juleva81
New member
- Joined
- Jul 18, 2020
- Messages
- 8
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- ES
- State
- MD
- City
- Madrid
Good afternoon. First of all thank you very much for making this effort to respond to people like me who still do not have a clear diagnosis but are suspicious and afraid of having ALS. Much encouragement in your fight -that may be our fight as a society-. Sorry for my English, I will try to summarize my process but it will be difficult for me because it is a long process and it worries me a lot. I am 38 years old the mother of two little girls.
First I will say that I have Hashimoto's Thyroiditis, with the hormones controlled but with the Anti TPO always elevated - usually at 500, now they are more than 1,000-.
In April- May 2019-, after a viral process -for which I lost my left ear hearing for a month-, I started having problems such as very intense occipital headaches for which I had to go to the emergency room to receive treatment. There they referred me the first time to a neurologist. He saw something abnormal on the scan, hiperreflexia in legs and myokymias in the eyes, and he asked me if I had had these movements in other parts of the body on a regular basis. This is how I realized that indeed, I had fasciculations all over my body. At first more isolated, then they became generalized and more habitual, sometimes some persist for weeks in a muscle group, and there is almost always a small continuous movement in my legs that is not always seen, but it shows. This at first was without weakness, so I didn't worry too much. The neurologist then asked for MRI of the brain, which showed "small foci of gliosis in the subcortical region of the bilateral parietal frontal lobe, of microvascular origin." Also cervical resonance, which only showed rectification of the lordosis, but without myelodradicular involvement. He concluded that they were tension headaches and prescribed physical therapy. I did, and I got better from the headaches -persist a basic pain, but not the terrifying one-.
But son -september 2019- I started to notice weakness in my left arm. At first it was a strange feeling in the little and ring fingers and heaviness of the forearm, where I lost a little force against gravity, it is as if everything I do with that arm was done with a weight hanging from it, and objectively it is less muscular than the right.
Almost at the same time my voice began to change, until I was unrecognizable, and I had trouble swallowing liquid or thick things like yogurt. I had several laryngeal spasms that scared me for long seconds.
I visited the neurologist again, and this time after seeing the symptoms and fasciculations and hyperreflexia he referred me to neuromuscular. The neuromuscular specialist found in the examination "symmetric hyperreflexia, which slightly lifted the palate, 4/5 strength in the left arm and extensors of the fingers of the left hand." He literally said "there is a motor neuron problem." And ordered an urgent EMG. The next day, October 31, they performed a full EMG that was normal. The neurologist then told me that she should come back in 3 months to be checked. The world fell on me, because with a normal EMG she couldn't tell me a diagnosis of ALS, but she saw things on the examination that made her assure that it was the motor neuron. I was very confused.
During those months of waiting I looked for another explanation to some of my symptoms. I went to the otolaryngologist, who told me that he had pharyngo-laryngeal reflux and the larynx very affected by it, and said that according to him that justified the voice problems and dysphagia. A gastroscopy ruled out other problems. Seemed more like a motility problem. He gave me esomeprazole and very slowly I recovered my voice -not entirely normal- and normal swallowing, although it is not complete, there is always a kind of mucus in my throat.
In February I returned to the neuromuscular specialist. My symptoms were the same - except for the improved voice and dysphagia-. She explored me again, and as she had not advanced in 3 months - although the left arm weakness and fasciculations and hyperreflexia were still there - she said that it surely would not be the motor neuron. He told me to seek rehabilitation for the arm.
But the covid pandemic came and I couldn't start. I did this recently, but I really don't have good results. Fasciculations persist. The weakness of the left arm reaches to the neck, but I notice it especially in the forearm, more intense than before. I cannot make the same force with that arm as with the other and in certain positions I tremble and tire.
At the same time, I notice a lot of tension in my legs, which are even too strong for the little exercise I do. And my left hand and arm have lost muscle.
I did a recent test and Antinuclear Antibodies (ANA) were also high in 1: 320 homogeneous pattern. They are the only ones, along with the Anti TPO, that I have high. I have folic acid and iron a little low almost always, I am taking supplements but not noticing clinical improvement, and celiac tests are negative.
I am very worried because the arm responds to me worse and worse, now with tension in the palm of the hand and discomfort at the elbow too, and now getting an appointment with a specialist is more difficult. Also, I don't really know if I should see a neuromuscular or perhaps another specialist again. I also wanted your opinion on the EMG, because I have read on your website that there is no EMG too early, but I have signs of the first motor neuron that made a specialist suspicious, and I do not know if I can be calm or look for another EMG of discard or confirmation . Or maybe there is a doctor here who can guide me to another pathology.
Attached the emg for October, is in Spanish but the summary says that “there is no significant neuromuscular involvement”.
Sorry the post length. And I appreciate your opinions and help in advance.
Than you very much.
First I will say that I have Hashimoto's Thyroiditis, with the hormones controlled but with the Anti TPO always elevated - usually at 500, now they are more than 1,000-.
In April- May 2019-, after a viral process -for which I lost my left ear hearing for a month-, I started having problems such as very intense occipital headaches for which I had to go to the emergency room to receive treatment. There they referred me the first time to a neurologist. He saw something abnormal on the scan, hiperreflexia in legs and myokymias in the eyes, and he asked me if I had had these movements in other parts of the body on a regular basis. This is how I realized that indeed, I had fasciculations all over my body. At first more isolated, then they became generalized and more habitual, sometimes some persist for weeks in a muscle group, and there is almost always a small continuous movement in my legs that is not always seen, but it shows. This at first was without weakness, so I didn't worry too much. The neurologist then asked for MRI of the brain, which showed "small foci of gliosis in the subcortical region of the bilateral parietal frontal lobe, of microvascular origin." Also cervical resonance, which only showed rectification of the lordosis, but without myelodradicular involvement. He concluded that they were tension headaches and prescribed physical therapy. I did, and I got better from the headaches -persist a basic pain, but not the terrifying one-.
But son -september 2019- I started to notice weakness in my left arm. At first it was a strange feeling in the little and ring fingers and heaviness of the forearm, where I lost a little force against gravity, it is as if everything I do with that arm was done with a weight hanging from it, and objectively it is less muscular than the right.
Almost at the same time my voice began to change, until I was unrecognizable, and I had trouble swallowing liquid or thick things like yogurt. I had several laryngeal spasms that scared me for long seconds.
I visited the neurologist again, and this time after seeing the symptoms and fasciculations and hyperreflexia he referred me to neuromuscular. The neuromuscular specialist found in the examination "symmetric hyperreflexia, which slightly lifted the palate, 4/5 strength in the left arm and extensors of the fingers of the left hand." He literally said "there is a motor neuron problem." And ordered an urgent EMG. The next day, October 31, they performed a full EMG that was normal. The neurologist then told me that she should come back in 3 months to be checked. The world fell on me, because with a normal EMG she couldn't tell me a diagnosis of ALS, but she saw things on the examination that made her assure that it was the motor neuron. I was very confused.
During those months of waiting I looked for another explanation to some of my symptoms. I went to the otolaryngologist, who told me that he had pharyngo-laryngeal reflux and the larynx very affected by it, and said that according to him that justified the voice problems and dysphagia. A gastroscopy ruled out other problems. Seemed more like a motility problem. He gave me esomeprazole and very slowly I recovered my voice -not entirely normal- and normal swallowing, although it is not complete, there is always a kind of mucus in my throat.
In February I returned to the neuromuscular specialist. My symptoms were the same - except for the improved voice and dysphagia-. She explored me again, and as she had not advanced in 3 months - although the left arm weakness and fasciculations and hyperreflexia were still there - she said that it surely would not be the motor neuron. He told me to seek rehabilitation for the arm.
But the covid pandemic came and I couldn't start. I did this recently, but I really don't have good results. Fasciculations persist. The weakness of the left arm reaches to the neck, but I notice it especially in the forearm, more intense than before. I cannot make the same force with that arm as with the other and in certain positions I tremble and tire.
At the same time, I notice a lot of tension in my legs, which are even too strong for the little exercise I do. And my left hand and arm have lost muscle.
I did a recent test and Antinuclear Antibodies (ANA) were also high in 1: 320 homogeneous pattern. They are the only ones, along with the Anti TPO, that I have high. I have folic acid and iron a little low almost always, I am taking supplements but not noticing clinical improvement, and celiac tests are negative.
I am very worried because the arm responds to me worse and worse, now with tension in the palm of the hand and discomfort at the elbow too, and now getting an appointment with a specialist is more difficult. Also, I don't really know if I should see a neuromuscular or perhaps another specialist again. I also wanted your opinion on the EMG, because I have read on your website that there is no EMG too early, but I have signs of the first motor neuron that made a specialist suspicious, and I do not know if I can be calm or look for another EMG of discard or confirmation . Or maybe there is a doctor here who can guide me to another pathology.
Attached the emg for October, is in Spanish but the summary says that “there is no significant neuromuscular involvement”.
Sorry the post length. And I appreciate your opinions and help in advance.
Than you very much.