Hello all,
I have been a lurker on your forum for the past couple of weeks. I have been amazed by how informative and compassionate people have been. I am hoping you will read and comment on my story.
Just over a year ago, I developed hip pain I walk (A LOT!). At first, I thought it was just from all the walking, Later last year, the pain continued and I started to get pain in my upper back and shoulder. Earlier this year from an MRI, I found out that I had tendinosis (chronic tendinopathy) of the hip and also a burst cyst. The back x-ray showed that I had degenerative disc disease I had a cervical and thoracic MRI, which revealed nothing new (no pinched nerves). The pain in my shoulder continued as well, but the doctor said it was probably bursitis No follow up was ever done on that shoulder, but I was referred to a rheumatologist.
He did a full blood panel, which found nothing out of the ordinary. I started to get pain in my other shoulder and started noticing some weakness in my arm. Then I started getting muscle spasms in my upper back/shoulders and an extreme tightness on the left side up to my jaw. I also started getting muscle twitching. For a while, my right leg (pelvic area) was bothering me too. I went back to my general doctor, who said it was stress and that the twitching was normal. He prescribed muscle relaxants for the evening, and Xanax for the daytime. The pain continued and so did the weakness. I was now having difficulty lifting things (with both arms), so I went back to my rheumatologist. I asked about the possibility of Fibromyalgia (since I felt like I had all over pain), but he said he felt that was more of an "all in your head" illness. He made me do some stretches and told me I most likely had hypermobility joint syndrome. However, because of the weakness he decided to send me for an EMG. (My appointment is two days from now)
Last week, was when everything changed. I actually started feeling better because my back pain went away. I still had some weakness and some pain in my arms, but I thought things were starting to get better. Then, came the muscle twitches. It started in my feet, then in my calves. They seemed unrelenting. It really started to scare me. I started to get them all over, including my tongue. I also started really looking at my biceps - they looked very soft, no real form. I went back to my doctor, who gave me a quick exam. He said my reflexes were good, but I have weakness in the upper and lower limbs. He decided it was time for a neuro consult. He's also testing my thyroid and CK (for muscle issues). He thought it might be Myasthenia Gravis or Rhabdomyolysis. When I asked him about ALS, (hoping he would say, it's rather rare and you're young), he said....I can't say for now. You need to see the neurologist.
I have been agonizing over this for the past week.
In the past few days, my symptoms have gotten worse. Especially in my left arm and right leg. I have weakness and pain when I lift things and when I walk. I have also been trembling. My first appointment with the neurologist is tomorrow morning. I know it's just the first step. While I am curious to see what he will say, I'm also terrified.
Sorry for the long story, but I thought it would be better to explain all the symptoms. As much as I want to believe, hope and pray that it is something else....I have the lingering fear that won't go away.
So now, what do all you lovely people think?
DD
I have been a lurker on your forum for the past couple of weeks. I have been amazed by how informative and compassionate people have been. I am hoping you will read and comment on my story.
Just over a year ago, I developed hip pain I walk (A LOT!). At first, I thought it was just from all the walking, Later last year, the pain continued and I started to get pain in my upper back and shoulder. Earlier this year from an MRI, I found out that I had tendinosis (chronic tendinopathy) of the hip and also a burst cyst. The back x-ray showed that I had degenerative disc disease I had a cervical and thoracic MRI, which revealed nothing new (no pinched nerves). The pain in my shoulder continued as well, but the doctor said it was probably bursitis No follow up was ever done on that shoulder, but I was referred to a rheumatologist.
He did a full blood panel, which found nothing out of the ordinary. I started to get pain in my other shoulder and started noticing some weakness in my arm. Then I started getting muscle spasms in my upper back/shoulders and an extreme tightness on the left side up to my jaw. I also started getting muscle twitching. For a while, my right leg (pelvic area) was bothering me too. I went back to my general doctor, who said it was stress and that the twitching was normal. He prescribed muscle relaxants for the evening, and Xanax for the daytime. The pain continued and so did the weakness. I was now having difficulty lifting things (with both arms), so I went back to my rheumatologist. I asked about the possibility of Fibromyalgia (since I felt like I had all over pain), but he said he felt that was more of an "all in your head" illness. He made me do some stretches and told me I most likely had hypermobility joint syndrome. However, because of the weakness he decided to send me for an EMG. (My appointment is two days from now)
Last week, was when everything changed. I actually started feeling better because my back pain went away. I still had some weakness and some pain in my arms, but I thought things were starting to get better. Then, came the muscle twitches. It started in my feet, then in my calves. They seemed unrelenting. It really started to scare me. I started to get them all over, including my tongue. I also started really looking at my biceps - they looked very soft, no real form. I went back to my doctor, who gave me a quick exam. He said my reflexes were good, but I have weakness in the upper and lower limbs. He decided it was time for a neuro consult. He's also testing my thyroid and CK (for muscle issues). He thought it might be Myasthenia Gravis or Rhabdomyolysis. When I asked him about ALS, (hoping he would say, it's rather rare and you're young), he said....I can't say for now. You need to see the neurologist.
I have been agonizing over this for the past week.
In the past few days, my symptoms have gotten worse. Especially in my left arm and right leg. I have weakness and pain when I lift things and when I walk. I have also been trembling. My first appointment with the neurologist is tomorrow morning. I know it's just the first step. While I am curious to see what he will say, I'm also terrified.
Sorry for the long story, but I thought it would be better to explain all the symptoms. As much as I want to believe, hope and pray that it is something else....I have the lingering fear that won't go away.
So now, what do all you lovely people think?
DD
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