Lilacs53
Distinguished member
- Joined
- Oct 13, 2014
- Messages
- 107
- Reason
- PALS
- Diagnosis
- 09/2014
- Country
- US
- State
- AZ
- City
- Buckeye
Hi Everyone :neutral:
Sure wish none of us had to be here, but am grateful that this place does exist for us. My name is Donna and my Neurologist told me and my oldest son on October 9th, that he believes that I have ALS. He wants to do another EMG in a few weeks to check to see if there's any improvement in my symptoms or worsening of them, before he makes a definite diagnoses. I have a sinking feeling though that he is right, but am really hoping that he's wrong.
God has blessed me with a wonderful and loving husband of 32 yrs, soon to be 33 yrs in January. He is also on this forum, but so far hasn't received his confirmation letter to join in. He is the one that talked me into joining...I was hesitant, because it's like admitting to myself that I have ALS. I think some of you will understand that. Gerard and I have three awesome kids, a daughter and grandson who lives in another state....I wish badly that they were here. Then two sons who live here in Arizona, which I am so grateful that they do. Our oldest son is living with us until he gets back on his feet and is able to get his own place again. I am really glad that he is here, he's such a big help to us. Our youngest son lives in another town not too far from us, but far enough to for me to miss him, if I don't hear from him on a daily basis....lol.
My symptoms started in January of 2013. My right ankle popped (my ankles have always popped since I was a kid) but this time it hurt a lot. The next day at work I noticed that I was limping and was in some pain. The next day Gerard and I went to Rapid City to celebrate our anniversary. That weekend my foot and leg was in a lot of pain on and off and I was limping. My leg and foot was also swollen and in inflamed. After seeing several doctors, including a few Neurologists (two from Mayo Clinic in MN and AZ) they diagnosed me with Nondiabetic lumbosacral radiculoplexus neuropathy, which is similar to Drop Foot, but with me I have several nerves that are damaged instead of just one. They both at different times recommended that I have infusions of methylprednisolone that I did have, in North Dakota and then here in Arizona. Needless to say the infusions didn't take this away or improve my condition.
I am now seeing a Neurologist at the Barrow Clinic here in AZ and he is the one that believes I have ALS. My symptoms are getting worse in that my whole right side is being effected now My foot is similar to being paralyzed (it has been for quite sometime now), I have lost muscle mass in my foot and leg. My arm and hand is showing signs of it, in that they feel weak even when resting. I tire very easily now and just don't have the energy to do the activities that I used to do. I also get cramps in my toes in both feet, and in my diaphragm (don't know if that's a symptom tho).
I'm 57 yrs old and want my life back! I want so much to be at my kids weddings and to hold more grandchildren. I want to grow old with my husband and enjoy the rest of our lives together. I don't know why God is allowing this to happen, but I know that His reasons are good ones and one day He will let me know why. I just have to keep up a good fight and try to beat this thing and have faith that through Him everything will work out. I hope that for us all.
Wow I better stop....lol...before this turns into a book. Thank you all who read this, I'm looking forward to talking to you all.
Sure wish none of us had to be here, but am grateful that this place does exist for us. My name is Donna and my Neurologist told me and my oldest son on October 9th, that he believes that I have ALS. He wants to do another EMG in a few weeks to check to see if there's any improvement in my symptoms or worsening of them, before he makes a definite diagnoses. I have a sinking feeling though that he is right, but am really hoping that he's wrong.
God has blessed me with a wonderful and loving husband of 32 yrs, soon to be 33 yrs in January. He is also on this forum, but so far hasn't received his confirmation letter to join in. He is the one that talked me into joining...I was hesitant, because it's like admitting to myself that I have ALS. I think some of you will understand that. Gerard and I have three awesome kids, a daughter and grandson who lives in another state....I wish badly that they were here. Then two sons who live here in Arizona, which I am so grateful that they do. Our oldest son is living with us until he gets back on his feet and is able to get his own place again. I am really glad that he is here, he's such a big help to us. Our youngest son lives in another town not too far from us, but far enough to for me to miss him, if I don't hear from him on a daily basis....lol.
My symptoms started in January of 2013. My right ankle popped (my ankles have always popped since I was a kid) but this time it hurt a lot. The next day at work I noticed that I was limping and was in some pain. The next day Gerard and I went to Rapid City to celebrate our anniversary. That weekend my foot and leg was in a lot of pain on and off and I was limping. My leg and foot was also swollen and in inflamed. After seeing several doctors, including a few Neurologists (two from Mayo Clinic in MN and AZ) they diagnosed me with Nondiabetic lumbosacral radiculoplexus neuropathy, which is similar to Drop Foot, but with me I have several nerves that are damaged instead of just one. They both at different times recommended that I have infusions of methylprednisolone that I did have, in North Dakota and then here in Arizona. Needless to say the infusions didn't take this away or improve my condition.
I am now seeing a Neurologist at the Barrow Clinic here in AZ and he is the one that believes I have ALS. My symptoms are getting worse in that my whole right side is being effected now My foot is similar to being paralyzed (it has been for quite sometime now), I have lost muscle mass in my foot and leg. My arm and hand is showing signs of it, in that they feel weak even when resting. I tire very easily now and just don't have the energy to do the activities that I used to do. I also get cramps in my toes in both feet, and in my diaphragm (don't know if that's a symptom tho).
I'm 57 yrs old and want my life back! I want so much to be at my kids weddings and to hold more grandchildren. I want to grow old with my husband and enjoy the rest of our lives together. I don't know why God is allowing this to happen, but I know that His reasons are good ones and one day He will let me know why. I just have to keep up a good fight and try to beat this thing and have faith that through Him everything will work out. I hope that for us all.
Wow I better stop....lol...before this turns into a book. Thank you all who read this, I'm looking forward to talking to you all.