Recently diagnosed with MND-- Nuerologist said ALS diagnosis of choice

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Hammertime

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Apr 27, 2019
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Learn about ALS
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Country
US
State
FL
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Ponte Vedra Beach
Hi,
I am definitely new to the isidious world of MND. I've been experiencing symptoms for about a year... maybe a little longer.
First, started with weakness on my right side... predominantly legs and feet. Forward several months...I now have trouble climbing my stairs, cutting my food, staying balanced, walking is becoming an issue, twitches continue to prey upon my limbs and my voice is changing to the point, I forget what I sounded like several months ago.
The list goes on....
I've always been a very positive person with a great support group... I am blessed. I appreciate the opportunity to be a part of this much needed support group forum.
I'm wondering if anyone has had muscle weakness in their face??? When I drink water, sometimes it dribbles down my chin... Another new experience. Also, my lips seem weak and I've had some light twitching on my face. Is this all part of this dreadful disease??
I appreciate any feedback and would like to become more involved in any way I can.
My prayers are with each of you.
Living one day at a time...
Mary Ann
 
Hello and sorry to welcome you here.

I moved your thread to the DIHALS section because it wasn’t clear if you actually have a confirmed diagnosis of ALS or if you’re in the process of being evaluated. Please let us know if you’ve been diagnosed, and I will move your thread.

Muscle weakness in the face definitely can be part of ALS along with weakness in the other areas you describe.

What does your neurologist say?
 
Hi Karen,
Thanks for getting back to me. My neurologist and neurosurgeon have ruled out pretty much all other diseases, if you will. My last visit...Two weeks ago... I was told, ALS was the diagnosis of choice. Just to make sure he's sending me to an ALS specialist on May 9 for a complete exam and EMG/NCS. Obviously, I'm a bit concerned and it seems my symptoms continue to progress. Atrophy is very apparent, along with muscle weakness...My right hand registered a 5 on the grip scale. Any insight you can give or questions I should ask would be greatly appreciated. Looking forward to getting to know you better. You are certainly in my prayers.
Blessings,
Mary Ann
 
Thanks for clarifying.

“Diagnosis of choice” is not exactly a title I’d give to ALS. “Diagnosis of last choice” would seem more fitting.

I’m glad you’re getting that second opinion from a neuromuscular specialist. We recommend that anyway, even if ALS appears to be the likely diagnosis.

As far as questions to ask — just prepare yourself by organizing the timeline of symptoms. Bring along any records and test results you have from other physicians. It helps to have a family member along.

If ALS is confirmed, you can ask if this specialist works with an ALS clinic, and if there is a care coordinator you would be working with. Ask if s/he feels you need any assistive devices to help you walk. Ask about medications Riluzole and Edaravone infusions, what they think might be appropriate for you, and if this doctor participates in clinical trials (if that interests you).

Best of luck.

Hopefully others here will chime in.
 
Hi, Mary Ann,

I too hope something more treatable is surfaced by the testing. You may wish to read this sticky.

Best,
Laurie
 
Sorry you are going through this. I would add to the meds you would ask about if diagnosed Nuedexta since you are having issues that if ALS would be bulbar. Nuedexta is aporoved for emotional lability which can happen in ALS. It also seems for many to temporarily help bulbar issues eecially swallowing. There are many anecdotes but also a clinical study.
 
Hi Karen.
Thanks so much for getting back with me. I'm going to be seeing an ALS specialist on May 9. I'll be sure to post the outcome. Keeping my fingers crossed. However, lots of weakness, atrophy and voice changes, among other things.
Blessings to you,
Mary Ann
 
Hi Nikki,
Thank you for getting back to me so quickly. I'll be seeing an ALS specialist at an Award in Excellence Teaching Hospital on Thursday. Keeping positive thoughts, despite the many symptoms and thoughts of other docs. You're in my prayers. Looking forward to talking with you in the near future. You are obviously a special person and I'm grateful for your input.
Blessings,
Mary Ann
 
Good luck tomorrow. If you have not already have a look at the post near the post here getting a diagnosis and the second opinion one in the general discussion forum. I have found the better prepared I am the more I get out of appointments. This is especially true when it is an important and stressful visit
 
Hi, Mary Ann,

I too hope something more treatable is surfaced by the testing. You may wish to read this sticky.

Best,
Laurie
Hi, Laurie,
Thank you for your concern. I'm anxiously awaiting my appointment on Thursday. I'm sure I will have a lot more questions after that. This is such a wonderful way for people with MND to share and care!!! I look forward to talking with you in the near future.
Blessings,
Mary Ann
 
Mary Ann,
Praying it is something else. Best wishes.
 
Thank you so much. All best to you.
Mary Ann
 
Good luck tomorrow. If you have not already have a look at the post near the post here getting a diagnosis and the second opinion one in the general discussion forum. I have found the better prepared I am the more I get out of appointments. This is especially true when it is an important and stressful visit
Thank you so much, Nikki. I appreciate your input and your wisdom. It's so nice having people who understand what you're going through and are willing to share. Have a blessed evening.
All best to you,
Mary Ann
 
I just reread this thread and sending you good wishes. Hope all went OK at your appointment.
 
I just reread this thread and sending you good wishes. Hope all went OK at your appointment.
Hi Regina
Thank you for your well wishes. My appointment is actually tomorrow at 10:00 am...Shands UF with ALS specialist, Dr. Pulley. Lots of prayers, tonight. Will catch up with you after appointment. Hoping to get some concrete answers.
Wishing you well.
Be blessed,
Mary Ann 😊
 
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