Was wondering

[Moonwolfy]

I am newly diagnosed with PLS..symptom onset was 2 yrs ago. My neuro referred me to be evaluated for a Peg feeding tube. I do sometimes have issues swallowing but not all the time. I can't speak at all and use a iPad with a speech app. I initially lost a ton of weight at onset of symptoms but have gained it all back in past year..probably due to not being as active and mobile as before and too much fast food. Was wondering if it's common for those diagnosed with PLS to be evaluated for a Peg? I've been researching everything I can about PLS, ALS, MND, etc. I know PLS is rare so not as much info out there. My neuro seems really great but he kinda just threw out referral and term Peg like I'd know what was and when I asked quickly said feeding tube. I was kinda in shock and freaked a bit. I don't think I need at this time but was wondering if anyone with PLS has a Peg and if it's common as I thought this was more for those diagnosed with ALS? My evaluation is Tuesday and I'm kinda nervous. Thanks

 

[Tokahfang]

PLSers tend to lose their ability to eat in a different, less immediately disabling, order than PALS, but if you have lost your speech than it is an eventuality you have to face. It is fantastic that your doc is thinking ahead for you there, it often takes longer for PLSers to be approved for them by insurance. Having a PEG in doesn't stop you from eating while you still can, and allows you to supplement your eating when you need to.

You are a fast progresser for someone with PLS, so you are going to hit the PALS-level stuff a lot faster than someone with an insidious progression. Having a proactive neuro will be a ton of help. You may eventually need practical advice beyond what any of our current PLSers can provide, in which case you should feel free to politely ask the PALS forum - good people, and they understand that we're all in this together.

 

[momap53]

Moonwolfy, check out Rose's profile page. She has some good info about her peg, she even has photos! Several of our members have them and will be happy to answer answer any questions.

 

[Moonwolfy]

Thank you Beky for responding. This is all so overwhelming as I only was officially diagnosed a couple weeks ago. I knew the past 2 years something was seriously wrong with me but no doctor would take me serious despite my using a walker and loss of speech at age 33. This new neuro is great and I'm grateful. However, with research and reading over old threads I've seen people mention that PLS isn't usually officially diagnosed until 4 to 5 years after symptom onset due to possible progression into ALS. This concerns me as like u said my progression has been fast. I know u mentioned the PALS forum which I appreciate. I was wondering if u or anyone else you know has attended in person support groups? Obviously none for PLS but there are some near me for PALS. However, I don't know if this would be considered inappropriate like I was intruding since I have a PLS diagnosis. I just been feeling very isolated. Thank u.

 

[Moonwolfy]

Thank u Deb for responding. I will look into that.

 

[Tokahfang]

Fast progression doesn't equal ALS - there are fast progressing PLSers, they just aren't the norm. If your doc diagnosed you with PLS, that means ALS is ruled out for now. (It doesn't guarantee the future, but no one can!) I had an ALS fear once when my insidious progression turned into a very fast one, but it leveled back out. You could even plateau and stay at one level of disability for a very long time. Keep hope!

 

[Moonwolfy]

Thank you again Beky. I think I'm just feeling a bit down and anxious. I have not really had anyone to talk to as my friends and family often get confused and really worried. So I often bottle my worries and frustrations up and act like I'm completely fine and ok. I think a lot of it is a lot of anxiety over my upcoming social security hearing in 2 weeks as well. Just a lot all at the same time. Thanks for understanding

 

[Tokahfang]

Hey, we've all been there.

I've found my friends were much happier when I was honest with them. This is a tough thing, because some people just aren't interested in being friends actively with someoene who is never going to get better. But since we're not, those kind of "friends" aren't helpful to us anyway, best to know earlier than later. The other friends, the ones that stick with you, are a huge resource, especially for people our age. (I'm just two years younger than you.) The more honest you are with them, the better they can know what to do to include you in things, how much support you need physically and emotionally, etc.

Family is tougher, and only you know yours.

I hope the support group is a big help for you!

 

[old dog]

Moonwolfy - Like you, I was thoroughly shocked when my neuro suggested looking into a feeding tube. She explained that it would be safer to have the procedure while I was otherwise relatively healthy. I am a determined eater and, rather than losing weight, am fighting to avoid gaining too much which is tricky with inactivity. Because I have great difficulty speaking and the effort required makes me sound as if I am not getting enough air, the neuro thought I was oxygen deprived. She recommended a sleep study conducted by a pulmonary specialist. Also, my face and lips are affected, so I am unable to make a seal on the hand-held spirometer she has me blow into. Consequently, the spirometer test does not show good results.

After I passed the sleep study test with flying colors (high blood oxygen levels all through the night), the neuro feels I can wait to be evaluated for a Peg. I have difficulty eating occasionally when I am overtired. I have to eat slowly and take small bites but have no diet restrictions. Most of my eating problems seem to be because the tongue doesn't work properly to move food around for chewing. I can swallow large pills or pieces of steak; the trick is to get something to the back of my mouth.

 

[billbell52]

Weight loss is a major concern for ALS patients. Every time I go they check my weight to make sure I am not losing any. They talked about a peg tube on numerous occasions but I have resisted since I can still every thing. I have to eat slow and certain foods can cause me to cough. This is a good video on nutrition for ALS patients. It has useful info.

http://static.mda.org/services/videos/nutrition/FlvPlayer.swf

 

[Moonwolfy]

Old dog and billbell52 thanks for responding. The video is helpful thanks. I went for my evaluation and the doctor was very nice and understanding. He said he was willing to put a Peg in due to how fast I have progressed in only 2 years. I told him I wasn't sure that this was overwhelming as I have only been diagnosed for a month. He decided to refer me to a speech therapist to do a swallow test to see where I'm at officially. It was good to at least find out more information and options. He said we can always put a peg in at anytime so that if symptoms suddenly get worse just to call him. This put my mind at rest knowing that I don't have to feel rushed.

 

[notme]

The thing to remember folks, is that a feeding tube, or PEG, does NOT mean that you can not eat normally! You can eat as long as you're able. BUT--it IS always better to have the procedure done if it's needed earlier rather than later, especially if there are any associated breathing issues, as this can hinder use of anesthetic.

They make a 'button' style for when it's healed, so it's not going to be obvious to the world that it's there. choking is dangerous---very dangerous--as aspiration is a real risk.

In ALS, it's respiratory infections and resp. failure that normally are the killers, not so much the disease itself. With PLS, if the symptoms are progressing to bulbar region--the same respiratory risks may be present.