PLS Becoming ALS

[dank]

I had my first meeting with my neurologist today since the PLS diagnosis. One thing that he said that I found particularly interesting (alarming) was that "the majority of PLS cases become ALS". This is the first I had heard of that and I haven't read anything anywhere that confirms this. So he basically said that I had PLS but I was almost certain to end up with ALS. Needless to say this is very upsetting, considering I was just coming to grips with having PLS and looking at the bright side of feeling fortunate with not having ALS. Now I'm just confused. I went from hoping for a slow progression and thinking I still had a lifetime ahead of me to being told I was likely dead in 15 years (his estimate).

I have scheduled an appointment with a neurologist that specializes in ALS but that is not until October 11.

Does anyone have any feedback in relation to this?

 

[Jim Mulligan]

I've never heard that, and I've seen four different Neurologists in two different states.

I suppose it can happen, but the "majority"? No, I never heard that or anything like it.

 

[Zaphoon]

Well shucky darn! That doc certainly didn't put a bright spot in your day, did he?

Time will tell. From what I've read, if you do not develop lower motor neuron symptoms within 3-5 years, consider yourself in the clear regarding ALS. Shucks, your doctor almost has me scared!

I wonder how he came up with the 15?

I think the figure is less than 50% for PLSers changing over to ALS.

 

[Ms. Pie]

Your doctor is a JERK. I think I'd get a new doctor were I you. Sheesh!

 

[grandmommyk]

My husband was diagnosed with PLS in March of 1995. By then he had ignored symptoms for at least 3-4 years and had almost a year of wrong diagnosis and searching for a diagnosis. She asked us to see an ALS specialist. We got the appointment in July. In between I did lots of research and felt strongly that he really had ALS. Even though he had progressed slower than normal for ALS, I felt he was progressing too fast for PLS. The specialist agreed with me. Lots of test were redone. For the first time, 2 small abnormalities showed up in the EMGs. A muscle biopsy was done. It did show slight muscle atrophy, and the diagnoses was changed to ALS.

The specialist told us that PLS was rare and it was even more rare for someone diagnosed with PLS to end up with ALS. He said there was a few documented cases. He said Rick was one of them. He told us that the life expectancy was (at the time) 2-5 years but since Rick's had progressed slowly thus far, he felt he would be on the longer end. That was 15 years ago.
Rick is totally disabled, but a lot of it happened at the beginning. In the fall of 94, he had 3 surgies for carpal tunnel and then in February 1995 just prior to being diagnosed with PLS, he had to have an emergency appendectomy. He ended up in the hospital 3 times with complications from that. I think all the surgeries and the complications caused him to progress faster in the beginning. He was using a power chair and had to have a peg tube by the end of the year. Later things slowed done. He hasn't been able to speak in 7 years but still has some movement in all areas. He does not use the bipap or vent, and the doctors feel he may still have several years left barring complications.

 

[dank]

I'm not sure what is more upsetting at the moment........having somebody confidently proclaim I might have as many as 15 years to live when he clearly is not 100% sure of this (again, he was going under assumption that the "vast majority of PLS cases turn into ALS" and basing the 15 years on some study he had about people diagnosed with PLS, that struck me as non conclusive), or having to wait until October to speak with somebody that may actually know what they are talking about.

My wife and I are not in denial about the fact that I have a problem or that the problem is very likely PLS.....but we are "in denial" about the fact that this means I will eventually have ALS and that I'll be dead in 15 years, because I have been unable to confirm that anywhere.

Thanks for the feedback....it is reassuring to know that I was not crazy to assume this was not an accurate statement. Also, thanks to everyone with PLS that has maintained such a positive outlook on here. It has been helpful to me beyond words to know that my life can still be active and productive with PLS.

 

[grandmommyk]

As I said, in my previous post, my husband has been fighting some form of this disease for @ 20 years. the last 16 we have met many people with ALS and some with PLS. As of yet, we have never met anyone else who had ALS that became PLS. I think it is safe to say that the doctor you saw didn't have his facts straight.

We actually met one man who wanted to have ALS rather than PLS because he wanted to be part of the drug trials. I think he was pretty rare too.

 

[dank]

Just to make sure where on the same page, I have been diagnosed with PLS and the doctor said it would become ALS....not the other way around.

 

[BLPhill]

Dank,

You'll make yourself sick trying to figure it out to! My story is unusual. I went to two different neuro's who diagnosed me with pls. This was done after I had symptoms for two years.

I decided to go to a third and and not tell him of my first 2 diagnosis, just to see if he came up with the same pls diagnosis. He did not. He gave me a ALS diagnosis of upper motor neuron dominate als. So, at that time I had to decide where I wanted to recieve care. I chose a university hosp MDA/ALS division.

New neuro there to. She knew only of the first two diagnosis. After watching my progression for 6 months she also changed my pls diagnosis to umn dominate als. This was at two and a half years into it.

I have got used to the idea of umn dominate als. it's supposedly has a longer survival rate. I decided to be careful and fight like hell to stay alive. I currently have very poor speech. only family members understand me..........SOMETIMES! I walk with a walker but very slowley. My arms and breathing are unaffected.

End of story? NO! On my last visit my neuro informed me that she would be changing my ALS diagnosis back to pls in Oct when I have hit the 5 year mark! imagine my surprise! I had no idea that pls diagnosis is still in the running.

I tend to disagree with her as I have some very violent fasciculations. BUT, I'm not saying a word to her. I have decided "it is what it is" and go with it.:razz:

 

[BLPhill]

Also, My balance is non existant. They say the only area I display clinical weakness is my feet. My ck test was the high end of normal so I just say mnd if anyone asks. To tell you the truth, I'm not sure any of these neuro's know and I'm sure they don't or they wouldn't switch the diagnosed so much. My opinion of it is that I have umn dominate als. but who knows!

 

[Zaphoon]

Betty, I always enjoy hearing from you. You encourage me!

 

[BLPhill]

I don't post much as I never know where I fit in. I seem to ride that thin line btwn als and pls. But the bright side is, I can continue to live in denial.

 

[grandmommyk]

Just to make sure where on the same page, I have been diagnosed with PLS and the doctor said it would become ALS....not the other way around.

So sorry, I mistyped. My husband is the only person we have met so far who had PLS and it became ALS..

 

[BLPhill]

I have been there and back again.Well...back again in oct. I have two pls's and two umn dominate als's. now in oct will probably go back to pls. Should I go with the best 3 outta 5?

 

[Zaphoon]

The best 3 out of 5 sounds good to me, Betty!