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amyst

Member
Joined
May 4, 2012
Messages
23
Reason
PALS
Diagnosis
03/2012
Country
US
State
tennessee
City
my town
Hello to everyone. This is my first post so I hope it's in the right place. I will try to keep it simple.

I have been given a diagnosis of probable ALS by a neurologist speciaizing in neuromuscular. I have dropfoot, muscle cramping, weakness and twitching. He performed an extensive emg that supports diagnosis and I've had mri that ruled out other conditions.

I've been referred to Emory in GA and Vanderbilt in TN. I have appointments at both now 2 days apart.

Should I pick just one? or is 2 days apart too close? I have no idea what to expect and I don't know if being overwhelmed 2 days apart is a good idea, but I think I would like to check out both places.

I appreciate all opinions and any information on what to expect at either clinic.
 
For us, a few hours at the Mayo Clinic in Jacksonville, Florida, was the definitive final word.

Mayo's type of practice is radically better than all others. Perhaps Emory or Vanderbilt has the same excellent type of practice.
They gathered all the records and tests from all over, in advance.
Then we sat in one comfortable room with a professional ALS expert for several hours while their specialists came in and answered all our concerns.
At the end we felt that everything was definitely conclusive and we had all the guidance we needed to make future decisions.

After that, the Veterans Administration ALS Team in Tampa VA Hospital took care of everything we needed for education, equipment, etc.

I imagine Emory is just as good, so you might not need a second appointment.
If you want, call those clinics and ask them to describe what is in store for you there.

I'm sorry you're going through this. You're always welcome to post in the forum, even if it's just to rant or just to be heard.
 
My local Neuro was pretty sure I had ALS when I saw him in Nov. 2011...dirty EMG, twitching, muscle cramping, drop foot, weakness, test results that had ruled out other things, etc. He referred me to Vandy to make sure. On Dec 14, 2011 after about a 2 hour exam by a student Dr.....Dr Peter Donofrio popped in the room & pretty much did the same tests that student Dr did. Poking me with a pin, reflex hammer, looking in my mouth for a VERY long time, strength tests on legs/ankles/arms/hands, etc. After that was over (student Dr was still in room) Dr Donofrio told me he was "pretty sure" I was in the beginning stages of ALS. Then he set me up for an EMG back at Vandy on Jan 3,2012. That EMG was done by a student Dr....after she printed off the results Dr Donofrio popped in room and looked at test results and said he was "pretty sure" I had ALS. After student Dr left room I asked Dr Donofrio was he positive? Could it be ANY thing else? He said he was positive I had ALS...I then asked how far along he thought I was...scale 0 to 10....0 being not having ALS and 10 being dead....He thought for about a minute and said "3"...he told me about Ritulik (i don't think i spelled it correctly) and about the ALS clinic Vandy has.
Cape Girardeau, MO (much closer than is Vandy to me) has a hospital that has an ALS area also....I so wish it was one of my health insurance providers but it is not....It's not so much I wanted another opinion but would really like to see what there approach is with ALS patients.
If you feel up to it I would go to both hospitals. That way you can compare and see which one is right for you.
Let us know how it turns out.
 
I go to Emory. This is a world class ALS clinic. You can not go wrong there.
 
That is the clinic I have my first appointment with. At first I was more interested in Vanderbilt, but I've been reading about Emory's stem cell clinical trials and that has my attention.
Do you have any idea of what I can expect or prepare myself for my first visit or is it just different for everybody? And do you have an opinion on if it would be practical to go to another clinic 2 days later? The only info I've really been given is to expect a long day.
Thank you so much and I don't expect precise details. I'm just really nervous and the slightest insight in what to expect helps.
 
I think it would be overkill to go to another clinic two days later but that is up to you. You can always go to both and see which one you like better. Your first visit will probably consit of some Residents (often Dr's on fellowship) going over your history, and doing an exam. They will also take any additional paperwork or MRI's or whatever that you brought and review that. Then Dr. Glass and others will come see you and he will do his own exam and ask you many of the same questions.

I hope you do not get diagnosed and they find something else.

As far as the stem cell trial please keep in mind that it is a phase I safety study at this point and they have only done 15 patients thus far.

Good luck. Let us know how it goes.
 
I made another post to answer your question but it went to moderation, so please be patient. It will appear later. Thanks
 
Thank you all for the replies. They are helpful. I still have several weeks before I go. Right now I'm thinking I'll go to both but that may change.
My local neuro is pretty confident in his diagnosis and I am too. My story is a lot like you CathyP. Your beginning sounds like mine.

It's very strange. Sometimes it all seems like a joke. I will be in bed and feel so normal and feel positive nothing at all is wrong with me. Then I get up and walk and I definitely can't walk like I used to. I have a brace for my drop foot. Other times I feel very weak. Not tired, physically weak. That's something I have a hard time explaining to my husband. The difference between tired and weak. Then of coarse, the other symptoms remind me too. This is so new to us and our heads are still spinning.
I see you took care of your wife Atsugi. I'm very blessed with a wonderful husband myself. I'm worried about him though.

You're right TedH5, I do need to keep what I read about clinical trials in persective. I still have a lot to learn.
I will let you all know how it all goes. In the meantime, I'm trying not to dwell too much. Easier said than done when the changes in me can't be denied or given another excuse anymore.
Thanks again for taking the time to respond to me, a new person asking these questions in my first post.
 
I don't know if the neurologist's office told you about the ALS Association, but please contact them. They have so many resources that will make this journey easier for you. I'm not sure what part of TN you are in, but if you are in West TN, the contact is Beth Bumgardner at (901) 854-8661.
 
Emory ALS Clinic is great. Dr. Glass and Dr. Khan are wonderful, as are their staff. I hope you will have a different diagnosis. Good luck!
 
Our local neuro did not diagnose ALS; we were desperate for answers to a year-and-a-half of worsening problems. Finally got a doc-in-the-box to refer us to Vanderbilt. We have been with them since June 2010, the month our lives turned upside down. We love Vandy and specifically Dr. Amanda Peltier. We have seen the student docs too, but wouldn't trade Dr. Peltier for anything in the world. It is a 7 hours drive for us and we have considered transferring to Emory or Mayo in Jax, but we are happy with the Vandy clinic. Clinic is chaotic, that is for sure. I am not sure I could handle two clinics in 2 days, BUT, if it were possible in the early days to have done that and gotten more opinions I think we would have done so. Now, two years later, life is just plain hard and we still wish and look for other answers every day. Make sure in the beginning, so you are not riddled with such questions later. I know there is nothing else, but ALS is just so darn hard to accept. Good Luck and Best Wishes.
 
Not really close to you but I am a big fan of the ALS Dart Clinic at University of Virginia. But most of the big clinics are amazing!. As a side note, my neuro prescribed Mestinon (a myesthenia gravis drug, low side effects and generic) for the fatigue and it worked miracles for me! If not contraindicated, certainly worth the try.

And don't we all wish this were just a dream! Hang in there
 
Thanks Miss, no I wasn't informed of the ALS Association. I live in east Tennesee. I looked it up and found the contact for my area. I have a lot to ask. I just don't know if they want calls from a probable diagnoses patient (even though I feel positive it's correct), do you know if probable is enough to go ahead and call?

I have such mixed emotions; I certainly don't want ALS but I don't want that ever so slight feeling of doubt that really just helps keep mainly my family in a state of denial and searching for other possibilities. Since I have it I just want it confirmed so we can move forward with decisions instead of this limbo state of holding out with important decisions with a "just in case" excuse. I also know I will feel devastated all over again like when I was first told. It's scary.

brooksea, I'm definitely going to emory. I'm thinking of calling vanderbilt and explaining the situation to get their opinion on wether or not to keep scheduled appointment or set a new date. Right now I want to just go to both in same week, but I'm trying to be practical and realize I'll pobable be drained after Emory. I wonder if I can leave Emory with there findings in hand to take to Vanderbilt 2 days later.

Wow AlabamaGal, I can't imagine being stuck in that state for a year and half! So sorry and glad that part is over for you. I'm also lucky in that both Emory and Vanderbilt are both about a 2 hour drive give or take a little.
And yes just getting first visit over and deciding which is best for me is the only reason I'm considering 2 clinics 2 days apart.

Thanks hjlindley, I wrote that drug down for future reference.
 
Your story sounds familiar. I have days when I think that this is going to be a misdiagnosis, then I have nights and days when I know they are right. I'm glad that you have two good clinics to choose from. Hope all goes better than you expect. Will be praying for you.
 
I contacted the ALS association in my area. The lady I spoke with was very nice and patient with me. She sent me forms to register with them and some information on living and coping with ALS.

She also gave me a contact to call at Vanderbilt to ask if the 2 days is too close. The lady I spoke with was very polite and said she would ask Dr. Peltier and get back with me that day or the next. This was last week and I've not heard back. I did receive a duplicate in the mail of my appointment date and time today.

I'm trying not to form any opinions between the two clinics until I visit both but I have to say Emory has been on top of things more. They've contacted me to make sure I'm registered right and sent information I need to fill out.

I've had to contact Vanderbilt to request papers twice and all I've received is a map with the provider name and date and time of appointment.

Still, I'm trying not to form any opinions as far as which is best for my treatment until I actually go.
I'm sure I'm not in the right frame of mind to make any prejudgement anyway. I'm still waiting to wake up from this nightmare.

Cindy, it's nice knowing I'm not the only one with those feelings. It makes me feel crazy. Yes, I am lucky to have 2 clinics close by. Thanks for reminding me of that. I need to appreciate that fact. I've read of several people driving 7 or more hours to get to the closest place.
 
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