Hi all, I am new here and very scared. Two years ago, I had weakness and pain in my left hand and arm. Within months, I started feeling strange feelings in other arm, hand and both feet. The muscles in my feet and hands are getting really stiff..I used to type for a living. Now it is very hard to do. This is progressing so fast...I mean the cramping and weakness and rigidity. You cannot explain it to anyone. I also have very, very cold hands and feet to the point where I have to put electric booties and mitts on several times a day. They feel frostbit and are very painful. I now have pain in my ankles and wrists and I can feel it moving upward. It is painful even to make a sandwich. I am very depressed. I want to the Mayo for a consult a month ago, but due my husband's schedule, I cannot have the tests ordered until the middle of January. I don't feel like that in the initial consult that I was taken real seriously. I was having a better day that day and tried to keep it together....maybe too much. She commented on me being on too many meds....like I did not need them. I told her that my doctor gave me a handicapped permit and I think she was really taken back...Like I didn't need one. There are days when my feet are so frozen and rigid that it is hard for me to walk. She did not see that. I have known since the beginning that something really bad is happening to me and NOBODY understands. I was told by the neuro at the very beginning of this that it was all in my head and it would for sure go away. I knew that it was not going away. She tried three times to get me to the Mayo and fnally got in. When I go back, I will see an internist and have several tests. All my tests though seem to come out normal. Then I will see her at the end. When I real the ALS symptoms, they seem a lot like mine. I am so scared. My body is freezing up on me and there is nothing I can do about it. I know it my heart that there will come a day when I cannot type. I am so depressed over loss of my life. I have had really bad pain right from the beginning....like a crushing bone pain in my fingers...then went to my toes. I feel like my feet are in a vice and being crushed all the time. They say don't diagnose yourself on the internet, but hey we are the only ones that know what is going on in our bodies. Does ALS present with pain? I am on a 50 mcg fentanyl patch, but I still have pain...I do not know how much pain it is killing. The doc at the Mayo mentioned going to their pain clinic, but I know they just try to get you off meds. What if the patch is killing a lot of pain? What if I don't want to do that? I am also sweating excessively at night, really bad. I have waves of my heart racing and heat during the day...hard to explain. Can anybody relate to any of this. Does anybody have feet and hands that freeze so cold you cannot stand it and sometimes feel frostbit...even at times, they are burning hot and cold at the same time? How do I get these doctors to listen to me?

Hi treehealy and welcome to Neuro Talk. I am so sorry to read of your pain but you have come to the right place for information and support. Here is a forum that might be of interest to you...http://neurotalk.psychcentral.com/forum20.html

and this is another one...http://neurotalk.psychcentral.com/forum10.html

Please feel free to post on either or any forum here.

treehealy,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi treehealy,

Just wondering if you had any tests done yet, and what you found out?

Which Mayo Clinic did you go to, Florida, Arizona or Minnesota? I hope the docs treated you better this time.

Sending thoughts your way.