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Guest
Guest
Let me begin by apologizing. My thoughts have a tendency to jump all over, making it difficult to follow my thought patterns. Please be patient with me.
I'm a 44 yr old single mother of 2 wonderful young men aged 23 and 18, both live at home with me. I stopped working almost 4 years ago, and since then I have been taking care of the grounds at the co-op where I live. This includes cutting the grass, planting and weeding the gardens, planning and digging new gardens, and just generally keeping the Co-op grounds looking good. In addition, I also have a very small business selling handmade chocolates, candies, and baked goods and I am an artist as well. Needless to say I have a very active, busy lifestyle.
As a child, I suffered from Petit-Mal (absence seizure) epilepsy, and although not diagnosed till many years later, also ADHD and Asperger's syndrome. I haven't had a seizure for more than 30 years. The only medication I am currently taking is Synthroid Levothyroxine Sodium 75MCG, for a borderline thyroid. It's been borderline for over 20 years, although I only started taking the medication approx 3 years ago. All thyroid tests show the medication is working. I do not drink at all, not even on special occasions, I do smoke. I also suffer from Anarexia, (at least that is what the doctors are calling it) a condition that seems to have started around the same time as the rest of my symptoms, but this is not the Nervosa type. I don't believe I'm fat, if anything I am ashamed of what my body has become. I'm 5'3 and normally I weigh between 130 and 140 pounds. I have always had an athletic, well toned body, with just a slight muffin top belly. Now I look and feel like a walking skeleton. I have lost so much muscle tone in my arms and legs that I'm disgusted when I look in the mirror. I don't keep a scale around the house, but at my last weigh in at the doctors office I was down to 97 lbs!
In the fall of 2008, I started having fits where I would just start crying for no apparent reason. They came on so suddenly and strongly, without any provocation, that they led me into a serious depression in which I tried to kill myself on 2 separate occasions. Both times I was admitted to the hospital. Both times I was sent home shortly after with no support. In the spring of 2009, I started waking up in the middle of the night on a semi-regular basis with tingling in the thumb, pointer and middle fingers of my right hand. At first I thought nothing of it. A few weeks later it progressed to shooting pains from the elbow down. I put a tensor bandage on it and googled what it could be. My research soon led me to believe I might have a mild case of carpal tunnel syndrome. So I nursed it as seem appropriate when it was bothering me and ignored it when it was not. I started having shooting pains down my arm whenever I tried to lift something over my heart, liking taking dishes out of the cupboard, or trying to pour a cup of tea. A couple of months passed with no relief when I started have similar tingling in my pinky, ring and half of my middle finger on the left hand. Google some more and figure, maybe it's time to talk to my doctor.
My doctor referred me to rheumatologist, a respirologist, and a neurologist, plus had me go for chest x-rays and an MRI. The MRI was "basically" normal. That was all the information they would give me. I have no idea what that means. Upon examination, the rheumatologist, noticed hyper-reflexes and reduced muscle capacity in my right thumb. Her original diagnosis- fibro. She started me on a regimen of Lyrica. I took it for just over 3months with absolutely no effect. On a return visit I was told we would just have to wait till it got worse, before we could know anything for sure! The neurologist performed a physical exam and sent me for an EMG and NCV. Nothing remarkable noted. My last visit to the neuro was Oct 2009.
Since then I have developed problems with walking. Originally it was just my left leg. It started just about a year ago now, I have problems putting all of my weight on it and the foot has turned out and dropped. Most days it feels as if there is a 50lb weight on my ankle. Then just about 4 weeks ago, my right leg started to give me problems. Although not as bad as the left, it feels the same. About 6 weeks ago I started to get a tingling sensation down my spine. It started off about an inch long and was located right between my shoulder blades and was aggravated whenever I used my arms for prolonged periods such as when doing dishes or kneading bread dough. In addition to all this I now have regular problems with swallowing. It doesn't happen all the time but at least a few times each day, usually when I'm eating or drinking something sweet, although again not always, I will experience a tight muscle pain right at the base of my jaw under the ear.
Now as if all this isn't enough, there is also my memory. Never the best to begin with, I find that I am loosing my words. More often than not, words simply escape me. I understand this is something that everyone struggles with from time to time but this is ALL THE TIME for me. In addition, I find that I simply can no longer trust my memory. My kids are subjected to constant re-telling of things because I simply do not remember the first, second or even third time I told them before. But the worst part of all is that I can't remember how to do simple things I've been doing all my life, like how to make a cup of tea, when did I last feed the cats, did I take my medicine, did I make the phone call I was supposed to, and if I did, what was said? And yet I can remember glancing at my mothers calendar and seeing that she has a hair appointment next Wednesday at 12, and I can remember that my son's culminating project is due on May 11.
On February 28th, I went to see my doctor again, who has referred me to another rheumatologists and another neurologists. The rheumatologist appointment is in May and the neurologist appointment is until September.
As it stands right now, I am not receiving any assistance with managing my symptoms, and they are taking their toll not only with myself but on my children as well. My oldest son also has aspergers' syndrome, and suffers unbelievable anxiety attacks that have taken over his life and made him agorophobic. It has become so bad that he is no longer able to work or even leave the house, and I know it's because of me.
Does this sound like ALS? Does anyone have any coping stratagies they can share with us while we go through this process? Due to the nature of the AS, I don't have any friends and no one to sound board off, so any insight is greatly appreciated.
I'm a 44 yr old single mother of 2 wonderful young men aged 23 and 18, both live at home with me. I stopped working almost 4 years ago, and since then I have been taking care of the grounds at the co-op where I live. This includes cutting the grass, planting and weeding the gardens, planning and digging new gardens, and just generally keeping the Co-op grounds looking good. In addition, I also have a very small business selling handmade chocolates, candies, and baked goods and I am an artist as well. Needless to say I have a very active, busy lifestyle.
As a child, I suffered from Petit-Mal (absence seizure) epilepsy, and although not diagnosed till many years later, also ADHD and Asperger's syndrome. I haven't had a seizure for more than 30 years. The only medication I am currently taking is Synthroid Levothyroxine Sodium 75MCG, for a borderline thyroid. It's been borderline for over 20 years, although I only started taking the medication approx 3 years ago. All thyroid tests show the medication is working. I do not drink at all, not even on special occasions, I do smoke. I also suffer from Anarexia, (at least that is what the doctors are calling it) a condition that seems to have started around the same time as the rest of my symptoms, but this is not the Nervosa type. I don't believe I'm fat, if anything I am ashamed of what my body has become. I'm 5'3 and normally I weigh between 130 and 140 pounds. I have always had an athletic, well toned body, with just a slight muffin top belly. Now I look and feel like a walking skeleton. I have lost so much muscle tone in my arms and legs that I'm disgusted when I look in the mirror. I don't keep a scale around the house, but at my last weigh in at the doctors office I was down to 97 lbs!
In the fall of 2008, I started having fits where I would just start crying for no apparent reason. They came on so suddenly and strongly, without any provocation, that they led me into a serious depression in which I tried to kill myself on 2 separate occasions. Both times I was admitted to the hospital. Both times I was sent home shortly after with no support. In the spring of 2009, I started waking up in the middle of the night on a semi-regular basis with tingling in the thumb, pointer and middle fingers of my right hand. At first I thought nothing of it. A few weeks later it progressed to shooting pains from the elbow down. I put a tensor bandage on it and googled what it could be. My research soon led me to believe I might have a mild case of carpal tunnel syndrome. So I nursed it as seem appropriate when it was bothering me and ignored it when it was not. I started having shooting pains down my arm whenever I tried to lift something over my heart, liking taking dishes out of the cupboard, or trying to pour a cup of tea. A couple of months passed with no relief when I started have similar tingling in my pinky, ring and half of my middle finger on the left hand. Google some more and figure, maybe it's time to talk to my doctor.
My doctor referred me to rheumatologist, a respirologist, and a neurologist, plus had me go for chest x-rays and an MRI. The MRI was "basically" normal. That was all the information they would give me. I have no idea what that means. Upon examination, the rheumatologist, noticed hyper-reflexes and reduced muscle capacity in my right thumb. Her original diagnosis- fibro. She started me on a regimen of Lyrica. I took it for just over 3months with absolutely no effect. On a return visit I was told we would just have to wait till it got worse, before we could know anything for sure! The neurologist performed a physical exam and sent me for an EMG and NCV. Nothing remarkable noted. My last visit to the neuro was Oct 2009.
Since then I have developed problems with walking. Originally it was just my left leg. It started just about a year ago now, I have problems putting all of my weight on it and the foot has turned out and dropped. Most days it feels as if there is a 50lb weight on my ankle. Then just about 4 weeks ago, my right leg started to give me problems. Although not as bad as the left, it feels the same. About 6 weeks ago I started to get a tingling sensation down my spine. It started off about an inch long and was located right between my shoulder blades and was aggravated whenever I used my arms for prolonged periods such as when doing dishes or kneading bread dough. In addition to all this I now have regular problems with swallowing. It doesn't happen all the time but at least a few times each day, usually when I'm eating or drinking something sweet, although again not always, I will experience a tight muscle pain right at the base of my jaw under the ear.
Now as if all this isn't enough, there is also my memory. Never the best to begin with, I find that I am loosing my words. More often than not, words simply escape me. I understand this is something that everyone struggles with from time to time but this is ALL THE TIME for me. In addition, I find that I simply can no longer trust my memory. My kids are subjected to constant re-telling of things because I simply do not remember the first, second or even third time I told them before. But the worst part of all is that I can't remember how to do simple things I've been doing all my life, like how to make a cup of tea, when did I last feed the cats, did I take my medicine, did I make the phone call I was supposed to, and if I did, what was said? And yet I can remember glancing at my mothers calendar and seeing that she has a hair appointment next Wednesday at 12, and I can remember that my son's culminating project is due on May 11.
On February 28th, I went to see my doctor again, who has referred me to another rheumatologists and another neurologists. The rheumatologist appointment is in May and the neurologist appointment is until September.
As it stands right now, I am not receiving any assistance with managing my symptoms, and they are taking their toll not only with myself but on my children as well. My oldest son also has aspergers' syndrome, and suffers unbelievable anxiety attacks that have taken over his life and made him agorophobic. It has become so bad that he is no longer able to work or even leave the house, and I know it's because of me.
Does this sound like ALS? Does anyone have any coping stratagies they can share with us while we go through this process? Due to the nature of the AS, I don't have any friends and no one to sound board off, so any insight is greatly appreciated.
