Still in shock

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sunewun

Active member
Joined
Jun 22, 2012
Messages
81
Reason
PALS
Diagnosis
06/2012
Country
US
State
TENNESSEE
City
Camden
sunewun
I am just trying to figure out how to post to the different forums. I was just diagnosed....at least I think I am diagnosed. The Dr who did the emg said he thought I had als, though it was not totally conclusive and the Dr. I saw yesterday said he was almost 100 percent certain that it was als and is now sending me to the als specialists in Vandy. Im kind of stunned and still trying to tell myself that it was overdoses of statins or anything else but this. He (the Dr.) said it wasnt statins but how can he tell since I have only had normal blood tests and the cpk test was flubbed by the lab. I have drop foot on my left leg and both legs are kinda weak. Everything else seems to be working ok so far though I get tired really fast. I am not usually a complainer so sorry if this sounds like a whine...Just trying to get though the shock.
 
You're not complaining. You're expressing how you feel and there's nothing wrong with that. This is a good place to post and talk. Sorry you had to be here though. Yasmin.
 
Sorry about the possible ALS diagnoses. I also went to a local Neuro who then referred me to Vandy. I saw Dr Peter Donofrio at Vandy. He examined me (strength tests, reflexes, walking heel to toe, walking on tip toe, looking into my mouth, etc.) then sent me to get blood drawn. Then I had another appt about 3 weeks later for an EMG & NCV. When EMG & NCV were finished he went over the results of the blood tests. Since there is no official ALS test that would come up positive or negative my blood was tested to rule out other things that mimic ALS. My EMG was dirty in 3 limbs (if EMG is dirty in 3 limbs they don't bother testing the 4th). Dr D then told me about the drug Rilutek and mentioned the ALS clinic Vandy has. IF you do have ALS sign up for the clinic. I was in shock/denial when I left there and didn't sign up and it has taken a bit of calling and waiting to finally get an appointment to go to the Vandy clinic.
This website is FANTASTIC and the people who answer your questions are SUPER FANTASTIC!
We are here for you so don't ever think you are alone. We are just a click away! :)
 
Thank you for hearing me...
 
All the tests have been done at Vandy. The neuro dr I last saw said the tests I have taken verify the diagnosis but he said that it takes months and more tests to be totally certain. He has referred me to the als clinic and to another specialist who deals primarily with als. Waiting for them to call and set it up. Thank you so much for the replies. It helps to know there are others who understand what I am going through. I wish no one had to deal with this though. I wish I could understand why I keep finding tears running down my cheeks even when I am not even thinking of crying. Wierd
 
You will go through MANY emotions. It takes time for all of this to really sink in. For me the crying has gotten a whole lot better. I NEVER thought I would laugh again but I do. :) Don't be hard on yourself. Enjoy each day as it comes and try not to think about tomorrow.
 
We are here for you. I'm sorry to meet you here but you found the best forum. You can question, rant and rave. Live each day to the fullest.
 
Keep your head up! My husband has been walking around with right drop foot for more than a year and half......and he is still walking and still working! Don't let the diagnosis control your every thought, live each day like it's a gift, enjoy the little things and try not to get overwhelmed. Get in touch with you local ALS chapter, get an appointment at the ALS clinic as soon as possible. I'm so sorry you have to be here, but I will keep you in my prayers.
Jennifer
 
Hello
You've found the right place to be sure. I too am newly diagnosed. I totally understand the myriad of emotions which comes with the initial shock. I have found many answers to my questions. Moreover, I feel safe expressing my feelings and concerns here. I do share most things with those people in my life whom I love, but sometimes, it's easier to share with folks who understand it from the inside out. Sorry for your diagnoses - but happy if I can be of help to you in a small way.

Elaine
 
Sunewun,

Welcome to the family. Sorry for the reason. Ask questions. There's usually someone who's already gone through it. That's what is so great about us. We love to share the knowledge we learned along our journey. And when you're ready to explore the fun side here, meet in the middle section marked "Off Topic". And its not always off, but a great place to meet others. We have a Tea Room, a Pub, a Whine and Cheese Room and our very own Church. It has prayers, songs, happiness, and wonderful daily devotions. And its run by an absolutely fantastic group of people. When you're ready, stop by.

And once you have posted 10 times, you will get the abi lity to private message other members something on a more personal
level. Again, welcome.
 
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Thank you all. There is so much to learn and so may questions to ask.
 
I have had distal syptoms for 5 years, final diagnosis last September. Right hand is weak, walk is clumbsy , but I can still drive, walk, talk,eat and breathe. Don't let the progression of others scare you too much. Each case is different. And so glad you have Vandy. I have found my ALS clinic at the University of VA wonderful.

Ask away..we all know the terror in the first weeks after diagnosis. We will help if we can...
Hollister
 
Welcome to our forum family... as the others said, we all go through all the emotions, and every now and then I do again. About once a month I'm crying over everything it seems, and though I wish I could blame it all on PMS... it's not. Its just a new reality.

Plan ahead, but don't stop living your life. I've been diagnosed for over 2 years now, and though I'm not walking, I can still stand up, go place on my scooter or pwc, and am still working parttime both because I need to financially, but also because I like what I do (I also work out of my house)

Sign up for the clinic, and look into trials.
 
Hello Sunewun,
I am so sorry to hear about the diagnosis. I go see Dr D at Vandy on 19 July for a second opinion, but my neurologist is a wonderful doctor and unfortunately I have a lot of confidence in his diagnosis. Here is a link:
The ALS Association, Tennessee Chapter - The ALS Association Tennessee Chapter
Patty Lane is really nice. She is with the TN ALS association and she came out to my house to give me information about ALS. No charge for her come and visit you and she is really helpful. If you have not contacted them, you might wish to. Welcome to the forum........cheers.....fp
 
Thank you all. I am learning a lot from the forums. So many people have had the same problems I have, like having my knee go out a lot on the drop foot side. Turning my ankle a lot before the drop foot. I just thought i was clumsy. (which I am) Evidently that was when it was beginning. I'm still walking but wondering how long it will last. Havent fallen yet but I have been lucky to be able to grab something when my knee went out. Get tired and weak sooo quickly though. Do you think I should contact the als clinic before even another dr. says he thinks I have als or should I wait till they get my appt set up. I am still waiting for them to call me and its been a week today. Saw Dr. Sonmesturk and he is going to set me up with a Dr. Lee and refer me to the clinic.
 
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