Worried & Anxious

[mamaw2hr]

I hope somebody can give me some advice...I have seen a neurologist twice...before EMG testing results and MRI results, he diagnosed me with having ALS...after the results, my daughter asked him if this was his professional opinion that I had ALS, he said yes...so he's supposed to be making me an appt to see specialists at OSU for a second diagnosis..anyway, my symptoms started last fall with slurred/slowed speech, weakness in my hands, trouble gripping things, twitching in my arms and shaking in my hands...I have no strength at all in my hands..cannot turn door knobs, hold coffee cups, etc...I'm scared, really scared. I'm a grandmother of two beautiful grandchildren and I want to see them grow up, graduate, get married and have babies of their own. My symptoms are definitely getting worse. I'm just waiting for a call from the neurologist about my appt with OSU....that was 4 days ago and I haven't received a call yet...how long does it take to make an appt? Anyway, I was just wondering about all of these symptoms.....does it sound like ALS to anybody else? The neurologist has told me twice that's his diagnosis....:-(

 

[mamaw2hr]

I forgot to post another symptom....I have a lot of trouble swallowing right now...it seems like I'm choking everytime I eat.

 

[frankb]

So sorry about your diagnosis, but welcome to the ALS Forum. The Forum consists of the most careing and helpful friends that one will ever meet. After all, we are all in the same boat arn't we? Concerning your question about the time it takes for a second opinion. Many of us have gone through the same problem. However, your referral to the OSU neurology center a very good thing. One thing you might want to consider is calling OSU's ALS center and explain your problem and coordinate your second opinion through the ALS center. Chances are that you would be seeing the same specialists that you will see later on in your treatment phase. My referral proceess got tangled up between my referring neurologist and the ALS clinic that I was referred to, with the ALS clinic saying they have a problem receiving diagnosis data from my neurologist. Very stressful. Also, please contact your nearest ALS Association. They are an invaluable resource in provinging information and support for ALS patients, and specially for the newly diagnosed. My local chapter really helped me and my wife understand and deal with this dreaded disease, particularly in the early stages. God bless, and remember that you amoung friends here and no question is to small for our loving and caring group.

 

[ottawa girl]

So sorry for your preliminary diagnosis. I know how you feel! Really. BUT, you are not alone. This forum is a great place; you can gather a lot if reliable information and everyone here is very compassionate.

There is life after diagnosis! Make the best of it. Once you adjust to your new reality, you will surely find angels (disguised as people) everywhere. I know your head is spinning right now, but take it a day at the time. If you want an appointment ASAP, pester them. Once you get set up with an ALS clinic, the team of professionals will teach you how to deal with the pesky symptoms. In the interim, eat very slowly, little bites. Take thick drinks like boost or ensure to increase your nutritional intake. I believe by bending your chin towards your chest when swallowing, will avoid choking.

Wishing you well. If you have questions, don't be shy. Also, you can search threads for more tips.

 

[mamaw2hr]

Thanks everybody for the kind words and good advice....this is a very scary thing right now...Seems like I can't even talk about it without crying..my husband is having a very hard time too. I'm going to try to find a support group for us if it definitely turns out to be ALS...we're going to need support. I'm glad I found this forum and have people to talk to. thanks again.

 

[pearshoot]

we thank you for sharing, this move is one of the first steps you can take to get your mind wrapped around this. definately join local support group. they will become part of your extended family. if second opinion confirms seek local multidicipline clinic and use all their resources avaiable, they also becme extended family. i pick up one or two helpful tips each time i go. we are here for you take care

 

[bob_s]

I know you're scared and upset. That's an understandable reaction. My wife and I went through a similar period of shock after the first diagnosis. You're getting a 2nd opinion, so try to take it one day at a time.

Bob

Thanks everybody for the kind words and good advice....this is a very scary thing right now...Seems like I can't even talk about it without crying..my husband is having a very hard time too. I'm going to try to find a support group for us if it definitely turns out to be ALS...we're going to need support. I'm glad I found this forum and have people to talk to. thanks again.

 

[ECpara]

I am so sorry, Mamaw, for the road you are going down. It is so very hard. I remember my husband experiencing all that you are going through, and I felt the stress right along with him, so I know what your husband feels also. My husband's neurologist referred him to the Duke ALS clinic for a definite diagnosis in December of 2011. Duke didn't schedule him until April! With a lot of persistence we were able to get him in by February. Those two months seemed like forever. The diagnosis came that day at the clinic and we've been adjusting and accepting ever since. My heart goes out to you. It is quite a journey. I will lift you up in my prayers. Blessings, Nancy

 

[SMP51]

Thanks everybody for the kind words and good advice....this is a very scary thing right now...Seems like I can't even talk about it without crying..my husband is having a very hard time too. I'm going to try to find a support group for us if it definitely turns out to be ALS...we're going to need support. I'm glad I found this forum and have people to talk to. thanks again.

I know it is scary but don't get the cart before the horse, our local neurologist did a ekg and gave us a heads up on ALS but it was Mayo clinic that pinned it down as ALS after a lot more testing.
A customer of my work went through the same process and happliy was eventually told it was not ALS.

 

[SMP51]

edit....emg (and mri from the local doc)