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IhavePLS

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DX UMND/PLS
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Hi to everyone,

I apologize for not having had been on the forum for quite a while, but I've been awfully busy (no excuse, as I also need to support other with my insights on this nasty disease). Therefore, mea magna culpa.

What are your thoughts concerning acute exacerbations of PLS symptoms? While I always have symptoms, on an infrequent basis, they seem to accelerate. This takes me aback, as I never quite expect it. It's a lot like the exacerbation the "pros" describe for M.S. patients...guess what? I think we have it too.

What happens? Well, I have sensations of the flu (confined to the legs), fatigue, depression, rumination ("WHY am I not well at 52 years of age?"), ataxia, dizziness, restless legs and arms at night (sleep poorly, complicating all of the above), leg pain, periodic difficulty chewing food (my jaw muscles can't tolerate it). Interestingly, I was just given a VNG test, and I have nystagmus that is not related to inner ear problems - but to inability to follow moving things - this is neurologically related, I'm told (how? I don't know)...but it is causing vertigo - and a LOT of it - nausea and some vomiting to boot.

A really weird - and disconcerting - change has been onset of pseudobulbar affect...and this entirely coincidental to uptake in symptoms. I've never been an emotional person (trust me on that one). BUT...with the recent exacerbation of symptoms, I've find myself tearing up at the oddest things, i.e., things on TV - like the Olympics - that would NEVER have bothered me like this before. I don't feel a sad or emotional response, per se, but I do tear up. And this has been consistent with the recent uptake in my symptoms. I do feel angry at times, and depressed...but not related to PLS (I've accepted long ago). It's symptom management that I want and need - you know, quality of life? The crying stuff is not depression related, I can assure you -- it comes out of nowhere - AND at the stupidest, mundane stuff. For example, I was watching a TV show the other night in which a CEO who had gone undercover was helping a worker to dolly boxes up and down city steps. I cried (HELLO? Are you kidding me?) :shock: Thank the good Lord I work from home - I can cry alone in my office, and no one can see me - because I refuse to use a webcam in live meetings.

I wonder why I simply can't be well -- feel like I want to go to the mall or friends' homes - or whatever. But my symptoms cause me to feel so awful that lying down on my bed or couch are much, much easier to handle (AND I won't find myself bawling in front of people).

I've just had a change in meds: Completely off of Baclofen (was 80 mg/day) and Neurontin (was 1600 mg/day) -- and was placed on Zanaflex (20 mg/day). I've now begun to have seizures (go figure! - fell through a plate glass door two months ago), and I'm not on Tegretol and Klonopin as well.

But there but for the grace of God go I.

Mike
 
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johnnyliverpool1

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when you think about it mike..all this weird and not so wonderful stuff umn..ers get is no surprise.....the nerves are being shot to bits so any symptom is possible...if i told anyone my long list of symptoms they would think am a nutjob..cos i think am a nut job at times.......they come and go, some of them..some permanant..some you dont see again....like goose bumps running across me chest...what fun....so its possible for your symptoms to settle down.....good luck.....johnny
 

IhavePLS

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Johnny,

In spite of your wonderfully provocative - and comical - writing style (which I personally appreciate very much), you are indeed the voice of reason. From across the "pond".... God bless.

The nature of the new UNM seems to be one in which "Anything goes....."
 

IhavePLS

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One last comment: I truly believe the ALS, PLS, and MS are all variations of the same family of diseases....they are very, very closely connected. Indeed, they simply cannot be separated...at issue is the strength of one's immune system - to fight off (like cancers) the disease....the cancers aggressively attack "X" organ because the body's immune system has been severely weakened (if you doubt this, consider that militiary members who have been exposed to Guam, Philiplnes, Japan, etc, etc. are all that ,icj more susceptible to being diagnosed with an MND?). We do not know....although there seems to be a connection....for the rest of us, it is water, food, etc., etc.? I simply cannot separate any one of my symptoms from those described by folks diagnosed with M.S. (I detest sudden loud noise, I detest heat, taking cool showers....)

Like cancer, MND attacks (yes, MND is a terrible war that plays out within our bodies), key parts of the body with different levels of aggression. What "better place" for PLS to attack than the neurological system - i.e., the center of my body -- and everything I do? Since I've developed these awful sx,, I've never been the same PERSON!

This is precisely why I believe that if I were to suggest that the recent attack)s) I refer to above was an "MS-like" attack, I suppose that I would be correct. Sometimes, I feel like I have have M.S....perhaps I do -- because it's all the same thing....the science has not figured it all out yet (trust me! they haven't!).....perhaps MS and PLS do not act to deteriorate the body as quckly as do the more aggressive forms of ALS. No matter, it is our physical imperfectin that allows some environmental characteristics to attack our neurological and defense systems. Dammit! While - as imperfect human beings - we are not intelligent enough to beat MND, our Creator DOES! He will heal us all soon.

In a few days (Sunday morning), another expedition will land of Mars. I can only pray that at that very same instant, some scientist willl have an "AHA" moment - and will recognize the relationship between viral systems and CANCER (and as relevant here -- MND).

If not today, then tomorrow.
 
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LouLou

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Mike, WOW... you really hit home with this post! It made me cry as I totally understand what you're feeling. At 54 and just in the 3rd (?) year of this, I find it all to be so overwhelming. Just wish we could get more answers to "WHY".

I have been going to a support group the first Saturday of every month that is coordinated by the MDA in Seattle. This Saturday will be my third meeting. There are patients with PLS, ALS, and other muscle diseases who attend. It is so comforting to interact with these other folks who totally understand what you're feeling. I also met a nice gentleman on this forum and we were able to meet in Minnesota for lunch while I was visiting family there. It was a very meaningful few hours of discussion.

I will keep you in my prayers as I do all of those who are affected by this disease. Thanks for the great post!

LouLou
 

AKmom

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I have delt with this for 20 years. My progression has been slow. I also go through spurts of sudden progression then level off till the next time. I would not say I get better as time goes on, rather I adjust to the new limitations that have happened. The biggest key is to not stop living and doing what you like to do. Who cares if you get weepy in public. With pls you have to grow a thick skin, just like any debilitating disease. My doc is amazed at how much I still accomplish even though I prefer my legs to be up and be reclining because its more comfortable.

I need to ask, did you taper off you baclofen or did you just stop taking it? If its the latter, then most likely that is why you had a seizure. You need to be careful about coming off meds too quickly. Also is the neurontin working for you? That one is another med that works for a while then you have to up the dose to keep it working. When you get to the max dose and it stops working, you need to come off it slowly too. And its a "female dog" to come off it! I have gone through two cycles of that drug in the past 20 years and I have decided that its not worth taking for getting a brief relief and then go through the DTs. But everyone is different and maybe you will not have that problem.

Do you have a power chair or scooter yet? Those might be useful for you trip to the mall, and if anyone is concerned about you crying, just ask them if they have seen the prices in the stores! ;)
 

olly

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joyce bet me to it and hit the nail on the head.........from coming off such a high dose of baclofen suddenly is what probably caused the seizure,this is listed in the paper you get in the box.

also,i am like joyce in progression ect.......plodding along slow then hit with a bad episode that can last weeks or months.

i agree with everything you say,i was convinced i had ms as it felt like ms episides..........in ms it effects both white and grey matter with us its just grey matter..........we have some of the physical symptoms of ms just not sensory.

at 31 i was way too young to get this desease ,was so active and i feel i have been cheated out of a big part of my life........but i always say theres people far worse off,make the best of what you have and be thankfull.
having a faith helps so much to balance the mind,as a christian i too believe in gods new order were we are all perfect with no illness or sin.

hope your feeling better soon.
 

Tokahfang

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I think PLS really has exascerbations, though much more rare in PLS than something like MS. However, since our neurological systems are already compromised, I think we have also have a tendency for our stress to run into our nerves and give us functional exascerbations when a normal person would get a migraine or a stomachache.

Hey Olly, if it makes you feel better, maybe you were too old to get PLS. ;) Having onset with hsp/pls in my teens, I never got a normal adult life, so I don't miss it. To me it looks like an interesting but foreign country. It may be a better deal, like having diabetes or hypoglycemnia so young you never get a taste for sweet foods, versus a person trying to adjust their lifestyle later in life.
 

olly

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so true becky,thats why i think theres others so much worse off than myself.
 

AKmom

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DX UMND/PLS
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so true becky,thats why i think theres others so much worse off than myself.

I agree Carolyn. I have had it for 20 years, I was in my 30's when the first symp toms appeared but now its like i am still doing things that others who have had it only a short few years are worse than I.
 

IhavePLS

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All, thank you - as always - for your kind and considerate responses. I'm overwhelmed - just sick and tired of being sick and tired. I, too, believe that God's new order is soon to come, and I wait eagerly for that wonderful day on which "pain, sorrow, and death will be no more." What a wonderful time that will be. The devil challenges us all in different ways -- he knows how he can best undermine our Christian values. For me, this has been the big one, no doubt. But I will win.

Hi Joyce, I tapered the Baclofen very, very slowly -- in fact, over a month and one-half...and (up to today) ('ve still taken 10 mg. when I had extreme spasticity and pain. And your suggestion concerning store prices was simply hilarious! Thanks for the laugh!

Today, my neuro called (because I complained about spasticity and pain), and he's asked me to increase tizanidine to 8 mg qid....that's a total of 32 mg. Of course, I'm going to increase it more slowly than that (neuros don't know very much, do they?)....

Thanks all. You're all wonderful.

Mike
 

IhavePLS

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LouLou, thank you for your kind comments. The odd thing about all of this is that I am completely unable to explain my symptoms -- I've learned to stop trying (mostly anyway) because unless others have experienced the pain and spasticity that is dealt out by PLS, they'll never understand anyway. Thank you for your response as well -- as I see it, one of the strangest things of all is that even though we do not know one another well - nor personally - we DO understand the symptoms that come with this dreadful disease. Those closest to us do not, they cannot. And God forbid that we would ever expect them to....never, ever! The bottom line: I'm glad it was me -- and NOT my wife.
 

notme

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Ah Mike, I can so relate to you, and I don't even know for sure what is wrong with ME.

Two years ago, I was teaching nursing assisting. -- with difficulty. Ten years ago, I was an EMT and lifting hurt people.

Today, at 52, I feel 90 most day. Have no energy. Legs are shot. Arms are going fast, back is destroyed from 20+ years as an EMT, lungs are shot and use O2 and machine for breathing at night.

Even five years ago, I was relatively healthy and could do things (up til my stroke)

I am with you--I think the three are all auto-immune in nature and connected. But hey, I'm not a scientist, so what do I know. I just know I have 'good' days and bad days. Good weeks and bad weeks. Used to be the 'bad' were further apart. Now, the good are nearly non-existant.

I have major issues with emotion. I'm a basket case at the slightest thing now-so not me. Heck, I was a cop, an EMT and a teacher in all my varied career paths. I couldn't do any of them today with my emotional roller coaster of a mind. I can get set off by anything.

I like your line "There but for the grace of God, go I". I've used that line for years.

Could be worse, I know--but could be a heck of a lot better. A year ago, I could push the buttons on a microwave!
 

IhavePLS

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Notme,

And I am able to identify precisely with what you've said below. In fact, I think you've just put into words how I feel -- which, as you know, if nearly impossible for PLSers.

Five years ago, I needed back surgery, but I generally felt well...even afterwards, I jogged several times, and used to walk quite a bit. After the "recovery", I continued to have symptoms in my legs (over a year beyond the surgery). The neurosurgeon said that my continuing symptoms were unrelated to lumbar or nerve pain (meaning sciatic), and advised me to see a neurologist. Of course, I did so right away - and the proverbial ball started rolling.

Since then, I've never felt well -- I've always said that my body has betrayed me. I'm angry and frustrated that doing the simplest things (picking something up off of the floor) have become as laborious as running five miles in 2007 or so. I am also 52, and I could never have imagined that - at my young age - I'd feel like this day after day after day. The symptoms never go away - they worsen significantly from time to time, but they I never feel well. In fact, my existence is like have a chronic flu (odd, but that's the best way to characterize the pain and discomfort in my legs).

Sorry to complain, but your post was right on the money. It describes precisely how I feel. I'm not afraid of my diagnosis - it is what it is. I HATE the symptoms. I DETEST the symptoms. I want to have ONE DAY during whcih I feel well -- physically. And ONE DAY during which I feel happy.

And by the way, I would wish for both on the same day. :-D

Thanks for your postings, all!

Mike
 

olly

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AMEN! after having pain 24/7 for 13yrs,i always say if i woke up one morning with no pain i would be worried........as i'd probably be dead:shock:
 
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