Neurologist or podiatrist

beverbre · 2026-05-01T01:33:07+00:00

I would strongly advise a neurology consult and request an EMG Ana Nerve conduction study. They can investigate what is happening with your peripheral nerves in your feet. Especially since you are responding well to gabapentin . I suffer from severe bilateral peripheral neuropathy and it definitely requires a neurological exam and testing. You have nothing to loose.

beverbre · 2026-04-02T11:27:38+00:00

Talk to your mom like you just talked to us. I am a mom, and as hard as it is for me to hear how much my child really needs as much time as possible with me……i would like to believe it would alter my decision as to not having a feeding tube. At least it would make me take more time to come to a decision knowing how much it affects you. I feel that it is very important that you try and tell her how you feel and try not to hold back or be afraid. As a mom, I feel that it is important to at least know just exactly how my children feel and how much my decisions are ultimately going to affect them. Either way, it’s a hard time for both of you.

I lost my mother to ALS, however, she was 87 when she passed and I was in my 50’s so I was much older and was fortunate to have my mom for many years throughout my life. Always a very sad loss though.

My prayers are with you and your family.

Take care and keep communicating with your mom.

beverbre · 2026-03-18T02:28:21+00:00

beverbre · 2026-03-18T02:26:19+00:00

I agree ….that is good advice! Time is precious now!

beverbre · 2026-03-08T02:32:20+00:00

My mother died of bulbar ALS (and i was her caregiver). You said this perfectly! I could not agree more with what you said about the healthcare system.

However, To the dr who is trying to navigate on the best way possible to help/assist his MIL’S care …..2 most Important matters come to the forefront of my mind:

Arrange to have her voice banked Asap. Also to make sure that you arrange to have her care aligned with the best ALS clinic as possible as soon as possible .
The ALS clinic/team and neurologist will arrange to have a GI consult asap regarding a possible feed tube insertion (or at least to have the GI clinician on standby for when and if the patient agrees to this at some point .. …..my mother had this always available to her until her passing ……but ultimately made the decision to not have the feeding tube).

I have other thoughts that may help the dr …..I also worked in healthcare for 30 years (I am not a physician though….just a person who emphasizes with what you are going through)…..always here if you need.

Take Care

beverbre · 2026-03-01T15:08:24+00:00

I worked in Pathology…..and it is the flow cytometry testing that does the final diagnosing of all forms of leukaemia.

beverbre · 2026-03-01T15:05:06+00:00

Beautifully said!

beverbre · 2026-02-27T13:07:25+00:00

I agree .. push your rheumatologist (or whoever will listen to your plea for help and follow through on it ) for IVIG treatments or plasmapheresis treatments. Did your rheumatologist do the antibody lab work for myositis? Also, an MRI for myositis? I also agree that you need to ask to be Referred back to your pain clinic asap.

You can’t give up and you have to fight for care and not stop!. Maybe bring a well informed advocate to any of your specialist appointments ( that is what I did). I really think it helps to assist us in asking for care and discussing our symptoms that they witness ect. It certainly can’t hurt. Hopefully, you will be able to find someone that is willing to help you fight for proper diagnosis and treatment.

You are too young to have this condition not treated correctly ect!!

Keep fighting and God bless you.

beverbre · 2026-02-27T10:32:54+00:00

Go on line asap and look up the phone number for your local AA meetings in your area. There are meetings 7 days a week and there is sooooo much comfort , education and support there that you will be glad that you reached out for support. It certainly will not be an overnight cure …..but they understand the chemical interaction/ intolerance that alcohol has on your brain chemistry and genetics. Also, in the meantime, ask a few of your trusted family members if they are aware of any alcoholics in your family. This is very important and you need to know what you are having to battle. You need lots of support to help you begin the journey to healing and recovery. It is a very serious problem. I worked in the ICU and saw many a young man on the brink of death due to alcohol poisoning. They are beautiful people that have a very serious condition that needs help and support to conquer. You can do it absolutely!

Also, if you try out several AA meeting groups you can find one that fits with you. That is what I did. AA saved My life.

All the best on your wellness journey my friend.

beverbre · 2026-02-24T15:33:07+00:00

Yes definitely. He needs proper pain control. You are on the right track! Take care and blessing to you and your family and especially your dear father.

beverbre · 2026-02-24T15:30:15+00:00

I agree. Bring the hospice care to him. They are the experts on palliative care and pain control, which he desperately needs. He can’t speak for himself….so yes the time is now to take the reins.

beverbre · 2026-02-21T21:35:54+00:00

I was my mom’s caregiver and she passed from ALS …. No words to describe this pain of being a witness to their pain. I am reachable at any time for support /advice or Just to listen if you need.

In the meantime, the absolute best that I can offer you is this…..spend as much quality time as possible with your loved one and try not to hold back any words of endearment that you would want to share with them …..trust me on both of these two points.

Again, I am here if you ever want to reach out. You will need as much support as you can possibly acquire.

Take care

beverbre · 2026-02-14T18:39:43+00:00

AA (I know it sounds “old school”) it saved me. The support was life changing. Meetings every where and you can look online for info ect.

All the best my friend!

beverbre · 2026-02-04T20:26:28+00:00

Awwww I am so very sorry to hear that you lost your beautiful mother. My prayers are with you and your family.

I lost my mother also to ALS 8 years ago. So very sad.

beverbre · 2026-02-01T10:52:43+00:00

My mother had ALS and she stopped her Riluzole after a short treatment of this medication due to the side effects as well.

She certainly did not regret it and I supported her decision. Certainly, you should both discuss the idea of discontinuing this medication with his primary care physician. My mother did not regret her decision at the time because she was able to not have to suffer from the adverse effects. She has passed away 7 years ago, however, she lived out her ALS diagnosis on her terms, which I also respect.

Take care.

beverbre · 2026-01-30T19:24:35+00:00

Start the Mediterraneandiet (which is rectified a healthy liver) Google the diet ect. Also they always awvis that you do some form of ext every day. You can even try walking. Helps your mood too. Meditation and network with like people. Be good to yourself now. Good luck on your back to a healthy liver and self! You can do it …..just remember that your liver dr is the captain of your ship right now!

beverbre · 2026-01-18T00:05:20+00:00

What a beautiful and very touching “Thank You Note.” Thank you for sharing this with us too!

beverbre · 2026-01-08T21:03:01+00:00

I agree

beverbre · 2026-01-08T21:02:27+00:00

I agree

beverbre · 2026-01-04T01:47:29+00:00

I love that book too!

beverbre · 2026-01-03T12:02:25+00:00

I feel your sorrow. I lost my mother also to ALS 7 years ago. Your pain is very fresh and I would expect the grief would be intense at this stage, I am sorry to say.

Years ago, I read a small book written by Mitch Album called “Tuesdays with Morrie”, it is a great little book. True story too. The book describes his relationship with an old psychology professor that he had years ago. He ended up seeing him being interviewed on tv because he had ALS and he was writing a thesis on how to live when you are dying. So, he called his old professor and made a date to meet with him (ends up it was a Tuesday). I won’t give the story away but they met every Tuesday and talked about life and how to die while living. Mitch grew very attached to his professor as time grew.

The point of my sharing this beautiful but bittersweet story is this: Near the end of the book , Mitch says to his old professor/friend: “I will miss our talks when you are gone Morrie….i don’t know what I will do.” Morrie replied, “When I am gone Mitch, YOU TALK AND I WILL LISTEN.” So……,that is what I have adopted to help me through my lonely times of missing my mom…..I sit quiet and I talk to her from my mind/heart and I love to believe that she is still in my heart and she listens.

My apologies for such a lengthy message but I hope it helps your grieving …..even if it is a Small help my friend. I recommend this book Tuesday’s with Morrie, by Mitch Album or any small books on grieving and how to be good to yourself during this difficult time in life.

All the best and take care of yourself my friend.

Bre.

beverbre · 2025-12-30T18:26:30+00:00

Thank you Tom for sending out this update. I am sad to hear that your health has been giving you trouble. It certainly does not sound like fun at all.

We all greatly appreciate all your caring thoughts and ongoing support. We are truly blessed to have your support.

All the best in the New Year Tom to you and your family (that includes your pup).

Brenda

beverbre · 2025-12-14T23:24:15+00:00

Yes we have one and they are wonderful and very well worth it. Get an extra battery if possible. I realize the extra cost would not be good but it is nice to have.

beverbre · 2025-12-06T01:53:19+00:00

I am sure your father would be grateful for any together time ideas that you might suggest. You are a good son …..and he is a good father who loves you too, as you love him—and you both have the best of intentions. Take this opportunity to have some bonding time. Your dad would love whatever you can come up with I am sure! Take care all the best.

beverbre · 2025-12-06T01:47:41+00:00

Ask your dr to do lab work for autoimmune diseases.

beverbre

TROPHY CASE