New symptoms
- Thread starter qualitybabe823
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qualitybabe823
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Thank you
Thank you for the kind words of encouragement. It is hard to keep it off my mind, and my job is asking questions about what I can physically do and they want answers from my doctors, which makes it much worse. I will update when I return.
Thank you for the kind words of encouragement. It is hard to keep it off my mind, and my job is asking questions about what I can physically do and they want answers from my doctors, which makes it much worse. I will update when I return.
qualitybabe823
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Mayo Clinic Results
Well, I went to Mayo clinic, I think it's the best thing I've ever done. They were very thorough. I had 5 days of intense testing. Multiple EMG's, Nerve Conduction Studies, Autonomic testing. They pulled my father's records, he had ALS, but they do not believe that it was a genetic form. They tested me for genetics, and all checked out fine. My issues are not related to ALS, but rather to balance, motor skills and sensory perception. (spacial, how I relate to what surrounds me) THese are all things controlled by the cerebellum part of the brain. My neurologist thinks that there is something that could be going on in that part of my brain. He tested me extensively for cancer, thinking that maybe I had cancer somewhere that traveled to that part of my brain. All tests came up clear, which I was elated with! They did more autonomic testing and this time, I showed improvements, my swallow is almost fully recovered, my sweat patterns are back to normal. Very good news. Right now I am diagnosed with Small Fiber Nerve Neuropathy mainly in my hands and feet. This is normally seen with people with diabetes. I am not diabetic, however, my blood sugar fasting was 126. The doctor feels if I dropped 20lbs, this may alleviate these issues. He feels also that I may have had a autoimmune disorder reacting to some virus that I may have picked up. My immune system may have started to attack my body and it may be on the mends. In the meantime, he is recommending a brain scan, concentrating on the cerebellum part of my brain. He feels that I may have lesions, or a tumor that may be causing issues. However, he feels if this is the case, that it would not be cancer after all the testing they have done. It would be something they could treat, either with surgery or medication. So this coming week, I will be going in for the brain scan, I am having it done at home, where I live and they will send the films to Mayo and my doctors there will review them and let me know what the next steps are. SO for now, I consider this fantastic news, whatever it is, my life is not ending and for the first time in 3 years, I am focusing on the positive and not the negative. Thank you to everyone for the support I have recieved, you will never know how much it has meant to know there are people out there going through similar issues and dealing with them. I will update when I know more.
Well, I went to Mayo clinic, I think it's the best thing I've ever done. They were very thorough. I had 5 days of intense testing. Multiple EMG's, Nerve Conduction Studies, Autonomic testing. They pulled my father's records, he had ALS, but they do not believe that it was a genetic form. They tested me for genetics, and all checked out fine. My issues are not related to ALS, but rather to balance, motor skills and sensory perception. (spacial, how I relate to what surrounds me) THese are all things controlled by the cerebellum part of the brain. My neurologist thinks that there is something that could be going on in that part of my brain. He tested me extensively for cancer, thinking that maybe I had cancer somewhere that traveled to that part of my brain. All tests came up clear, which I was elated with! They did more autonomic testing and this time, I showed improvements, my swallow is almost fully recovered, my sweat patterns are back to normal. Very good news. Right now I am diagnosed with Small Fiber Nerve Neuropathy mainly in my hands and feet. This is normally seen with people with diabetes. I am not diabetic, however, my blood sugar fasting was 126. The doctor feels if I dropped 20lbs, this may alleviate these issues. He feels also that I may have had a autoimmune disorder reacting to some virus that I may have picked up. My immune system may have started to attack my body and it may be on the mends. In the meantime, he is recommending a brain scan, concentrating on the cerebellum part of my brain. He feels that I may have lesions, or a tumor that may be causing issues. However, he feels if this is the case, that it would not be cancer after all the testing they have done. It would be something they could treat, either with surgery or medication. So this coming week, I will be going in for the brain scan, I am having it done at home, where I live and they will send the films to Mayo and my doctors there will review them and let me know what the next steps are. SO for now, I consider this fantastic news, whatever it is, my life is not ending and for the first time in 3 years, I am focusing on the positive and not the negative. Thank you to everyone for the support I have recieved, you will never know how much it has meant to know there are people out there going through similar issues and dealing with them. I will update when I know more.
AngelManFL
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Awesome!
That is so amazing - I am so happy for you! I'll be going to back to the Mayo for the third time and I praying for the same news...
That is so amazing - I am so happy for you! I'll be going to back to the Mayo for the third time and I praying for the same news...
qualitybabe823
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Don't give up
Angelman, it has taken over 3 years for me to get this great news, don't give up hope, without there is nothing. My prayers are with you for good news!
Angelman, it has taken over 3 years for me to get this great news, don't give up hope, without there is nothing. My prayers are with you for good news!
zachnnicksmom
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Could this be ALS?
Hi everyone, I am a very scared 41 yr old mother of 2! About a month ago I started noticing a very slight tightness in my L calf muscle. Took some Aleve and it got a tad better. 2 days later I was walking up some steps and it felt like someone shot me in the calf. As long as I didn't walk on it I was fine, and then if I walked very flatly (not at all on my toes) it didn't hurt. It would start feeling better and then I'd move the wrong way and BOOM it would happen again. Then my calf muscle started twitching and I quickly started noticing the twitches all over my body soon thereafter. Well, the calf feels 100% better since wearing shoes with a tiny lift in the heel area but the twitches have remained with me. Now I feel them predominantly in my calfs and thighs and arches of my feet, and they have turned to more of a feeling like they are starting to cramp but just ever so slightly and then they never do. I rubbed my upper lip in the middle of the night and my arm twitched from moving it and then my face twitched from where I rubbed it. These are my only symptoms now..no weakness whatsoever, no burning, in fact I walk briskly for 30 minutes every day. Could someone please help me ease my mind? Thanks for any insight into this you can share with me.
Hi everyone, I am a very scared 41 yr old mother of 2! About a month ago I started noticing a very slight tightness in my L calf muscle. Took some Aleve and it got a tad better. 2 days later I was walking up some steps and it felt like someone shot me in the calf. As long as I didn't walk on it I was fine, and then if I walked very flatly (not at all on my toes) it didn't hurt. It would start feeling better and then I'd move the wrong way and BOOM it would happen again. Then my calf muscle started twitching and I quickly started noticing the twitches all over my body soon thereafter. Well, the calf feels 100% better since wearing shoes with a tiny lift in the heel area but the twitches have remained with me. Now I feel them predominantly in my calfs and thighs and arches of my feet, and they have turned to more of a feeling like they are starting to cramp but just ever so slightly and then they never do. I rubbed my upper lip in the middle of the night and my arm twitched from moving it and then my face twitched from where I rubbed it. These are my only symptoms now..no weakness whatsoever, no burning, in fact I walk briskly for 30 minutes every day. Could someone please help me ease my mind? Thanks for any insight into this you can share with me.
brendapals
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hello zachnnicks mom,
Have you been to your family doctor yet? Please don't rush yourself into thinking you have ALS, there are numerous reasons you could have "twitches".
You have found the best place in the world for support and I'm sure you will learn a lot, but please, please, go to your family doctor for an evaluation, we certainly don't replace doctors on here,
Respectfully,
brenda
Have you been to your family doctor yet? Please don't rush yourself into thinking you have ALS, there are numerous reasons you could have "twitches".
You have found the best place in the world for support and I'm sure you will learn a lot, but please, please, go to your family doctor for an evaluation, we certainly don't replace doctors on here,
Respectfully,
brenda
zachnnicksmom
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Thanks for such a quick reply Brenda! No, I haven't been to the doctor. i know I tend to think a headache is a brain tumor and that whatever symptom I have HAS to be the worst thing I can dig up on the internet. So I just stumbled on this website and everyone seemed so knowledgable I was really hoping someone could say, Girl..calm down..doesn't sound like ALS...sounds like a bad case of the nerves after pulling your calf muscle! Or something like that...hehe! Then I could calm down and maybe the twitching would stop. That could save me a lot of money too, ya know? 
Anyway, I just get really scared so I was hoping for a little reasurance.
Anyway, I just get really scared so I was hoping for a little reasurance.I agree. There are so many other syndromes that mimic ALS. Go to your doctor, have some blood work drawn, getting your b12 level, thyroid check, diabetes test, etc. and see what your doctor thinks. They will usually refer you to a neurologist if they cannot figure it out.
Stay in touch and best of luck,
jennifer
also 41 and going through testing
Stay in touch and best of luck,
jennifer
also 41 and going through testing
brendapals
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I don't suppose by any chance you are a nurse, are you?
typically the nurses I work with are the first to say a little left arm pain is a heart attack, the headache is the tumor, or the cough is cancer.
Yes, dear, relax, enjoy your boys
talk soon,
brenda
typically the nurses I work with are the first to say a little left arm pain is a heart attack, the headache is the tumor, or the cough is cancer.
Yes, dear, relax, enjoy your boys
talk soon,
brenda
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