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Robynnblue

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I am just sitting here unable to sleep. Cant seem to shut my brain off these days, so I thought I would come on here and vent. I've been reading alot of the other PLS post from other people, and it seems like just about all of you have had to go through what I am rite now, with the waiting for some Neuro to believe that there is somthing wrong with me. The most frustrating part of it, is the fact that I have brisk reflexes and ankle clonus and he is telling me its coming from my anxiety, hmmm. intresting. On top of the hyper reflexes, I am also experiencing terrible balance issues. No clinical weakness yet, but do I ever feel weak all over. I've been getting such conflicting information from different directions, I dont know who to listen to anymore, not that anyone is trying to give me wrong info, but everyone says a little something different. If anyone does feel like responding to my just venting post, can I ask, If you yourself have brisk reflexes, are the all over or just localized to certain limbs? If you have weakness, is it allover or just in a limb or two, or is it just a fatigue fealing that you experience with PLS? And the balance issues, do you feal them just while walking or is it while sitting as well? These are just the questions that keep running through my head, 24/7. Huggs to all
 

BeckyUK

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Hi Robyn,
I've not yet been diagnosed but am suspected to have PLS at the moment, my neuro is not giving a formal diagnosis as he wants to ensure my symptoms don't develop further. My symptoms sound similar to yours in many ways...

- My balance issues are there most of the time - when I walk I feel drunk and unstable and a bit like 'bambi'.
- My weakness is mainly in my legs but my left arm is also affected mildly.
- I am generally fatigued; I can still climb a flight of stairs at a push, but at home I tend to take the last few on my hands and knees. Out of the house I have to pull myself up with the handrail. Walking for more than 15 mins or so is impossible.
- I have brisk reflexes in all my limbs, positive babinksi and clonus in both ankles along with increased tone in my legs.

It has taken 2 years for me to even get an indication that something may be wrong. Your neuro may be the same as mine and just want to see how things develop before pinning a diagnosis on you.
 

Northern Dancer

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Hi, Robyn,

So sorry to hear what you are going through. I was diagnosed with PLS a few months ago. I had the same symptoms but I just hadn't really noticed.I was sent to a neurologist only because I had fallen 3-4 times and fractured something each time. I had only one EMG done and was told immediately that I had PLS. No time to worry what was wrong. It must be much harder for you. Venting is a good thing - do it and don't worry how anyone reacts. Don't be afraid to ask whatever you want.

ND
 

Twinsmom

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Dear Robynnblue,
I know this may not be what you want to hear, but anxiety can do awful things to our bodies PHYSICALLY. If your neurologist believes your symptoms are being triggered by anxiety, you'd be wise to follow his clinical recommendations. I've seen anxiety create some incredibly difficult, and painful symptoms.

Did the neurologist diagnose with PLS? I hope you get the medical care you need.

Peace,
 

Robynnblue

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Hi Becky, may I ask how far into your illness did you develop a positive Babinski, and is your Bilateral Clonus, Non-sustained or have they called sustained. If its sustained was it like that from the start? Sorry to be asking, just trying to filter out my symptoms a little.
 

Robynnblue

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Thank you Northern Dancer for responding, and I'm sorry your going through all this too. One thing I'm really trying to figure out is everyone that said they were feel drunk when walking, is it because they have weakness somewhere and its causing them to be unbalanced, or is it because there equelibrium is off. Because I feel it while sitting also, Its just worse when I walk. Like I said just trying to filter my symptoms.
 

lydia

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Hi Robyn,

My balance issues are only when walking, not with sitting. I am not sure if it is weakness or spasticity or a combination of both that make my walking also like that of a "drunk" as well.

Lydia
 

Northern Dancer

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Hi, Robyn,

To me the balance problem felt like my legs were not responding to the commands from my head, especially if I was looking around while I was walking. I wasn't really aware of the spasticity until it was pointed out. Now I am quite aware that I can't relax my legs.

Strange thing - over the years I had several dreams in which I found it hard to move my legs forward, sort of like I was walking through quicksand. The same sensation that I now think advanced PLS must feel like.

My solution for staying upright is to always concentrate on each step and not let my mind wander. As well, I consciously tell my toes to lift up.

It sounds like you are experiencing dizziness as well if you feel off balance while sitting.

I hope that you are getting lots of support on this journey.

ND
 

lydia

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ND,

Just a quick comment on your remark about dreams. Lately I dream that I can't fully extend my legs straight when rising from a sitting position, that I stay in this bent-knee arrangement, fully aware that no amount of straining will get me upright, and just when I think I will collapse, I wake up. Very strange and I hope not a harbinger of what is to come.

I also must concentrate when walking. No conversations! No music!

Robyn, I know you are trying to make sense of spasticity. ND says that she is aware it is impossible to relax her legs. My experience with spasticity is not like that per se, in the sense that I don't feel the need to try to relax the leg. I merely notice sometimes the leg is hard to the touch (as compared to wiggly and completely lacking in what we commonly call 'tone' at other times). I especially notice my calf sometimes remaining rock hard and other times you can poke it and it will oscillate back and forth (the way our upper arms do when we are old :wink:).
 

olly

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hi nd.
the feeling you describe in your legs i have had on/off since the start,more now.
i described to my neuro that its like trying to walk through water,were you try to move your legs forward but a unseen force wont let them.

lydia.
my muscles can be very floppy as well,my calfs can giggle about without physically moving them.
when i first got diagnosed i thought the muscles should be hard all the time.
i looked up spastic paralysis and found that this is not the case,the muscles alternate between hypertonicity and flaccid.
asked my pt and she said it was right.

spacticity?
it can be described as stiffness or pain.
i describe the pain like wringing out a wet dish cloth.............you know were you twist it.
lately my ankles are bad.........always worse in bed on a night.
it feels like someone is torturing me and has my ankles in a vice and twisting it.

clonus can be sustained or come and go.
personally mine comes and goes depending on how bad the spaticity is...........which is typical as clonus is in part caused by severe spaticity.

balance is in most part caused by the spaticity in the legs.
we need a certain balance of umn signals to the muscles for correct balance............too little and we go floppy and fall down..........too much as in pls and we also then have problem.
in the begining with pls there is no weakness,that progresses from prolonged spasticity.
my first problems were balance and clumsiness,no weakness.
having said that further along the pls road the weakness would effect balance.
 

BeckyUK

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Hi Robyn,

I never actually noticed the Babinski or sustained clonus developing, it was there as soon as I was examined.

I originally went to my GP in June 2008 after I had been thrown out of yoga class at my local gym as I was completely unable to maintain any kind of balance. I had also been having some strange feelings in my upper legs and lower back, like a vibration sensation. My GP gave me a quick neuro exam and noted the positive Babinski and clonus in both ankles but sent me away and told me to come back a month later if I was still having problems as he felt I might have got an ear infection - he said I most definitely did not have a neuro condition as this would show itself as pins and needles not a sensation of vibration.

I went back in July 2008 and he then referred me to the neuro who gave me a really thorough exam including all the usual sticking with pins etc. Along with the babinski, hyper reflexia and clonus in both legs he also noted reduced pinprick sensation in the left leg and a positive Romburg test. At that time he noted that I had a spastic gait but on the formal test (where they lay you on your back and make you do cycle motions in the air) my legs didn't appear stiff.

My symptoms are pretty much the same as those everyone has described but the strangest feeling I have is the loss of my ability to run, similar to that described by ND. When this first began I was pretty scared as it was a feeling I couldn't describe; I tried to run a short distance to catch a bus and found that my legs wouldn't move how I wanted them to - it was as if I had never known how to run in the first place. I was worried that all my symptoms were a mental illness purely because I couldn't understand the sensation of losing an ability in that way.

The only other symptom I have is what I call the 'flutter'. This is a sensation that starts in the soles of both my feet at the same time, this then stops and moves up to my calves and then to my thighs and then lower back. It is not a twitch sensation in the traditional sense, but just a feeling of something moving under the skin. I notice it most when I wake up in the morning and at odd times during the day but I can sometimes go for days without feeling it.

I feel really lucky that I don't have a great deal of pain and what I do have can be controlled with a combination of paracetamol and codeine. The only pain I feel is a 'grinding' sensation in my joints which the neuro said is caused by the tight muscles taking away the joint's flexibility.

Hope this helps!
 

Northern Dancer

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Hi Robynnblue,

Haven't heard from you for a while. I hope you weren't scared away!


ND
 

Tokahfang

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Robynn and I speak on the phone daily. She finds hanging out here sets off her anxiety, so she has been avoiding it.
 

Northern Dancer

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DX UMND/PLS
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Beky,

Thanks. I was getting worried about her. Say hi for me,please. I hope all is well with you.

Lorna
 

lydia

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Hi Becky, can you say hi for me as well?

Lydia
 
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