Recently Diagnosed

[bwest10]

Good morning everyone. I received an ALS diagnosis last Thursday. I have had neurological issues since August of 2021. Early presentation of symptoms were just in my feet and legs. I live in Brentwood, TN, which is just south of Nashville, so went to Vanderbilt Neurology about 3 weeks after symptoms started. I had MRIs, blood work, and multiple EMGs done in the first 3 months after going to Vanderbilt. Symptoms and EMGs at that time pointed towards Guillain-barre or Chronic inflammatory demyelinating polyneuropathy. Since my symptoms started one week after Pfizer vaccine, the assumption was I had an autoimmune response to the vaccine. IVIG treatments were ordered and I went through infusions every 3 weeks for 8 months but saw no improvement in symptoms and actually slowly got worse. In the last 2-3 months my condition has worsened and in last 3 weeks there has been a pretty rapid acceleration in symptoms to my arms, throat, tongue, and respiratory system. An EMG last week indicated a clear case of ALS.

This has obviously been a shock to my wife, my family, and myself. We don't have the heart to tell our 5th grade daughter yet. She knows I'm very sick but doesn't know the finality of my disease. I know the road ahead for me and my family is going to be brutal. Not going to lie, I'm scared to death. No choice but to push forward though.

I have pulmonary and ambulatory appointments at Vanderbilt this week and have an appointment at Mayo in 2 weeks for further evaluation. My Neurologist prescribed Relyvrio, Radicava,and Riluzole. We are working on getting those filled. Is there anything else I need to be working on or asking for? Sorry for the long first post. Thank you

 

[Tomswife]

Bwest10. I am so sorry for you and your family that you have this diagnosis. The advice we received from Dr. Hiroshi Mitsumto, who has been a leader in the ALS field for decades is - dont compare your progress to others with ALS. Everyone is unique in how they manifest ALS and how they progress. The other advice is keep your weight up (even if you are overweight).
You should start on Riluzole asap, and it is reasonable in copay.
This forum has a good search engine. There are older posts with tons of good advice. There is good material on the ALS ASSOCIATION website for newly diagnosed.
Start planning early for equipment and how you will live in your home.
My heart goes out to you.
Kathy

 

[Mary2]

BWest10: So sorry to have to welcome you here. In 2016 my husband had a dropped toe and this was attributed to the need for back surgery. But his walking got worse not better and in the Spring of 2018 my husband went to Emory and an EMG was such that he was diagnosed with peripheral neuropathy. He began IVIG treatments that Spring and felt he was having improvement. However his walking deteriorated further and an EMG in March 2021 revealed ALS.

The pulmonologist will discuss bi-pap with you and the option for using this in the future. Placement of a G-Tube
at some point will also be discussed with you. The doctors will want to place the g-tube while your pulmonary function is still strong. A swallowing test may be suggested to ensure that you can eat without aspirating...food going into your lungs. Some people bank their voices for the future. If your tongue is involved already, you likely need to consider voice banking now.

The ALS Association in GA was able to provide a little funding to us ..1k every 6 months to the first 100 people that applied. They also have a van program. So it is worthwhile to check and see what the ALS Association of TN has available.

When I was about to enter 5th grade we had an event happen in MA. All the adults were speaking in hushed voices around me. Well...I knew what the event was. It was all over the tv. But no adult ever talked to me about what was happening. I carried some resentment about that into my adult years. Your daughter just has to hear the words ALS once and she is going to google it. She might benefit from some counseling along the way.

My heart goes out to you and your family. This is a wonderful forum. It provided me with much emotional support so if you have any questions or any feelings you want to share please do so.

 

[Tomswife]

The forum has a "resources" section and there is a document for newly diagnosed.

THE ALS ASSOCIATION NY Chapter also has a set of documents by topic. The first one is attached.

 

[SteveO]

BWest10,
Very sorry that your diagnosis has brought you here, you will find a lot of information and some very compassionate people on this forum. If you have questions not answered in the form search function, ask and you will receive answers and input from a multitude of very knowledgeable individuals. Having been diagnosed in late 2022 I know the feelings that you are having and also the fears, please know that we are here to support you in any way possible.

Steve

 

[KimT]

It's good that you are getting a consultation at Mayo. I'm sorry you got the diagnosis. Nobody can predict your progression. Some slow, some fast, some plateau.

You didn't mention what kind of insurance you had. Did you go out on disability? Once you get a diagnosis of ALS, you are eligible for SSDI as long as you meet the working requirements of number of quarters. You are also eligible for Medicare but will need to get Medicare B and Medicare Supplement Plan. Plan G is the richest and will cover the 20% that Medicare B does not cover. You cannot be refused unless you don't enroll. Once you enroll, they can't kick you out. You will also need a Plan D that covers drugs. I know insurance can be overwhelming but it's important to select the plan that will give you the coverage you need. Make sure your Will and other financial affairs are in order. That way, you won't need to worry about that later on.

Counseling helped me when I was first diagnosed. I'm not married and have no children. Others have told me that counseling helped their children and them throughout the course of the disease.

In the beginning, you can be overwhelmed with everything there is to take care of so give yourself a break and make a list of priorities.

From the health end of it, get your pulmonary function test, swallow test done. Using BiPap will help you feel better and give you a better quality of life. Same with feeding tube.

Ask any question you want. I found that talking to others who have ALS helped the most.

 

[Nikki J]

My niece was a little younger than your daughter when my sister was diagnosed. She was also the third non professional person who was told ( after her dad and me). They got counseling on how to tell her, arranged for her to go into counseling and told her guidance counselor and teacher. Then told her before anyone else.

i am sorry you are dealing with this but it sounds like you have a good plan of care

 

[North Georgia]

Bwest10,

Sorry about your diagnosis. Seems like you have a good plan of care - I suggest asking your doctors about nuedexta also - it may have benefits for speech and swallowing in addition to its primary target. My symptoms came on right after I had Covid -- not sure how much it matters at this point but there are research reports out that show a possible connection in Covid (RNA function / disfunction) and neurodegenerative problems. You may have a good response to the 3 drugs -- good luck -- this forum is a great resource.

 

[Douglasd]

I’m with you on the fight.
Gabipenton made a big difference. HMU.

 

[Mana]

Also sorry to welcome you, Bwest. You will find support and understanding here. This is a safe place to share all the complicated feelings and look for lots of practical advice.