First appointment to a ALS clinic

[texastracy]

Can anyone tell me what happens on the first appointment at a ALS clinic. I'm going to Dallas in September. I have a EMG/NSV and a 1 hour consult with the doctor.

Tracy

 

[Txgirl]

He will examine you and then do an EMG. Then he will tell you if it is "worrisome" for ALS or not. Then you will take the elevator up stairs to Labcorp for LOTS of blood work. If Jessica draws the blood you will never feel the stick & she is quick! After all the bloodwork is back You will go back for the final yes or no for ALS.

 

[texastracy]

Thanks. Do they set up me with a case worker and tell my local neuro to refer me to PT, speech therapist and a pulmonary doc in my hometown?


How do I turn on private messaging?

First week of school is in the books. 17 great students in my class. My best friend teaches across the hall. She has set it up with the other 3 teachers on our team to help me get my kids to PE each day to save me a 1/4 mile round trip. Praise The Lord for teamwork and friends.

Tracy

 

[Txgirl]

You will have only one neuro and that will be Hei tzman since he is an ALS specialist. When you go to the ALS clinic every 3 months you will see the case worker, PT, OT, speech therapy and respiratory.

Since I am already having breathing problems. I now have a local pulmonary doctor.

To turn on private messaging. Go to your user control panel (user CP) it will be in the drop down menu.

That is great that the other teachers are helping you. It is wonderful to have friends as co-workers.

 

[JamieL]

Tracy-

I replied in your other thread as well. I wanted to add that our journey was a bit different in that we'd been seeking a diagnosis for about 9 months by the time we got to Dr. H. It was a LONG road, and it was actually a different neurologist here in Dallas that diagnosed her. He specializes in strokes and my dad was just certain that's what her problem was even though her MRIs were all clear. So of course he looked at the scans and said she did not have a stroke but he "suspected something worse." It was there that they did the EMG, bloodwork, etc. and then at some point (a week? Two?) they went in for the results and were told it was ALS. I would not send my worst enemy to that place (long story) and knew I wanted my mom treated in an actual ALS clinic. So I made arrangements for it. But what they sent to Dr. H was incomplete, and my dad was on the phone trying to sort it out (and we NEVER get good communication that way), so our first appointment ended up being a "clear up the confusion" appointment. Dr. H did a very complete physical exam, but did not take more blood or do an EMG. He just got that info (finally) sent to him from the other doctor's office. After reviewing that, he agreed she did indeed have ALS and set her up for the next clinic. I described that process in the other post. I did forget to mention that they have coffee and last time we got some awesome BBQ.

So my advice would make sure ALL test results and full chart info from your current doctorS are sent to them first. Don't just fill out the forms and assume that your neuro sends everything. Especially if he's already a jerk... odds are good his office won't be diligent in getting your records over there. What Dr. H got for my mom was a chart that said something about "suspicious of stroke, MRI not indicative of stroke, ALS diagnosed 2/9/13." But no mention of bloodwork, the exam he did, any of the other tests, that an EMG was even DONE much less the results, etc.

 

[texastracy]

TxGirl and I have talked on the phone and texted some. She also goes to the same clinic. I know I have ALS. I'm hoping I can go to the October clinic. If so I will get to meet TxGirl at the clinic.

Let me know when you are going with your parents to the next clinic. It would great to meet you.

How is your mom doing?

I miss my mom and dad so much. My dad died in 2003 and my mom in 2005, both from cancer. They would have been devastated at my diagnosis. My mom lost her mom to ALS. I have 2 sisters. I am the oldest. I just turned 50 in July. When I turned 45, I told my family I intended to live until I was 90, so I was only done with 1/2 my life. Little did I kmow....

I am married to the most wonderful man. He helps me in the kitchen by cooking, cleaning, and emptying the dishwasher. He is also helping me with tying my shoes, buttoning and zipping pants. The other day he had me show him how to put a ponytail band in my hair so he can help me in the morning, when my hands are tight from sleeping.

Lots of info you may not have wanted, but I needed to say. Thanks for reading.

Tracy

 

[JamieL]

I'm glad you have a helpful and supportive husband. This disease is so awful and such a devastating blow. My mom is 71 and even though she isn't "young," it is still such a waste of life. Unfairly robbing a woman who worked her entire life to enjoy her golden years in her dream home that she designed and had built. Enjoy her grandkids, tinker around her house, making her crazy craft projects, etc. This is not how it was supposed to be.

I was just there this weekend. Had to teach my dad how to balance the checkbook and figure out their finances. Mom has always handled that. Thankfully she's very meticulous so it was easy to figure out her "system." I saw one of my sisters literally wrote out a "how to" list on how to do laundry and put that above the washer/dryer. My other sister made him a menu and instructions on how to make simple meals since she's always been the cook. Funny how we say women are "the weaker sex," but time and again it is proven who really keeps a household going! Anyway, she got a feeding tube on 9/5 but she can still swallow. Speech is getting worse. She's using a walker but she can still walk, use her arms, etc.

Next clinic for us is 11/1/13. Hope to be able to meet you one day- maybe y'all will be on the same schedule at some point.

 

[texastracy]

I bet we will be going on that date because my husband has a business trip the week of the October clinic. I don't think I'm ready to take my son (24) and daughter (20) there yet. Plus I don't want to go to the first one without him.

TxGirl also goes to the same clinic. She is going in October.

Add me to your friend list, and I will do the same and we will keep in touch.

Tracy

 

[texastracy]

We are going on 11/1 at 8:30.

 

[Bad Balance]

Take actual copies on disc of your MRI's....do not assume that hospital records are interchangeable ...they are not.
Also make a written list of questions ahead of time to take.
Always go with your spouse or close friend. They may hear things differently than you do.

Be polite, but you do not have to allow for tiresome interviews or studies...it is your clinic visit