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kevinw

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DX UMND/PLS
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Hello everyone...I am new to the forum and a little nervous about posting. Anyway, here is my story. Looking back approximately a year and a half ago I noticed I was having problems going down steps. Whenever I was at my daughters basketball games I always had to make sure I was holding the rail going down the bleachers so I would not trip and fall, then when I would get to the bottom and start to walk on the flat it seemed my left foot would scuff across the floor and I would still almost trip. Well, I didn't think anything of it at the time, and if there were other problems they didn't stand out to me as much as the fear of bleachers did. Then summer came around and I noticed that my legs were always exhausted and along with that came a lot of tripping and falling at work. It seems I would not lift my feet up enough and would trip over just about everything, I suppose it was funny for everyone around at the time and it still wasn't a big concern to myself at the time. As fall and winter began, hunting season started, there I noticed that I was tripping over every stick and rock in the woods, in addition to that my legs had a lot more pain from pulled muscles than I ever remember having, it was about that time that I started to get concerned. In early January of this year I met with my first nero and he ordered a "boat load" of tests (ton's of blood work, three mri's, lumbar puncture, and an emg). After all of these came back normal or negative for what ever they were looking for, he refered me to Drexel University in Philadelphia. After meeting with a Dr. Patterson she kinda confirmed that she believed it was PLS and gave me prescriptions for a muscle relaxer and also for Rilutek and now I guess we are in the monitoring process (she also signed me up for the MDA).

As for now my legs are stiff & tense 80% to 90% of the day and I have pulled and cramping muscles by the end of a work day. The full upper leg shakes when I stand still and I do have some small muscle twitches & spasms throughout my body during the day. The only upper body problem that we have noticed is the movement in the my left hand & arm.

I guess my concern is that it is hard to imagine a year and a half from now, given the way things have gone the past year and a half. And with that being said it is hard to wrap my mind around a diagnose that is not proven by the results of a test.

Anyway if anyone has any ideas or opinions of a different problem here I sure would love to hear them.

Thanks
 

Geo

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Ruskin
Kevin Rilutek is for ALS patients and has tons of bad side effects it is intended for a last resort drug for ALS patients to help keep them alive . Why Did She Put You on it ?i can see Baclofen or Zanaflex But Rilutek ? How long have you been on it ? Dont you find your like rubber when on a Muscle relaxer ? Going down stairs is not good for PLSers Dorsa Flexon Issues are a Big one for us . How Old Are You ? and how long have you had it ? Geo
 

kevinw

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203
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DX UMND/PLS
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01/2008
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Ahhh...I agree. Sure seems quick from what I read in these posts. I am 35 years old. She said I should start so it would prolong the process (kinda getting a start on it)? She also started me on Baclofen three times a day, but I wasn't getting any results with it so I am now on Zanaflex (but only at night time) and I still don't feel any difference in my legs by the end of the day, also my left arm and fingers are still stiff.

I don't want to "put all my eggs in one basket", but from what I found of this doctor she is very respected in the field and very involved in the ALS Hope Foundation. So I fear that if she noticed something, I might be going down that road (as much as I hope differently).
 

kevinw

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DX UMND/PLS
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Sorry I just re-read your post....I just started the Rilutek about a week ago. I had the script but refused to fill it for a little bit, until I got frustrated with my legs getting worse. As far as for how long I have noticed problems, I could really only trace it back about a year and a half.
 

Al

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Hi Kevin. Some Neuro's think that if you MAY progress to ALS then the earlier you are on Rilutek the better it is. There is no definite proof that I am aware of but some of the Neuro's that see a lot of patients think that way. Either way it's a duck shoot. Some have side effects from it, some don't. Can you see or tell if it's working? Not really. So, what to do? Try to get educated and make the decision that's right for you and your family.
AL.
 

Geo

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Joined
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Like Al says Educate Yourself on what these drugs do and the side effects etc .I have read that Rilutek is extremely hard on the liver and other organs so be real careful . I was started on Baclofen and it caused Breathing issues so i got off ,then got on Zanaflex and it made me feel i didnt have control and also made me feel like Rubber ,also Neurontin , I do better not on anything as i have no pain just incoordination and clumsiness and stiffness .Got rid off the cramps and very seldom get them back . Good Luck in your quest Geo
 

kevinw

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Joined
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Messages
203
Reason
DX UMND/PLS
Diagnosis
01/2008
Country
US
State
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Thank You for your replies Al and Geo, from reading some of the other treads your input seems very educated/logical and I thank you for that. At this point, in the early stages of whatever this is, I just want to make the best choices to either solve the problem or make it as less painful as possible. One thing I must say is I have a great wife (although very frustrated at this point), trying to sort thru all the material that has been sent to us from the MDA and also on the web. Of course we are always looking for that "silver bullet" answer that points us in a different direction than our preliminary diagnosis.
 

Geo

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Kevin keep in mind ,it can always be worse ,so i geuss be thankful in a way . but knowing something is better than knowing nothing . So keep looking and maybe one of us will come up with something . we're not getting much of that from the Research Community ,hundreds of years have gone by for this Disease and not much in the way of answers . Geo
 

kevinw

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Messages
203
Reason
DX UMND/PLS
Diagnosis
01/2008
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Poconos
That's 100% true, I'm going for a massage this afternoon in hope of loosening things up and stop pulling muscles. At least I am still able to work at this point, although I pretty much spend my evenings resting to get ready for the next day. Who know's....maybe as the years go by I'll be looking into that warm Florida weather. :-D
 

crystalkk

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kevin, I am not diagnosed but i was just in florida on vacation (using a scooter) at disney.
I did not have any pain at all like i have at home. Weather means alot and also, I think being stress free with
no responsibilties of home life also helped.
 

kevinw

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Messages
203
Reason
DX UMND/PLS
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01/2008
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Hi Crystal.....I agree, I just seem more flexible in warm weather and not as tense in my whole body. I do still get a little tense, off balance feeling when I walk, and it feels like I'm bouncing when I stop or go down steps. But, I don't have as much pain from pulled muscles if I don't over do it. Also, I notice at work when things get stressful my legs seem to "lock-up" also.

Looking forward the warm eastern pa weather the next few days. :-D
 

crystalkk

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kevin,
If I get stressed my whole body gets stiff as a board, and the pain 10x's it self.
It a little hard not getting stressed, my kids are 4 & 7.
I am from PA also.
 

Roger Sanders

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Feb 28, 2008
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08/2006
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Go Colts!
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Johnson City
stress

I understand the stress part, I was a store manager for ICI. When we became really
busy and I got stessed, my symtoms would get really bad along with depression. I loved my job but it did help when I stopped working.
 

Geo

Senior member
Joined
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Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
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Ruskin
hey Guys i think this goes with the Emotional Liability part of our Disease and Brain as i dont think that we are a basket case .I have had some guys that were told you need to see a Psychologist . because theres nothing we can find in your tests that indicates some disease . Stress for me is bad too,and yes i do very good by having quite and calm . Whatever has gone wrong inside us has nothing to do with a Psyco case .
I beleive that our Adrenilyn Glands are affected and send Adrenil fluids to our Brains as if it were a Fight or Flight incidence . This is what the Adrenal Glands do .But the Muscles Lock up and wont move in an appropriate manner . This is why i say we need to know what goes on in our Brains as our Doc.s wont tell us . Geo
 

kevinw

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Joined
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Messages
203
Reason
DX UMND/PLS
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01/2008
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State
PA
City
Poconos
Geo...great point with the Adrenilyn Glands. I work as an appraiser in an autobody shop and sometimes I will have some "heated" discussions with a tech or with an insurance adjuster regarding how a vehicle should be repaired. Well when the discussion is over and I go to walk away they are stiff as boards and just will not work as one, it's the feeling like falling forward or backward with my upper body.

So, long story short....whatever is wrong with me I firmly believe that when my adrenilyn goes up, things get worse and the muscles lock-up (by the way, it's the same feeling when it's cold). But for now it's Friday and the sun is shining bright and warm, so it sure is a great day.
 
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