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okiemom

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Wagoner
My husband is 43 and has pretty much been diagnosed with PLS. They are doing a spinal tap as a final step to ruling everything else out, but the neuro is pretty confident that it is PLS. I have a few questions that I was hoping someone could help us with.

1. Fatigue-He has extreme fatigue, even upon waking in the morning. Sometimes it seems like he's sleeping soundly, but still wakes up exhausted. Other nights he doesn't sleep as well. Anyone else have this problem and if so, what has worked, if anything, to combat it? I'm sure the fact he is a PT who is still working full-time as much as possible isn't helping, but I thought I'd ask.

2. Pain-What works for you? He takes Baclofen 2x/day which has really helped reduce his spasticity but his pain hasn't really reduced at all. He has hydrocodone to take when it's just too much and he can stay in bed, but it would be great to find an alternative.

3. Progression-My husband has deteriorated from walking fine in October to needing a 4-pronged cane everyday and a wheelchair/scooter where lots of walking is involved. We think this whole disease started, though, several years ago and the doc does, too. We can now explain things that no one could explain before. Still, he's declined so rapidly in the last few months that I just wanted to see if anyone has experienced this kind of change in symptoms in a disease that is supposed to progress slowly. He's definitely leveled off with as I said before an improvement in spasticity due to the baclofen.

Thanks so much for any help you can give. We're trying to figure out ways to help him be able to do as much as he can, especially since we have 2 boys ages 9 and 13. Thanks again! :p
 
Welcome, but so sorry you are here. I dont have PLS but bulbar, so I cant talk about progression, but I too have a lot of pain..I take baclofen, a dose which suits me..search for baclofen and see a lot of opinions on it. The other thing for pain, worth a try is to drink a good Indian Tonic water..preferably schweppes as it has real quinine in it, not flavouring..I drink it all the time and it does help somewhat.
The thoughts of many will be with you and your family, especially as you have a young family to deal with as well.
 
Okiemom,

My boys are the same age as yours. They are my wing men when we go out - assembling/disassembling my scooter, holding doors, handling cash, etc. My Kids feel empowered when they are allowed to help and they are better than anybody else at doing so in a way that doesn't make me feel diminished.

Once you have private messaging priveleges, touch base with Frizzel. She's been dealing with PLS for several years and is happy to chat.
 
hi

welcome,sorry to hear about your husband.
i have had this 9yrs now.

1) i used to get terrible fatigue in the early years,it would last anywere from a day to weeks.
sometimes on odd occasions so bad i would be bedridden for a week or two.
also i find heat causes fatigue,i can no longer sit in the sun if its too warm/hot.

2) i take baclofen and ammitrityline which is really an antidepressant but is used to control chronic pain as it works on the nervous system.
ask his neuro about this or something similar.

3) i have found in my case and many others the first years tend to be more progressive.
after 8yrs on baclofen for the most part my spacticity is minimal (unless i have a severe episode),the problem is the baclofen as with the spasms weaken the muscles over time.
i can still walk round the house but would need a chair or scooter to go out for a distance.

i think theres nothing to worry about as it does sound like your husbands progression is normal (if he has had it for several years like you think)
is it just his legs?
i started in my legs and it has slowly worked up to bulbar(bulbar started 2yrs ago)

please ask us anything your not sure of,we are always here to help:)
 
Ask your GP to schedule your husband for a sleep study test. Tell him (her) how he doesn't wake up refreshed and that he is so tired even after sleeping. He likely needs a Cpap or Bipap machine to help him breathe while sleeping. If so, this is a wonderful cure and will give him much of his life back. If he already has one, maybe the settings need to be changed.... or that he needs to wear it while awake, at least some of the daytime too.
My husband has a bipap and has never had trouble with it since day one. Many many people have one for simple sleep apnea.
 
Thank you all so much! I'm taking notes and passing this onto my husband. It's so comforting to know that even though this is a rare diagnosis we have others to turn to for advice. Of course, I wish that none of you or my husband needed any of this information in the first place. I will be keeping you all in my prayers.

Jennifer, I'll have to get the tonic water! So many have given or offered things and we're trying whatever the doc says is ok. The more natural the better! We've already emailed the doc about possibly upping the baclofen a bit.

Liz, isn't it wonderful to have such great helpers? I don't know what I'd do without my guys, especially before baclofen. My husband's balance was so bad that he had several bad falls, even when using a cane. My oldest had to help me lift my husband more than once when his legs simply wouldn't support him.

Caroline, my husband is mostly affected in his right leg right now with some involvement in the left. He's sometimes has pain in his arms and has begun to notice more frequent fasciculations in them. You have made me feel better about the rate of progression. We've had him to doctors off and on over the past 5-6 years for a variety of things that couldn't be explained. I guess he just hit a time of rapid progression that finally led us to a diagnosis. It's been a blessing in one way just to finally know, especially since he kept thinking that it must all be in his head. Poor guy!

Marjorie, he actually had a sleep study done 5-6 years ago and was diagnosed with restless leg syndrome. We figure that along with other strange symptoms that went unexplained might have been the beginnings of his PLS. He passed the breathing test at the MDA clinic with flying colors, but my husband had great lung capacity due to his being a cyclist for many years. We're really not sure that he hasn't declined a bit since there's no baseline to go by from before. I guess all we can do is watch from here and see how he does the next time they test him. He wakes up a lot at night, but I think it's the pain that is waking him. He doesn't snore. Maybe I should let him try my machine one night if he will and see what happens. It couldn't hurt.

Thanks again for your eagerness to help and support us!
 
Just to add a little info. Rick doesn't snore at all either, but he was still diagnosed with severe sleep apnea at first. Then we realized that he doesn't have a lung problem, but his diaphragm is weakening. It is still the pulmonary specialist that needs to diagnosed and find out why he doesn't sleep well. If you can sleep, it will make your days so much brighter and stronger!

Also if it has been 5 or 6 years since he had a sleep study, it is time for another.

Rick was a tournament tennis player and that doesn't help his breathing anymore.... not with ALS.

I hope you have great success as you sort all these things out. Keep telling and trying and testing and you will eventually get something to set your mind on. Good luck!
 
Okie, my husband has been recently diagnosed (by elimination of course). No HSP, No MS based on 4 yrs worth of neuro visits, MRIs, brains scans and lumbar puncture. His symptoms began 4 yrs as tingling in his left foot. Today he needs a cane around the house and wheelchair when more walking is required. He does get very fatiqured throughout the day. He works from home and sits in front of the computer a lot and this wears him out as does shaving and showering.

He has a tremendous amount of lower back pain but will not take anything for it...he's ok with tollerating the pain for now. He does take baclofin, 10 mg in morning and afternoon and takes two tablets at bedtime which helps him to sleep better.

All his symptoms are in his lower half...his legs feel very heavy and its hard to walk. His left leg will not bend and he can not lift it but 5 inches from the ground. Right leg is still pretty strong which enables him to continue to drive.

I am glad to hear that your husband is still working. We are trying to keep that going as long as possible but realistically think his ability to work it will come to an end on the next 12 - 18 months.

His progression has been continously steadily. I describe it has a dripping faucet. Every 6 - 8 weeks he has a bigger decline then its back to the dripping faucet....so we know that tomorrow will not be as good a day as today so we appreciate today!

Best of luck to you and your husband. We are all here to help. This site has been a terrific coping mechanism for us.
 
Hi Liz...Just checking in

First of all, I LOVE to hear your kids Liz, are supporting you in a way that you know how valuable you are. I hear you to have people help without you feeling like you're so unable to do any thing for yourself. Even if physically we can't like we use to...Hey, we're our kids cheerleaders AND it sounds like you have some pretty awesome kids.

Anyone diagnosed with PLS is welcome to PM me. Thanks for the good word Liz. I think of you every so often. Good to hear you're still getting out with the family.

Having had PLS for about 12 years now, I've learned a few things that work for me and that I wouldn't mind sharing with others diagnosed with PLS as well. Maybe we can learn from each other.

All the best!

Frizz
 
Hi folks... I just did a search for restless legs as an ALS symptom...

up until now, my mum's walking has been unaffected by the disease. she has weakness and muscle loss in both arms, the right is a little more affected than the left. her speech is slow and a little slurred, but totally intelligible. this last week she has been complaining of "restless leg" -- when she is sitting still, she can't have them still and has to move them around. She was also kicking the quilt up in bed -- she thought it was annoying her legs. i'm wondering if this is the first signs of leg weakness. i was hoping and praying that her legs would be spared for a good long time to come. but it seems like it's going to be relentless on her. we're trying our best to keep it together, but i feel like she's fading a little bit everyday and i'm petrified. i think it might be faster than i thought.
 
Okiemom, so sorry that this has happened to your family. :[ You will find fabulous support, information and assistance in this Forum! My husband was diagnosed in July 09 and we also have a 12 year old son so I can truly relate to your journey. He definately needs a Sleep Study done ASAP. His inability to blow off his CO2 is a huge cause for fatique, headaches when awakening and lowers his pain threshold. Another fabulous forum that Brooksea directed me to is patients like me. Have you contacted the ALS Association and the MDA Association? The ALS Association had been a literal lifesaver for me! There is also a support group of facebook for children of PALS and it is called KALS. My son has felt very supported by this group. The Canadian ALS Association has tons of great information available. Have you applied for Social Security Disability? DO IT ASAP as you have to wait 6 months and there is no retroactive payment for those 6 months of your husband's MONEY! We are all here for you and yours :] Sending you hugs and will add you to my sunrise prayers!
 
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