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IhavePLS

Distinguished member
Joined
Apr 17, 2011
Messages
279
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
City
SW
Hi to all,

New member here - I was responding to another post, and thought I went off-track so badly that I'd better post an initial thread instead (sorry)!

I am a 51 yo male, recently diagnosed with PLS - although I've had symptoms now for a few years (perhaps more). PLS is a miserable condition - one that has truly (negatively) impacted my life. While the spasticity and pain in both of my legs (and now my arms) does seem to ebb and wane, both are usually always there...only in varying degrees at different times. I recently began to develop some pretty severe neck pain w/ spasms - and pain down both arms. Narcotics don't seem to do a lot for me (at least I don't think so).

I wonder if anyone here ever experiences a "fullness" in their legs - and sometimes feelings of malaise somewhat like having the flu? I get this often along with spasms and pain. The problem with managing pain is that I never know where and when it'll show up. What does seem to work for me - although for ~20 minutes or so (when sx. return with a vengeance) are hot baths.

I'm glad I found this forum!

Mike
 
Welcome to the forum, Mike. My husband has ALS, not PLS, so I cannot really address your questions, but there are really friendly and helpful folks on here who will have some answers for you. This forum is a fantastic resource. I just wanted to say hi..... Jo
 
I have been diagnosed with PLS and the flu - like feeling hardly ever goes away.
 
Hello Jo and Northern Dancer, thank you both for your replies (Jo, I hope your husband is doing well) - I always feel as if I have malaise - that flu-like feeling. Sometimes more profoundly experienced than others....but always there. Up to 2-3 months ago, my symptoms were largely in my legs. Recently, they've found their way into my arms and hands. Very weird progression path. I expect that everyone's "journey" is different (I wish I had a more negative descriptive for my personal trip than use of the word "journey"). I haven't had any speech problems, just spasticity, hypperreflexivity of the knees, Babinski, knee clonus, unable to toe tap, and pain (and that flu-like malaise like I used to get when I had a viral syndrome or flu with a fever).

All the best,

Mike
 
Mike, Welcome to he forum - sorry for the reason the brought you here.

My case is presumed to be PLS with symptoms being primarily continual cramps, muscle spasms and stiffness. I've had what I'd call "bouts" of that malaise feeling that is accompanied with fatigue. I can only work a few hours a day when it hits and am thankful it hasn't happened in a while.

I've had periods of spasticity so bad that bending, stooping and kneeling could only be down in super slow-motion. My neck gets so stiff that it makes driving very difficult. Oh, I can't leave out the bi-lateral frozen shoulders, either. My left shoulder recovered by the right suffered too much atrophy and is somewhat toast.

I'm pretty stupid as I go about my business as if nothing is wrong which means I regularly over do things. Well, I have little choice - bills to pay and all of that...

I get some benefit from baclofen and at the end of the day, I find a glass of red wine helps a bit, too. I was a tea-totaler for many years prior to this hitting me. It seems to never really let up.

Nice to have you onboard, Mike!

Kim
 
Welcome Mike! Sorry there are problems that have brought you here but we certainly understand. I am still having conflicting reports on if I have PLS or not so not sure how to say that other than I have given up on the neurology docs as being that no 3 or 4 can never agree on anything.

However, I have the spaticity, muscle cramping, pain, weakness and fatigue as well as the "not feeling good" feeling that never go away. I also have atrophy and decreasing strength in what started first in my right leg and over the years has migrated to include my feet, both legs, back, hands, arms, shoulders and a little in my neck and jaw.

So, between baclofen, tizanidine, and occasional valium and narcotics, I maintain to be as active as I can be. Looking soon into purchasing either a walker or wheelchair or power chair or scooter....just have to decide which will benifit me the most and be used the longest for the money.

Look forward to getting to know you!
 
Ask your doctor to try one of the forms of modafanil - Provigil or Nuvigil. 100 mg/day kept that flu like fatigue from me for a year, and 200 mg/day does the trick for me now. I don't mind the pain or disabililty so much, but I want to have a day. Provigil does that for me.
 
hello mike:D...........welcome to the forum.

i have been a pls'er for over a decade,after several years i was finallly diognosed in 2007
yes i too have had that malaise feeling in the past,felt a little warm like i had a temp( and told my neuro this ofton)
also fatigue was really bad in the first few years.

good news the temp/malaise feeling and fatigue is very little after a decade.
hopefully it will be the same for others as time goes on.

after a decade pls has taken over all my body but i can still get about (unless real bad day)around my home,potter doing little jobs.
i can no longer walk much outside now so i have just bought a mobility scooter.

what meds do you take? are you taking baclofen?

we are a great bunch here,any questions or help just ask.
take care.
caroline:D
 
Thank you all very, very much! If I can say it this way, I'm glad to hear that my symptoms are not an entirely unique experience (that is by no means said to imply that I'm happy to hear you have similiar symptoms at all - I wouldn't wish this on anybody)!

I am taking baclofen. I also took tizanidine for a while, but I had some pretty scary nightmares from the drug - which stopped after it was discontinued. I do have to watch my blood pressure, as medications do make me hypotensive at times.

Tokahfan, I will certainly check into modafanil - thank you for the recommendation.

A question I neglected to ask: Do any of you have restless legs and/or arms syndrome? I have not read of a clear connection between the two conditions, but I very often have restless arms (I take ropinirole for that problem). Restless arms serves to complicate my symptoms all the more. But I can tell the difference between the restless creepy crawly feeling one gets with RLS and RAS (restless arms syndrome) and the arm sx. brought on by my PLS. I read that there may be a correlation - but only in a Google Book on neurological disorders.

Thanks again to all!

Mike
 
mike,what do you mean by restless?
i have myoclonic jerks (abnormal movements) which will send a leg twitching or kicking and it also effects my arms and right side of torso.
myoclonic jerks are a umn symptom.
sometimes a few seconds before it happens i can get a uncomfortable feeling.
my myoclonus did used to be very bad in the early years but has calmed down alot which i put down to a decade on baclofen.

i too have hypotension and can have blackouts,was taking another med with baclofen and it was making it worse but stopped it and its been alot better since.
 
Hi Olly,

By restless, I am referring to something similar to Periodic Limb Movement Disorder (PLMD)...but this occurs in my arms mostly now (used to occur in my legs and never in my arms).

I will look up "myoclonic jerking" - as this may be my problem (and not Restless Legs/Arms syndrome)! THANKS!
 
Cause details for Myoclonus: Although some cases of myoclonus are caused by an injury to the peripheral nerves (defined as the nerves outside the brain and spinal cord, or the central nervous system), most myoclonus is caused by a disturbance of the central nervous system. Studies suggest that several locations in the brain are involved in myoclonus. One such location, for example, is in the brainstem close to structures that are responsible for the startle response, an automatic reaction to an unexpected stimulus involving rapid muscle contraction.

The specific mechanisms underlying myoclonus are not yet fully understood. Scientists believe that some types of stimulus-sensitive myoclonus may involve overexcitability of the parts of the brain that control movement. These parts are interconnected in a series of feedback loops called motor pathways. These pathways facilitate and modulate communication between the brain and muscles. Key elements of this communication are chemicals known as neurotransmitters, which carry messages from one nerve cell, or neuron, to another. Neurotransmitters are released by neurons and attach themselves to receptors on parts of neighboring cells. Some neurotransmitters may make the receiving cell more sensitive, while others tend to make the receiving cell less sensitive. Laboratory studies suggest that an imbalance between these chemicals may underlie myoclonus.

Some researchers speculate that abnormalities or deficiencies in the receptors for certain neurotransmitters may contribute to some forms of myoclonus. Receptors that appear to be related to myoclonus include those for two important inhibitory neurotransmitters: serotonin, which constricts blood vessels and brings on sleep, and gamma-aminobutyric acid (GABA), which helps the brain maintain muscle control. Other receptors with links to myoclonus include those for opiates, drugs that induce sleep, and for glycine, an inhibitory neurotransmitter that is important for the control of motor and sensory functions in the spinal cord. More research is needed to determine how these receptor abnormalities cause or contribute to myoclonus.1

Symptoms of Myoclonus: The myoclonic twitches or jerks are usually caused by sudden muscle contractions; they also can result from brief lapses of contraction. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. 1
 
Like Caroline (Olly), I had the Myoclonus jerks also, alot in the early years. But I have been suffering for over a decade and very rarely get those now. I do have what I would classify "restless leg" that I get when I lay down or sit for extended times. My legs feel so uncomfortable and hurt, I cannot even tell you exactly the feeling. Kinda intense achy and only massage and meds will releave it slightly enough to be tollerable. If I happen to have a busy day and was up on them too much it can bring me to tears at night the excrusiating feeling. My arms can get that way to if I used them too much too. But with the legs I get it to some degree every night or sitting at the computer too long. Which is why at night I add the tizanidine to my baclofen and if that doesn't settle it down some, I will add a valium. But that is rare.

I also have to be careful of hypotension, especially going from laying to sitting to standing. I have a sudden drop during these that cause me to be really unbalanced/dizzy.
 
actually after reading my last post i do understand the feeling i get just before a jerk,especially in the legs.
its uncomfortable and feels like a sudden surge of energy/electricity that tightens the muscle,just a second or two before the jerk.
 
Hi Mike,

I'm about two years younger than you, and was diagnosed with PLS about 8 years ago.

Yes, like others here, one of my symptoms is RLS.

Yes, PLS sucks. It robbed me of most of the activities I enjoyed in life.

A drug that I highly recommend which doesn't get much discussion here is Low Dose Naltrexone (LDN). Google it if you are interested. It's much used by MS'ers.

I've been taking LDN for about 3 years now, and I believe, though can't prove, that it has slowed my disease progression, and kept the "Cog Fog" at bay.

About six months ago I asked my Neurologist for an anti-depressant. He put me on Effexor, which almost immediately stopped the suicidal thoughts I've had daily for the last several years. Another, unexpected benefit of Effexor is it dramatically lessened the constant "uncomfortableness" of PLS. Prior to Effexor, my legs and ankles and feet were always bothering me. I could never relax. Now with Effexor, that constant uncofortable feeling is much less.

This forum is a good place. As they say, Misery loves company, and everyone here somehow manages to look on the bright side.

Jim
 
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