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smblaha

Member
Joined
Jan 10, 2010
Messages
10
Reason
DX UMND/PLS
Diagnosis
12/2009
Country
US
State
IL
City
Darien
Well I went to Cleveland Clinic for my second opinion I was hopeful they had more information or some other new research. Their website gleams with the promise of a "team approach" to diagnosis and treatment. What a ripoff! I saw one neurologist who kept us waiting over an hour came in said he read my medical records. He poked me with a pin a few times in my feet then told me to walk on tiptoes (this has been an impossibility for 4 years now) then he wanted me to walk one foot in front of the other (also impossible) and after he answered his pager and returned a couple of calls told me it's definatley PLS. There is nothing that can be done except to consider increasing my Baclofen or to have the pump implanted. I was so disappointed because I felt stupid not diagnosed or treated!

My neurologist here is upping my Baclofen to 60mg total across the day. Lately at night I spasm pretty bad and the only thing that helps is laying in bed, but now it's like my legs are riding a bike continuously especially when I'm trying to sleep. (They originally diagnosed me with restless leg syndrome and I was on Requip for about 7 years until I found out it was PLS) then they told me I was on the wrong meds and put me on Baclofen in 2009.

I've noticed that lately I can't handle stress or anger very well and I can hardly walk if I'm mad or stressed out. Also, my left arm is useless when I'm sleeping I can't even use it to pull the covers over me. I'm unable to pinch or grab with my left hand. I also laugh and cry uncontrollably which isn't so bad except when it is inappropriate or I laugh until it hurts and I can't breathe. My neurologist put me on Amitryptalene (?) for the laughing/crying/depression thing and it seems to be helping.

I don't know how much longer I'm going to be able to work. My job is incredibly stressful and my boss is a family practice doctor who thinks he is God and its his way or the highway. They still don't know what I have (though I'm sure they guess it's MS or that I drink at lunch). I know that soon I'll have to decide if my LIFE is more important than my JOB and make the break.

I feel that I'm finally coming to terms with what is going on with me. I feel less and less anger and more and more acceptance that it sucks but it's what I have and I have to make the best of it. I read the forum often and it has become my place to go for the opinions that really count...those of us who live it! Thanks and I'm glad you all are out there.
 
My husband's job was literally killing him. If your job is stressful, you need to quit. He didn't tell anyone at his office what was wrong with him either. He just went on disability one day.
 
hi smblaha.
like miss said stress is very bad for all neurological deseases,it can literally speed up progression.
if you now have a diagnosed maybe its time to apply for ssd and retire on medical grounds.
during the start of pls i tried going back to work three times but my body could not cope so had to/was told by my boss to go on perminant sick leave.

in the early years i had very bad myoclonic jerks,these effected my legs on a night and they would kick out violentley.
i need to relax for a few hours before sleep...........i have my shower and get ready for bed by 8pm,about 9pm i take my baclofen and sleep med and go to bed to watch tv or read for a couple of hours till my body relaxes.

i have learnt after 11yrs with pls that you need to listen to your body...............if you feel you can do something then do it,if you dont then dont.
this can help slow things down and keep your mobility for longer.

it is hard to accept that this is it for the rest of our lives but at least we have some sort of life ahead of us unlike those with als.
we are always here for you.......and totally understand.
take care.caroline
 
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