had a swallow test and some kind of test where they check your sensory response in the throat.
They find something wrong immediately. I have a right side vocal cord weakness or partial paralysis. He said that it was most likely caused by a viral infection and wanted me to do rehab with a physiatrist. FULL CIRCLE IN 9MTHS and still no answers. He said that he had no idea why I had the other problems.
I went back to the neuro who reviewed the report and said that he still thinks it isn't ALS (note that delivered with way less than the original certainty) and says he wants to run more tests. So I have just had MRI of throat, chest, brainstem plus CT of brainstem with contrast and a ton of bloodwork. I am expected to see him at the end of the month to review all the tests and find out what comes next.
So here we are today. My husband thinks I am crazy to be as he puts it "obsessed with ALS". I am certain there is something sinister going on here. Even the neuro said that he knows there is something wrong but he doesnt have a name for it yet. I should add for anyone jumping on the lyme, rheumatoid stuff etc, I have done all that bloodwork and passed with flying colors.
My symptoms today are:-
- pain/burning/discomfort in my arm and throat/tongue
- frequent throat clearing and feeling like there is something stuck in my throat
- aching in my hands
- significant atrophy in left hand which is now visible to my husband but strangely no weakness yet in that hand
- bodywide twitching but I have noticed a huge decrease since starting the gabapentin. the twitching is mainly at night and will be one in the foot, one in my leg, one in my tongue, one in my arm, one in my hand. Very random, very widespread and rarely more than one or two twitches at a time
- tremor in left thumb continues but happens in other fingers too now
- shaking or vibrating sensation in my arms and sometimes my legs especially if I lean on my arms like when i am pushing the stroller.
What I don't have (yet):-
- cramps
- weight loss (in fact, have gained weight on the gabapentin which my husband says is good since I had dropped to 110lbs)
- clinical weakness anywhere but I do fatigue easily - was also told to expect that on gabapentin so who knows
- problems with swallowing, at least I dont think so.
- balance issues - no tripping or falling
So there you go. I told you it would be long. Sorry. I'd love to know what all of you think.
Jamie and Leslie, your stories gave me hope that maybe just maybe I dont have ALS but I do have visible hand atrophy now so as Ann Marie said in one of her posts "I think my goose is cooked". I have done all the things you have done - staring at my tongue in the mirror, walking on my heels/toes, home version of the babinski etc etc. I am clueless, scared and feel pretty much alone with all this.
Thanks for listening/reading. It will be good for me finally to have someone to share all my fears with. It is hard to navigate this journey and feel sick with fear but have your family telling you everything is just going to be fine. i am sure you know what I mean.
