I'm Not really sure what to do next??

[crue1965]

Hello to all again...

My first post was quite some time ago. 02-15-2014... At that time I was headed to University of Michigan Neurological Dept. for my 1st visit to the ALS Clinic.

At U of M I went through a barrage of test, over an 8 month period. I went from possibly ALS, to Possibly Bone/Blood cancer, back to ALS or MMN. Toward the end of 2014 I received 3 months of IVIG infusions with no positive results, no conduct block shown on my EMG or elevated GM1 antibodies in blood work.

At this time I could no longer perform my daily duties at the plant in I was working at so I had to quit and take a different position with another company where I could perform my job. I was without insurance for a bit so I stopped going to the doctor for over 2 years.

Since being seen at U of M my symptoms have progressed, atrophy in my left hand, arm, shoulder, and back, later in 2016 I noticed weakness in my right hand. So with my wives persistent prodding I made an appointment with Henry Ford ALS Center.

My appointment was on January 17th 2017. I was seen by Dr. Newman. He had received all my records and doctors notes from Dr. Goutman of U of M, in his notes he stated “all signs point toward ALS but the progressions is very slow”.. I was diagnosed on January 17th with ALS, slow progressing. My doctor has started me on Riluzole.

I’m currently still working to maintain our household and medical insurance, not sure if I should continue.

I do understand to predict the progression rate of this disease you will need a crystal ball. I’m just wondering if anyone here has been, or knows of someone, diagnosed with Slow progressing ALS.

• What has your experience been?
• Could this possibly still be something else?
• Should I continue working?

Any advice will be greatly appetited.

Scott

 

[Jlynn]

Crue.. sorry to welcome you here but this forum is a wealth of information. My brother was diagnosed in December 2015 and has what's called slow progression. He had a similar story as ALS was mentioned and then he did not return to the doc for another 1 1/2 years for his official diagnosis. He only did so when he no longer had the strength to work more than 20 hours and could no longer support himself. He still does things for himself but can no longer walk without the aid of a walker and has given up cooking and such. He uses what energy he has for hygiene and eating. Of course every PALS is different.
I would be surprised if you were misdiagnosed but I'm sure others here that are way more knowledgeable than I will chime in and give great advice. My advice is to use this forum. It's wonderful. Again I'm sorry you find yourself here but welcome you.

 

[pittsburghgal]

Hi Scott,

You will find a great deal of good information and support here and I want to welcome you.

My PALS had the first symptoms of ALS (hand weakness) in 2007. The progression to weakness in the other hand was very slow-- so slow that he did not even see a doctor for many years. In Nov. 2011 he was very fatigued and still had bilateral hand weakness and decided to see a general neurologist who suggested the possibility of ALS. He got a second opinion from a neuromuscular specialist who also ran the ALS clinic at the University Hospital, who told him that he did NOT have ALS. He started him on the IVIG infusions with no real improvement. When my husband asked the ALS specialist (neurologist #2) again if this could be ALS, he said NO due to the very slow progression of symptoms, which were still limited to the hands. We ended up going to the Mayo Clinic in Rochester in Dec. 2013 for a third opinion and that neurologist said that it was definitely ALS, which was confirmed by neurologist #2 early in 2014.

My husband's progression continued to be very slow until June 2015, when he had a bad fall which caused a severe brain injury. He was in the hospital for 10 weeks and the progression of the ALS was quick after this, although I think we have reached a plateau for the past 6 months. I can not emphasize enough the importance of trying to be very careful not to fall. My husband had a walker but would not use it.

As far as your question about continuing to work, I can only tell you that I wished we had both stopped working earlier so that we could have traveled while he was still more mobile. If you are financially able to quit working, I would suggest you do so and enjoy your days doing things that bring you joy while you still can.

Sharon

 

[Firefighter58]

Hello Crüe, so sorry to hear about your diagnosis. you situation sounds the same as mine. I quit working about five years ago because I felt I could no longer do my job safely , I was diagnosed a short time later.

My progression has been slow, but I can no longer speak and I walk with the aid of a cane or sometimes a walker. I have an Ipad with a program that allows me to type what I want to say then it says it for me, works very well, my wife can still understand most things I say, but no one else can. this was acquired trough the ALS society, they are so much help with your needs as you go along.

As it got more difficult for me to swallow My neurologist suggested I get a feeding tube installed, this works great, I can still eat normally but use the tube for liquids and my meds. Other then that I feel great, no other problems and I live a pretty normal life.

As far as working goes only you know that, but my suggestion would be to quit and enjoy life.

Good luck Crüe and all the advice you need is available right here, we all want to help just as you probably will in a year or so.

Al

 

[soonerwife]

Sorry to hear about your dx Crue. My PALS has Bulbar Onset ALS which his Neurologist says is slow for this type. He was diagnosed in Oct '15 and quit working the day of his second opinion in Dec '15.

Today he is still walking, barely, but can not speak or eat and has a feeding tube.

Early on after he quit working, we took several trips. I am thankful for that.

Only you and your family can decide what is best for you and your family.

We are here for support! Feel free to ask questions, rant or share anything you wish!

 

[diagnosed2016]

We are about two years in from symptoms but a year from diagnosis. My husband was diagnosed quickly because of his family history though. ALS was first put on the table last April and he worked until Dec but only because he had a physically demanding job that required him being on his feet for long hours and holding equipment that was heavy. If he worked at an office or something stationary he would still be working. Being retired is driving him crazy. If you can still work, and it makes you happy to continue doing so, then you should as long as it's safe for you!

 

[Vincent]

I have what's described as slow progressing ALS. My initial symptom of left foot drop started in summer 2011. I was diagnosed in 2014 and stopped working at the end of that year. In the meantime I have lost a lot of my diaphragm, FVC<50%, and have trouble swallowing. I can still walk, though not very far. My hands still work and speech is only starting to be an issue. I'm sort of in a weird place. When you are first diagnosed, you are told to pack everything in to a short time. That's all you have. So I now find myself 2 1/2 years in and still pretty much intact. I've planned my funeral, bought a plot and headstone, have all my legal/financial stuff in order. Now I have to reorient myself to the idea of having more time. It's a luxury not given to many with this disease. But I could get hit by a bus this afternoon...... It's a strange disease.

 

[Atsugi]

As a Person with ALS, the Social Security Admin will give you a few things.
First, SS Disability Insurance payments each month. Ask them what Social Security will pay to you.
Second, Medicare A (hospitals) is free and comes with the Social Security approval.
Third, Medicare B (doctors) costs about $100 monthly if you sign up for it.
Finally, if you're a veteran, there's a whole 'nother world of benefits waiting for you. So many veterans have ALS that the VA just assumes that your military service caused it.

Last word on travel--or anything else fun: You never know if and when your progression will change speed.

 

[swalker]

I am very sorry to welcome you Scott, but welcome nonetheless.

I have been told I have slow progression. I stopped work shortly after diagnosis, pretty much out of necessity.

As I was approaching diagnosis, one of my doctors bluntly asked about our financial situation. It was a sobering conversation, but critical for helping us plan for what he knew was coming.

Bluntly stated, you will stop working. It just a matter of when. When you stop, there can be a pretty big financial hit. As others have suggested, figure out what your income and costs will be when you stop.

You will be eligible for Medicare, but what about your family? Where will their health insurance come from? You will be eligible for social security disability payments after you stop working, but they may be a small fraction of what you make at work.

There are no magical solutions. But being aware of all the factors will allow you to better manage what might be a difficult situation.

Steve

 

[KimT]

It took me a very long time to get diagnosed because I was stronger than most women and I suspected something was wrong very early on. Even though I had a dirty EMG Summer of 2014, clinically I did not match up to the EMG for over a year.

I would definitely get an opinion from Hopkins, Mayo, Mass General or Duke (just my opinion.)

Mine stayed very slow progression until I fell last September. I sprained my "good" ankle" but everything started progressing. I couldn't walk much and my gait threw off my back so I was in a lot of pain and still am.

Recently, I got some of the strength in my right ankle back so I can walk short distances again.

It's been my experience that stress and injuries speed up progression. Everyone is different. This disease seems to affect everyone in a unique way and that is why it's so hard for us (or doctors) to give prognoses or compare progression.

 

[crue1965]

Thank you all for the replies.. I'm always hopeful that there's been an error in diagnosis..

Well I have some hard thinking to do in a short period.. our financial status is ok.. but with 3 kids 18 and under we all know how expensive they can be..

My right hand seems to be going quick.. I have a very difficult time washing myself completely..

Quitting work is probably close at hand..

Well thank you everyone for your support.. only God knows what the future holds..

Scott