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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. :)
 
Lilacs, sorry you are here, but you will receive understanding and support. You are still at the beginning of trying to make sense of what makes no sense. Try to remember that you have today, and none of us know our future! So enjoy your family and all the today's you still have . And as others will tell you,get a second opinion for your own peace of mind. Hugs to you.
 
Welcome. I am very sorry you have to join us. You are of course in deep shock which is normal. A second opinion down the road as well,especially as the diagnosis is not a slam dunk after all this time. I hope if it is confirmed it means you are a slow progressor. Sounds like it. Take these couple of weeks before your follow up to absorb things and then start to plan both the practicalities and to make many many memories.
 
Welcome to Heartbreak Hotel, and sorry you have reason to be here.
 
lets hope that it's not. may you have mine more years.
 
Thank you all for your kindness and suggestions...I will try my best to do them all. I hope that we all will beat this thing!
 
Sorry you need to be here but this is a great group. They have lots of knowledge, will offer support and a shoulder to cry on, a ear to listen when you need to rant , and someone to help you celebrate your successes along this path. This is an emotional and difficult journey but with the support of people who u derstand, its a little bit easier. :)
 
I go to Barrow's and they are terrific. Being a part of the MDA family it helps with costs and being underwritten by the Fulton family it is nice, but the best part about it is the knowledge & compassion of the doctors and staff.

If you want to PM me I would be happy to give you my numbers. If you don't that is ok too. I too have been truly blessed by an incredible spouse. Karen is truly a saint and I hurt for what she is going thru and will go thru. We only have 1 left at home and he will be moving when he graduates from ASU this coming spring. We live on the complete opposite side of town but maybe one of the clinic days we can meet?

Praying for you and all of our fellow ALS families. If you haven't gone I would suggest going to the ALSA support group. They are a Godsend. They have 1 on the east side and 1 on the west side. There is also a caregivers only support group that people speak very highly about, being a PALS I can't go to that, but we are arranging a carpool with a few CALS for next week.

Doug
 
Prayers going up for you Lilac
 
I'm sorry for all you have been through. I hope your upcoming doctor visits go well. This forum has helped me tremendously and know that you will get lots of good info and support here, also.
 
Hi Donna -- ALS sucks (as does my typing :)), but it is a beginning, not an ending.

More on this later ... some of my stuff in blogs :)
 
Howdy Doug, I am Gerard, Donna's (lilacs) husband, I think it would be helpful for us and hopefully for you too to get together and talk about this, I'm lost, don't know what to do, or where to turn, or when to do it. I will PM you my number as soon as I figure out how to do it. wow this is tough. take care my new friend.
 
Fishfin, you have to make a certain number of posts before you can pm, think it's around 25 but not sure. You can probably post a visitor message on his profile page with your email and then from there exchange numbers or just wait until you can do pm's. Note - visitor messages are public to anyone that looks at his profile
 
Max ALS ls like a reversal of Churchills famous saying in WW2. Its not the end of the beginning, but the beginning of the end.
 
>Max ALS ls like a reversal of Churchills famous saying in WW2. Its not the end of the beginning, but the beginning of the end.

how true!
 
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