thyroid?
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hopingforcure
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Hi I do not want to muddy the water's but why not...I often read that Thyroid problems and such mimic als.. Maybe some of this could actually help your symptoms.. Sounds crazy but who knows you could actually feel an improvement after the surgery.. We all know they sure do not understand this disease.. My thoughts are with you..
Marjorie R. Wilcox
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I'd like to comment on the mention of AlS and what might happen with progression if you have surgery.
Rick was well into his symptoms of ALS and we knew back then that he had a motor neuron disease, but it wasn't named yet, when he was involved in an explosion that almost amputated his right leg from the knee down.
He had five surgeries the first week and a sixth one about 6 weeks later... a major bone grafting and resituation of muscles that were left. He was put into a fixator for nine months while hopping on one foot and waiting for the bone grafting to take. He had skin grafts to close the wound, and had bone tissue removed (by a scope) from the inside of his pelvis for the surgery.
The surgeries didn't make any difference in his ALS condition. In fact, we felt blessed that he had very little pain during the whole process of surgeries and healing. That was because of the ALS. He healed just fine... can walk without any help and any limp even. He doesn't have feeling in the leg, but it works.
Doctors couldn't believe he didn't need the pain meds they kept prescribing. They couldn't believe how fast he healed with ALS and the TypeII diabetes too.
I wouldn't let surgery worry me if I were any of you. If you need it, go for it.
Rick was well into his symptoms of ALS and we knew back then that he had a motor neuron disease, but it wasn't named yet, when he was involved in an explosion that almost amputated his right leg from the knee down.
He had five surgeries the first week and a sixth one about 6 weeks later... a major bone grafting and resituation of muscles that were left. He was put into a fixator for nine months while hopping on one foot and waiting for the bone grafting to take. He had skin grafts to close the wound, and had bone tissue removed (by a scope) from the inside of his pelvis for the surgery.
The surgeries didn't make any difference in his ALS condition. In fact, we felt blessed that he had very little pain during the whole process of surgeries and healing. That was because of the ALS. He healed just fine... can walk without any help and any limp even. He doesn't have feeling in the leg, but it works.
Doctors couldn't believe he didn't need the pain meds they kept prescribing. They couldn't believe how fast he healed with ALS and the TypeII diabetes too.
I wouldn't let surgery worry me if I were any of you. If you need it, go for it.
sukilou
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surgery update
Well, it's over with and I'm home. The surgery went very well, and I was only in the hospital for 2 days. I have very little discomfort and I seem to be at baseline as far as ALS is concerned.
Now here is the interesting thing. The surgeon removed my last parathyroid gland from the tumor and autotransplanted it into the muscle on the other side of my neck. The tumor consisted of scar tissue from my '91 surgery and some thyroid tissue, and has been sent off to the pathology lab for biopsy. I don't have those results yet.
The parathyroid glands regulate blood calcium level, and mine is low according to lab work done in the hospital. I have been on calcium supplements, magnesium and Vit D for the last year, so I don't know if the low blood calcium is due to the surgery or if it is something that I have had for awhile. My blood calcium was not checked previous to the surgery as far as I know. Some of the symptoms associated with low blood calcium are : tetany, hyper reflexes, muscle pain, spasms, contractures and even random twitching. What I find curious is that those are also upper motor neuron symptoms (with the exception of twitches) that my ALS neuro has observed, and now I'm wondering about the low blood calcium effects vs ALS symptoms.
I'm seeing my ALS neuro this Wed and will be asking all about this, and also if she did a blood calcium test as part of my workup, and how long before my calcium levels will be normal.
Any info you all may have will be appreciated. Thanks
Well, it's over with and I'm home. The surgery went very well, and I was only in the hospital for 2 days. I have very little discomfort and I seem to be at baseline as far as ALS is concerned.
Now here is the interesting thing. The surgeon removed my last parathyroid gland from the tumor and autotransplanted it into the muscle on the other side of my neck. The tumor consisted of scar tissue from my '91 surgery and some thyroid tissue, and has been sent off to the pathology lab for biopsy. I don't have those results yet.
The parathyroid glands regulate blood calcium level, and mine is low according to lab work done in the hospital. I have been on calcium supplements, magnesium and Vit D for the last year, so I don't know if the low blood calcium is due to the surgery or if it is something that I have had for awhile. My blood calcium was not checked previous to the surgery as far as I know. Some of the symptoms associated with low blood calcium are : tetany, hyper reflexes, muscle pain, spasms, contractures and even random twitching. What I find curious is that those are also upper motor neuron symptoms (with the exception of twitches) that my ALS neuro has observed, and now I'm wondering about the low blood calcium effects vs ALS symptoms.
I'm seeing my ALS neuro this Wed and will be asking all about this, and also if she did a blood calcium test as part of my workup, and how long before my calcium levels will be normal.
Any info you all may have will be appreciated. Thanks
crystalkk
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Lonna,
I'm happy that everything went well with the surgery...... I would definately ask about the low calcium... parathyroid disease is one of the things that needs to be ruled out..... Are your EMG'S normal?
I'm happy that everything went well with the surgery...... I would definately ask about the low calcium... parathyroid disease is one of the things that needs to be ruled out..... Are your EMG'S normal?
sukilou
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I have had 2 EMGS which showed chronic denervation and reinnervation in three areas so I don't doubt my diagnosed of ALS, but find the whole subject of low calcium curious. My legs are the weakest part of me, and I can only walk with the use of a walker.
sukilou
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neuro visit today
I saw Dr. Goslin, my als neuro, today. She is very pleased with how I look to her with very little progression in the last 3 mos. I asked about my low blood calcium level and upper motor neuron symptoms. She said that my calcium level was at a normal level when she did my workup last Nov and that the low level now is the result of my surgery, and my endocrinologist will be following that with me. She also said that the low calcium would not be affecting the spasticity in my legs that I have but rather would make me feel tired. And I am tired, but it's only been 1 week since surgery so I need to cut myself some slack. So I'm watching the Blazer game tonite and going to bed early!
I saw Dr. Goslin, my als neuro, today. She is very pleased with how I look to her with very little progression in the last 3 mos. I asked about my low blood calcium level and upper motor neuron symptoms. She said that my calcium level was at a normal level when she did my workup last Nov and that the low level now is the result of my surgery, and my endocrinologist will be following that with me. She also said that the low calcium would not be affecting the spasticity in my legs that I have but rather would make me feel tired. And I am tired, but it's only been 1 week since surgery so I need to cut myself some slack. So I'm watching the Blazer game tonite and going to bed early!
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