My story about PLS

[mookyred]

Johnny,

Yes, I have spasticity, but it is not bad. The cold or any stress stiffens me like a board.......not an ironing board...which your wife probably has and you probably make her slave over that too. I just don't understand all this pain everybody is having....I tend to think some are misdiagnosed. Maybe I just don't know what I'm in for in the future. Confused in Florida

 

[AKmom]

Mooky I have pain that is a different problem than the pls. My pain is from a flamatory process. My body hyper reacts to inflamation from injured or over used muscles, bones, and even skin and other organs in my body. It was diagnosed'ed by two neurologist that thought I had Rhuemitoid arthritis but both docs have changed their minds and said its not RA. They both ended up saying they think it might be poly arthritis but they really were not positive on that either.

Since then my doc has ruled out the poly reumatica. And it doesn't fit the firbromyalgia according to my doc. But we have discovered that the pls makes it worse, because of tight spastic muscles that put stress on my tendons and cause inflamation such as tendonitis or torn ligaments (which I am dealing with now on my right thumb which was put in a cast yesterday).

Also, I get cramps like charley horse camps. Where the muscles will all the sudden seize up into a tight twisting knot and can make you stop whatever you are doing and cause you to drop if its in a muscle that supports you standing. I can get these in my tongue too. They are very painful. I have had bloodwork done to make sure that my vitamin levels are good and that these cramps are not caused by a deficiancy.

If you do not have pain then that is a blessing! I have tried different therapies to try and change the process of inflamation with no effects. The most I can do is damage control with ibuprophen when the pain gets too much or like in the case of my torn ligaments in my thumb, immobilization followed by physical therapy.

Sometimes the pain is a constant like in my hips. This is from miss alignement caused from years of chronic spastic/tight muscles and is a direct cause of pls.

 

[johnnyliverpool]

from what i gather..we all hve a certain level of muscle tension, called muscle tone..without that tone we would fall down like a rag doll while at rest..when motor signals are interupted like in mnd, stroke and other reasons...that control is lost and the level of muscle tone is increased..that increase causes pain, i think.....am no expert or even a beginner, but i would be interested in everybodies take on this......johnnyseriousforachange......

 

[Zaphoon]

Johnny, I think you are spot on! I can attest that there are times when my muscles are so stiff, it's as if they're tied up in knots and this is never a pleasant or painless experience. Another way to describe it would be that a switch is thrown on in my brain signaling the muscle(s) to tighten but doesn't tell them when to stop. So, the simply knot up.

I say "Shucky Darn!" a lot these days.

 

[johnnyliverpool]

hi zaph...yep..imagine tightening your fist, permanantly....its gonna get stiff and painful for sure....maybe am a genius and i worked it all out?........naaa!....loves jonno

 

[mookyred]

aka mom. and all..I really am getting an education on this site. I thought I knew a lot but I'm finding that I may not know as much as I think. I get the muscle knots sometimes and hurt like hell. I get them when I don't keep up my exercising. I swear by physical therapy, especially aqua therapy. When I walked into physical therapy in Florida I had that stiff gait and looked like the local drunk. When I left, I was lifting 60 pound of weight on my quads and calves. Now, I had a physical therapist that was relentless in getting me strong. When I stopped, and got lazy the muscles got weak again. Now, went through my depressive state for about a year, and I'm weak because I didn't exercise at all.
I'm going back to physical therapy. the Mook

 

[LLOG]

My mom was just diagnosed today with PLS .. it has being a long journey for the last 2 years trying to get her diagnosed.. first were we were told also she had a "sub" form of MS as all the tests i.e .. mri and LP were clear. She is in a lot of pain, very hard to walk, dragging of one leg, her quality of life is not very good. Her Neuro has not put her on any meds except a pain killer that was perscribed by her GP. Glad i have found this site as we are very ignorant to the illness and am trying to read as much as possible about this illness. thanks for reading and i wish you all the best

 

[johnnyliverpool]

llog...yep love, pain and one sided weakness sums up the main symptoms..pain killers lose there effect eventually and there are side effects...for me...gentle exercise does good...rest does good....but too much of either , no good...find a balance that helps the most i would say..there ain"t much the medics can do to be honest..managing her syptoms is the best way for her...actually the first two years were my worst..because i had"nt slowed down..she could improve...god bless ......johnny liverpool

 

[Zaphoon]

Muscle stiffness causes me "discomfort"; sometimes intense "discomfort". There! I didn't use the "P" word!

I took my empty bottle of cramp candy (baclofen) to Walgreens last week only to learn they couldn't refill it. It had to be refilled by the V.A. since the V.A. hasn't authorized Walgreens to do the refills. What was I thinking? I wasn't!

Anyway, my bottle of gabapanten has been sitting by unused. Now's as good a time as any to see what effect it might bring to my "discomfort".

 

[Alyoop]

God bless our little bottles of baclofen. Was sitting in the airport yesterday after a GREAT MS meeting, waiting to fly home. In walked all the neuros that had been talking at the meeting. Here I am wanting to ge "pee" went to stand up and missed the first attempt. Realising I had got a bit stiff, I was panic striken at the thought of walking past them. They know I have an issue, but to be watched ,as I know I would, was bad for my anxiety levels , to say the least.
I had my precious bottle of Baclofen. Popped 2 waited 20 minutes with my legs crossed, (hopeing not too sneeze), before rising and limping musch less, across the lounge.
Arghhhhh why can I not get over this embarrassment and just let it be!

Zaphoon I do hope the gabapentin helped your discomfort. I am so relieved I have no pain. Had gabapentin fot my epilepsy a few years ago, Had to stop it cause of side effects, but I have a poor memory and have no idea what they were. Ha Ha. Go the bad memory!

LLOG so sorry about your mum. the adjustment time after a Dx is hard, but eventually you get to a stage where acceptance becomes easier, and sometimes with less anxiety actuallly comes, a little relief of symptoms. You just stop fighting it and adjust your life to make things easier. Talk to your Dr about Baclofen. It helpes many people and is an easy drug to take, with few side effects. Its worth a try anyway. Welcome and feel free to ask questions. Olly is great, and had has to deal with this illness for many years. You can ask away.

Aly

Aly

 

[olly]

hi llog,welcome to the forum.
sorry to hear your mums diagnosed,it will take time to adjust but with the right meds ,neuro plus supportive family and not forgetting us wonderfull people on the forum to help hopefully she will be ok.
please feel free to ask any questions.
take care.
caroline

 

[scott hakes]

I have had on and off problems with whatever it is I have for the better part of the last four years. I have had several MRI's in the past three years with absolutely no diagnosis. My symptoms will flare up and then for the most part disappear in a month or two. Each time my symptoms come back they seem to get worse and worse. My main symptoms are a strange tired sensation in my hands and legs and pressure in the back of my head. It almost feels as though I have to concentrate very hard to do daily activities that shouldn't be difficult. In addition I feel very dizzy at times and get a crawling feeling in my calves. My symptoms seem to become much worse in the winter months when the temperature goes down and I am getting viruses more frequently but then completely disappear. I simply don't know where to turn and feel very depressed about what is happening to me. I am not well but no doctors seem to believe me. Please help me! If you have any information or advice let me know. Thanks!

 

[olly]

hi scott.
i did you a reply but lost internet connection when i went to post it:roll: so will try to remember what i wrote.

the symptoms you gave were a bit vague.
i have dizziness due to low blood pressure and my ammune system can also be low but they are seperate from the pls symptoms.

do you have any neurological signs when you had a clinical exam like..........
hyperactive reflexes?
spasticity or stiffness?
impaired balance?

have they ruled out ms? sometimes mri's can be clean in the first few years but you need to check they did it with dye.
even with clean mri they can detect clinical signs on exam.
in mnd mri's are also ok but a neuro exam shows clear clinical signs.

it can take many years sometimes to get a diagnosed,i took 7yrs for me after ruling out ms and msa so i do understand how you feel.

my advice is find a good neuro (neuromuscular neuro is best) and stick with them so they can follow your progression.
going to different neuros is not good as they can not determine anything from an odd visit,plus you find neuros interpret signs ect differently from each other and this can make things more confusing.
when you see a neuro tell them only the main problems,as i said other things may not be neurological and it just confuses the whole picture.

 

[LLOG]

Thanks to everyone for your replies and has given me great comfort. The last few days I have never seen my mam look so well (the best in 2 years). and has said she feels good herself. Her walking is still very stiff and her left leg drags a bit at times but we will take each day as it comes. Thanks again and i am delighted to have found this forum.
Hope everyone is doing well and chat soon xx

 

[scott hakes]

Thanks olly for your reply! My symptoms are very strange and came on very quickly. I have had the same weakness in my arms and legs in the past but this time it has come back with a vengence! I feel exhausted even after eight to nine hours of sleep. My legs started to tense up and cramp suddenly over the weekend and then became very weak and hard to move over night. It was almost as if they had been shut off. My tongue started to hurt and I felt dazed and somewhat dizzy or half asleep also. The stangest symptom is that my eyes developed dark colored circles around them. It is VERY scary for me to go through. My doctor is checking me for Lupus but I don't think this is my problem. I feel I have either MS or ALS. I have been told that ALS doesn't go away and return later but that it only progresses. Time will tell but I hope I get at least some good news.