Diagnosed with ALS on 9/22

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JodiR

Member
Joined
Jun 1, 2022
Messages
21
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
WI
City
Milwaukee
I had my neuromuscular specialist appt today at Froedtert/the Medical College in Milwaukee and am waiting for labs for confirmation of exclusion of other diseases. However, the neurologists feel very strongly that I have ALS. After their very thorough exam, they said I have both upper and lower neuron involvement. Not what I wanted to hear.
 
I am sorry. I know things were looking this way but was hoping for another answer. I know you were too. Are you still moving next month? It is so hard to be in the middle of all these tests
 
I am very sorry. My hope for you will be that you have tons of support and lots of resources. Sending love from NC.
 
I am sorry to learn about your diagnosis. As you know, this forum is very helpful. Please reach out for information and support at any time. I am thinking of you at these final tests come in.
 
yes. We're moving. I'm working on setting up appointments with the ALS clinic in Tucson (part of the University of Arizona). We're going to snowbird. My Milwaukee neuro thinks that's great. I have an appt set up for May 2023 in Milwaukee.
 
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I also received this lyme test and have a message in to the neuro to discuss. I guess it's inconclusive?
 

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Good luck with the move. Snow birding sounds wonderful. Many of us become temperature sensitive So snowbirding is great
 
Again, I know that I'm new to this. But with having symptoms (slurring) for almost 20 months I'm hoping for slow progression. Perhaps, isolated bulbar ALS? Or, better yet, a change to my dx to Primary Lateral Sclerosis. A girl can dream and pray, right? 🙏
 
I hate bursting bubbles but you said there is definitely upper and lower motor neurone involvement, so that rules out PLS.
But I can hope you will have slow progression. Sorry to welcome you in.
 
Diagnostic delay ( long time from symptom onset to definitive diagnosis) correlates with slow progression so you have every reason to hope for it. Was nuedexta discussed? It is for emotional lability but there is some evidence for temporary bulbar improvement especially for swallowing
 
We didn't discuss nuedexta, but I will ask him. My swallowing isn't horrible. I have tongue weakness and tongue atrophy. If I take small bites and take my time, I'm ok (for now).
 
It will be worth discussing nuedexta for sure and also a feeding tube. Making plans in advance can help you feel like you have more control than finding yourself in a crisis.
I think that is one of the best benefits of being here - such a wide range of experiences to tap into.
 
Sorry to hear of your diagnosis. My husband received his definite diagnosis on 8.16. We are in patients with New York Presbyterian, ALS clinic. You will find very good resources on ALS.ORG They have documents by topic. If you call the ALS Association they may be able to help you. We are fortunate that they are active in the NY Metro area and they have been extremely helpful. There are also non profits out there that may be able to loan or give you equipment (they have grants).

We also had a diagnostic delay. Tom started having slurred speech in March. Coughing after drinking in
April. In NJ we have to wait for appointments with HCP and tests. So, it took from April to end of July for all of the physician visits and tests. Tests were: Blood, MRI, Chest Xray, Barium Swallow and EMG. Once diagnosed by NJ neurologist on 7.27 we were given an end of August appt with NY Presby, but then I was able to move it up to August 16.
With the earlier appts and tests, I had to call to see if there were cancellations or if we could be moved up in the schedule. We waited 3 months for swallow therapy with St. Barnabas Medical Center (no other provider in the area had openings either). But....Ny Presby said they did not want Tom to continue with the swallow therapy. He has bulbar onset ALS.
The Healthcare system in NJ is very backed up. Lots of delays.
 
I also had diagnostic delay and I'm a progressing very slow. That's great that you'll be avoiding cold weather......and hot weather.

I'm sorry your diagnosis was confirmed but happy that you have a great attitude.
 
rule of thumb: when you're diagnosed, never, Never, NEVER trust anyone but yourself. search, search...
experts?
here is what they conclude:
after 9 years:
and
<link removed, fundraising>
this also:

you can say: "i'm not mouse!" neither am i. i am no c9, but now i am on 1250mg/day today.
i dismissed all experts when i got diagnose.
good luck!
 
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