Anyone with PLS - Help

[mookyred]

Hello all,

I have posted this before but I don't know if its out there. I am new to the site and just getting use to it.

I was diagnosed with MS in 2005. After going to 3 neuros in three different states, my first neuro is pretty sure I have PLS or HSP. I am going to the National Institute for Health if they accept my case. My neuro told be I should go there or to the University of Michigan - Dr. Fink. Has anybody been to either place?

My symptoms started in 2003. The first sign was when I was at work and got nervous or had anxiety the back of my right leg would get stiff. Gradullay, it became worse. Both my legs get completely stiff if I experience and anxiety, stress, or when my body is tense for any reason. Does anyone experience this? It is so bad, I can just fall in place. No balance whatsoever.

I also started out falling in addition to the spasticity in the legs. My right side is weak. I have been tripping a lot lately.

Also, has anyone experienced weak ankles to the extent that the foot just dangles?
This happened five years ago and I wonder if this was really the beginning of the disease. This happened only two days and has not happened since.

My short memory has gotten pretty bad. Anyone have this problem?

Any information or advice will be much appreciated.

Thanks for information oradvice

 

[ruby ben]

Hi - I have PLS - or as the nero says PLS with a big question mark. My symptoms are not quite like yours tho. My problem started 3 1/2 yrs ago in my right leg with tripping, limping and atrophy. I started loosing my balance about a year ago.

I understand HSP is hereditary and Dr. Fink is the best.

All the best....................ruby from vancouver (surrey)

 

[mookyred]

Thank you Ruby

Thanks for responding. I have a question. How do you know if your leg experiences athroy? Is Doctor Fink the best with PLS or HSP?

Thank You
Mary Kay

 

[Al]

Hi Mary Kay. The muscle shrinks with atrophy. You can actually see the size difference or some people measure every month or so.

 

[ruby ben]

Hi Mary Kay - I understand Dr. Fink treats HSP...............ruby from vancouver (surrey)

 

[rngran]

pls

also went to 3 neuroligists. had brain MRI, EMG tests. the last one diagnosed me with PLS. have been trying to research information and most is on ALS. my balance is bad, my right foot drags, movement is spastic, and hands sometimes very shaky. i use a walker and it helps. am getting more clumsy with my movements. as near as i can see, this all started about 5-6 years ago. good news is, it's not fatal or life shortening. bad news is, it's sometimes embarrassing but i'm getting used to it now. wish you luck in your future.

 

[kathmc]

mookyred, other plsers

Hi Mooky.

am sorry to always b so behind the times answering questions ( in older post ). Had a lot to deal w/ on lots of levels so don't get to forum as often as would like. Often forget to sign out so not here when appears that I am. Think it was 2 weeks ago was here last. More than likely a blessing as I talk too much.

Your questions last forum were exercise & meds. Meds right now baclofen, 20 mg. X4 a day. Some vits & supplements but seemed to progress faster taking stuff I tried when researching chems brain uses. After 60 days of that, quit it and speed seemed to slow again.

Yes on excercise, but it is as sporatic as forum visits right now. I don't recommend that approach. Did best b4 when logged efforts and added to them- got stronger. Several physical things put that waay back then add emotionial crap and stuff gets harder. Since I fall easy a elliptical is favorite way to experiencen feeling of close to normal movement. Also do assisted leg stretches, rehap stuff for frozen shoulder and sitting ( leg lifts, extensions ) exercises for strength. If you are doing better balance wise than me walking is my favorite ( impossible for me now).

Do you cry or laugh too easy now? I do. Was raised not to cry and have been making up for it the last 6 years. Hate it caus even smaltzy movies bring it on now or sometimes, really beautiful music or comedy..oh brother if there were only a med for that w/ no side effects.

A lot seems to hinge on sleep for me. Recently asked questions & shared sightings of the unseeable to pick brains here. Since then my GP set up sleep study and found I have sleep Apthia ( ?spelling?). The scary stuff seen ( on opening eyes ) was normal for weeks of less hour sleep a night. They are called hypnagogic hallucinations. After lost fear of them by talking to sleep Dr. actually found that eye and brain fixed on something in room and blew up detail of it right over face--- cornor of label on pillow became exotic insect, cobweb above a scary nebulous shape, etc. Am now trying to adapt to c-pak now but can only use it 11/2 hour so far. They say to get benifit need to use it 4 hours at least.

Hope I answered questions you asked long ago. Went to 1st. clinic this week and am interested in hearing about places that specialize in PLS.

Kathy

 

[Raymond B]

Hello all,

I have posted this before but I don't know if its out there. I am new to the site and just getting use to it.

I was diagnosed with MS in 2005. After going to 3 neuros in three different states, my first neuro is pretty sure I have PLS or HSP. I am going to the National Institute for Health if they accept my case. My neuro told be I should go there or to the University of Michigan - Dr. Fink. Has anybody been to either place?

My symptoms started in 2003. The first sign was when I was at work and got nervous or had anxiety the back of my right leg would get stiff. Gradullay, it became worse. Both my legs get completely stiff if I experience and anxiety, stress, or when my body is tense for any reason. Does anyone experience this? It is so bad, I can just fall in place. No balance whatsoever.

I also started out falling in addition to the spasticity in the legs. My right side is weak. I have been tripping a lot lately.

Also, has anyone experienced weak ankles to the extent that the foot just dangles?
This happened five years ago and I wonder if this was really the beginning of the disease. This happened only two days and has not happened since.

My short memory has gotten pretty bad. Anyone have this problem?

Any information or advice will be much appreciated.

Thanks for information oradvice

Hi Mookyred,

Your message is out there. I too am new to the site and just figuring out how to use the forum.

We seem to have very similiar cases. Falling in place, foot drop and then a fall, falling from poor balance, extreme spasticity etc, etc,

I have been to U of Miami where I was told I do not have ALS. At Colombia Presby in N,Y. they said I had Primary Progressive MS. Interesting because EVERY MRI, EKG, EMG, Spinal tap,and a multitude of other tests all come in Negative.

I spent a week at the Mayo in Rochester MI. They diagnosed me with Progressive Upper Motor Neuron Disease, most probably PLS. I m currently scheduling a test to see if a baclofen pump installed internaly would be helpful in my case. It would neither cure the condition or stop its' progression. If it does work it should greatly improve the spasticity. For me, any potential side effects would be better than my newly found avocation of breaking bone, ribs, teeth and wrist from some of my falls.

I hope you are getting the support which is so helpful in dealing with this wirdo disease.

Feel free to contact me if you would like to communicate.

In the meantime, keep on tucking.

Raymond B.

 

[DBowman]

RaymondB and Mookyred

I have been diagnosed with PLS by Johns Hopkins after many tests...They said I was a CLASSIC case. My symptoms started about 7 years ago with a slurred word here and there , now and then. I noticed things (music, events, even t.v. commercials) would bring me to tears way more easily than usual. About 5 years ago, I began to take longer to swallow things than usual. I began to get panic attacks before I ate out in restaraunts because my swallowing ability had been compromised...I was afraid to make a scene in public. A few months on an anti-depressant ( made for anxiety ) seemed to do the trick and now I can eat out again now that I am used to the way I swallow. Then I began to lose my balance from time to time...when I would tug at something or pick up something too quickly. I began to trip more easily because my toes started to drag (another characteristic). My legs went downhill in a matter of months...they began to feel heavy and stiffer...like they are made of wood. They don't hurt, though. I equate my walking to that of a toddler, now. I use a cane now and walk much better with hand railing or a shopping cart. I went to physical therapy and they told me I had weak ankles, hips, and shoulders. They showed me exercises to do at home. Ask your neurologist to write a "prescription" to go to physical thrapy and he'll hook you up to something that your insurance (hopefully) will cover. All you pay is the co-payment. I do get muscle cramps...worse than "charley horses"...they seem to come from deeper down. But, I believe The rilutek helps along with quinine tablets that I disolve under my tongue. It's hard to move around out in public but, I am getting used to it now. If I become anxious before I go to work or certain times in public, I take 1/2 of a Xanax AS NEEDED. You can form a dependency on the drug if you take too freely. I feel I need to keep up my walking and try to do as much as I can for myself so I don't lose the abilities that I DO have. I thank God evey day I can walk and go to work and do things for myself (it's too nice for people to do things for me...I could really get used to it!
Take care, DBowman

 

[TheRock35]

Symptoms

Hi,
I was recently diagnosed with PLS at UAMS in Little Rock, Arkansas.
My doctor told me that I had the classic signs after reviewing my MRI and going through a multitude of tests.
It started about 15 months ago with weakness in my hands. I couldn't button a shirt, or pull a zipper. I can still do most things, just don't have the fine motor skills and strength to do things like tie a shoelace. About 7 months ago I noticed my left foot drop. It made it difficult to walk, let alone run. It progressed a lot last November. When it gets cold my body becomes very rigid and I have great difficulty moving. Anxiety and stress also cause me to become very rigid or stiff. I have tremors (bounce) in both my legs if I place pressure on the right spot. For the most part, I just have difficulty walking and doing small things with my hands. I still do all things unassisted though.
It hasn't gotten any worse since November.
My doctor has placed me on Baclofen to address the spasticity but I can't really tell if it's doing anything.
Are these common symptoms for everyone else diagnosed with PLS?