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llwlpn

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Joined
Feb 16, 2011
Messages
63
Reason
PALS
Diagnosis
07/2011
Country
Uni
State
AZ
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Hi Everyone ! My name is Laura and I have been lurking here off and on since January. I was diagnosed with ALS yesterday at the Mayo Clinic in Arizona. I didn't want to post until I had a diagnosis and I was trying not to panic. I am also a licensed practical nurse.

Last summer I started having weakness and loss of fine motor skills in my right hand. At first I thought that I just crocheted too much or somehow injured it. I could still work so I didn't really worry about*it. Then since December it has gotten much worse. I have lost movement and a couple of my fingers are starting to curl. I also started getting twitching and my whole arm is weak. I broke my ankle at the beginning of January and was seeing an orthopedist. I showed him my hand and he ordered an Emg. I didn't realize it until he pointed out that I also had atrophy. I made the mistake of researching emg online and came up with ALS. However, I thought that if I had ALS they would look at the emg and diagnose me (yes I was naive). That didn't happen. My emg was abnormal but they didn't say ALS so I thought I was off the hook. I quit worrying about it and kept trying to figure out what was going on. I ended up having an MRI of my cervical neck and my brain. I also saw a neurosurgeon and a neurologist, both who said there was nothing that could be done but they didn't know what the problem was.

I decided that I owed it to myself and my family to figure out what was going on. I made an appointment at the Mayo Clinic in Arizona. They sent me an itinerary and I was scheduled to see a neurologist, have an emg, and a pulmonary function test. Being scheduled for the pft made me think that they were thinking ALS. I saw Dr. Ross on Tuesday and after he examined me he told me that he thought I had ALS. I had a bunch of bloodwork done also. The first emg was just of my arm/upper back. The new emg was of my arm, leg, and back. There were abnormalities in all areas. I also have upper motor neuron symptoms all over. So he gave me the diagnosis yesterday. It's not what I wanted to hear but at least I know what's going on.

I am 46, married and have 2 kids. My kids are 21 and 12.
 
Hi Laura,
Sorry about the news. Your at the right place. There is so many nice people and help at this site. Most of my questions and concerns were answered here.
It's scary but get with ALSA and the Social Worker to get the ball rolling. There is quite a few drug trials you might want to check into.
I have an 11 year old daughter, wonderful husband and was a Speech Therapist. I was diagnosed last month. I only have about 50% of my voice left (that's where it started) and my left hand is is affected.
Take care,
Susan
 
llwlpn,

Welcome to the forum! I'm very sorry to hear of your diagnosis but so glad you found this site! I hope we can be of tremendous encouragement to you!
 
Sorry about your diagnosis! But, welcome!

My husband was diagnosed when he was 47, but had symptoms way before that. Our son will be 11 soon.

Good luck to you and your family!
 
Hey there! So sorry to hear of your diagnosis. It's not fair!
My husband (34 next week) was diagnosed in march 2010. His symptoms began we slurred speech in december 2009. We have been mArried 8 years and have three sons: 6 on Sunday, 5 & 3 in September.
This site is so incredibly informative and even more so, supportive.
May you find some peace, Ernesta
 
Hi Laura. So sorry for your diagnosed.
But here you can find support and ear to listen or maybe you need to let off some steam go ahead. We are all here for you. Loads of loving caring people here to help in anywhy they can. ((Hugs))
 
Hey Laura! I was recently diagnosed a couple weeks ago as well. I had no idea my footdrop was going to tunr into leg weakness and an emg to show I was weak in both legs and arms. Crazy how you sometimes cannot tell until the neurologist tells you. If you need to chat, I am new to this site and might be feeling some of the things you are. I am only 23 so it hurt prettyhard to hear the news (not that it is easy at any age). From what I hear this is a great place to be with very loving people that understand. Hope you have a wonderful weekend. :)
 
Hi Laura,
So sorry to hear of the diagnosis. It is hard to deal with...esp. in the beginning...I have been diagnosed couple months and I still have to remind myself to slow down before I am forcefully slowed down by my body! It is a great support group here for you when you need advice, to vent, or just have friends who are with ya on this same journey. Give yourself a chance to grieve and accept. Don't be too hard on yourself...hope you feel as welcome here as I have been welcomed here in my time. :)
 
Aloha Laura,
We have couple things in common...age,married and 2 kids.lol oh and ALS :( Sorry to see you here but as everyone said... this is the area you want for support, venting and almost any information you may need.... I too got referred to Mayo Clinic in Minnesota... ( it was pretty cold for a hawaiian like me) but well worth it, thats where I got reconfirmed on ALS... I started with pain in my lower back and the rest is history... I have a 19 yr old son and a 17yr old daughter. My daughter still lives at home and is a big help for us... she my back up driver.lol... Well, its good to see you here again, take care and God Bless... Aloha, yo
 
Thank you everyone for your warm welcome. This week has been a bit overwhelming. I'm glad to finally have answers but wish they were different ones. I think one of the hardest things will be that I've always been the one to take care of others and now I'm the one who's going to need taken care of. I also need to learn how to plan the best use of my energy (spoons). I've been doing way to much on days I feel good and then I pay for it.

I am hopefully going to enroll in a research study of a new medication at the mayo clinic. I think it's NP 001 but I could be wrong. The only thing is I'm going to start Rilutek but I have to be on it for 4 weeks first. The pharmacy had to order it and hopefully it will get here quickly.
 
Hi Laura, sorry you have to be here, welcome.
 
Welcome to our family..sorry about your diagnosis, but you will have support and info here that will help you.
 
Morning Laura,So sorry about your diagnosed also,praying you have a very slow progression.---------------Hugs Ken
 
Hello, Laura: Sorry for your diagnosis. The ALS Association was a great help to me when I was first diagnosed. They are a great source of information and have some great printed material that you will find available. Best Wishes./Frank
 
Welcome Laura to the ALS Forum Family,wish you had no reason to be here, but since you do, it is a fantastic site to get info and support.
thanks so much for sharing a bit of your story. You can post pictures of your family on your home site. Hope you find your way around here. If you have any questions just ask, you'll get answers. ((HUGS))
 
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