New and an ostrich

[cynthialeopold60]

I feel that I am the poster child for ALS. Let me give you a little history that might help explain. This time last year I noticed that I was limping on the rt. leg, soon after I took a bad fall and really clobbered my head and face. Finally the discomfort got the best of me so I went to an orthopedist. Bone spur on the hip was the diagnosis. A few months later I noticed the drop foot and fatigue as well as some slurred speech. Got a referral to a neuro and after a series of MRI and a clinical exam he referred me to UCLA neuro dept. Dr. Graves examined me and didnt notice the slurred speech, but felt a EMG was i order and a recheck in 2months. I havent gone back for either one out of fear of a definitive diagnosis. I now have developed every symptom from twitching to exaggerated emotions to increasing weakness in my rt. leg, to an uncooporative tongue and nearly every other ALS symtom.

Is there anyone else that has avoided the final word and opted to play ostrich. Would there be any reason to gut it up and go back and get the formal diagnosis. Im not normally this cowardly but am frozen in fear.

Any advice and words of wisdom would be greatly appreciated. Thanks for listening!

 

[SueG]

I feel for you in your situation.
Please, do what it takes to get a diagnosis. Then, if it is ALS, you can find a good ALS clinic for coordinated care. It makes a big difference for me. Being an ostrich may wind up limiting your options.
I hope it is not. And take a loved one or friend with you!
Sue

 

[notgivnup]

Cynthia,
My best advice would be to back to the doc, have the tests needed to find out what your problem is and just maybe they can fix what ever it is. I know it sounds simple but what choice do you really have? Sit around and worry about the unknown or be proactive and deal with the problem. Great Quote "worrying does not change the future grasshopper". I feel for you I have been there done that, but there comes a time you just need to know, for you and your family. So sorry you are having to go thru all this, but get to the bottom of it, and go from there.

 

[jimmy5]

Pray, go to the doctor, and remember that no matter what, God's will be done. I hope it isn't ALS. I will pray for you tonight and ask for healing, and strength for you. There is truly nothing that can be said to take away your anxiety right now, what you need is answers at this point, and you know where you need to go for them.

 

[Alyoop]

Cynthia, The answer is obviously.....go to the doctor . Remember out of the 100s of people given EMGs for suspected ALS, very few actually have it. Most of the posters on the Do I Have ALS thread are convinced they have ALS and I can count the ones that ended up with the diagnosis on half a hand, if that. Getting an answer will help, believe me.
Best wishes
Aly

 

[LizT]

I agree. Go back. If it IS ALS, you will be needing lots of help, which you wont get without a difinitive diagnosis.
So sorry

 

[wright]

If you wait too long or don't go at all . . . and your condition is treatable (i.e. it is not ALS) and it goes untreated . . . you could very well cause yourself permanent damage. Get someone to go with you, so you have the support you need to do what everyone here sees as your only viable option. I wish you the best.

 

[Okie2]

Go to the Dr. If it is ALS, you will have options for help with dealing and handling the act of living with this disease. If it is not ALS you should be getting help to stop what every is happening. Good luck!

 

[cynthialeopold60]

Thanks to everyones advice to seek out the answer regardless of the end result. I just needed to hear it from someone who has been there and truly understands. I will call to make my appt. as soon as the holiday weekend is over. Thanks again

 

[cynthialeopold60]

Yesterday I finally had the EMG done at UCLA, the good news is that the procedure was not bad but the bad news is that it came back with the dreaded ALS diagnosis. Funny I new what I had last July but having it medically confirmed shook my cage.. It took my family out of denial in a harsh manor. I need to help them and other than being strong myself I am at a loss what to say or do. We are very emotional at this point and could use any help any of you might offer up to get past this pain and try to live each day to its fullist.

I want to be proactive and prepare my estate, apply for disability,prearrange funeral arrangements,and get a handicap plackard and then proceed with living. My family thinks that is giving up and I feel that its being realistic. What do you think and how did you handle this news in your life?

Any words of wisdom would be greatly appreciated

 

[jp's wife]

Good for you for finally finding out what was wrong!Very wise of you to prepare for the future & put your mind at rest! Now go on LIVING!

 

[Al]

Sorry about your diagnosis but live for today and plan for tomorrow. That's not giving up. It's being smart.

AL.

 

[momap53]

B. proactive! Get those details taken care of while you have the energy to do them! Best of luck with the family.

 

[notgivnup]

So sorry about your D X, I think you are being smart to get all those details worked out. I had to do all these things myself. They are important and necessary. You are doing the right thing. Then get on with your life, stay positive, do all that you can and want to do Now.
You will adjust to your new normal, we all have too. We are all here for you on your new journey, for support and to answer questions as best we can. There are so many with wisdom to share..... One day at a time, but prepared.

 

[Ms. Pie]

I'm sorry for your diagnosis as well Cynthia. I remember all too well the confirmation of my worst fears with mine. Yes, prepare for the future but try to live your life to the fullest you are able. Things you've been wanting to do, do them now. Your emotions will calm somewhat over time, but crying is really okay. Try really hard not to become ALS. Live your life. Try to laugh as often as you can. Stay close. Get in touch with your local chapter of the ALSA. They are a wealth of information and resources. Ask any questions here. These people are a treasure and know everthing about everything. I don't know what I'd do without my friends here. Welcome!