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Thread: Stiff Person Syndrome is relentless killjoy

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Stiff Person Syndrome is relentless killjoy

    IV I G was a big problem yesterday. Things are going fine until six hours of the eight hour infusion. I stood up and walked to the restroom, about 12 steps. Both legs spasmed. I hung onto the door frame while the nurses could run and get a chair for me. It was very very painful and frightening. They started off the Ativan in the IV and waited 45 minutes toRestart the IV I G.

    That night, I woke up At 11:30with terrific leg spasms in both legs again walking eight steps to the toilet. My feet twisted to the side at the ankles and felt like they could snap a bone.Since I was only an hour away from my megadose of baclofen and to Zana Dean, I took it early and the spasm eased up with in 30 minutes. I was pleased I did not have to wake up husband.

    Unfortunately, at 2 AM, terrific spasms begin again and I woke him up to help. We did the rectal valium which works in 10 minutes. I then woke up at 5:30 with legs that we’re trying to spasm. I lay still and took my 6 AM does at 5:30 and it resolved in a half hour. My legs are now very weak and the muscles keep reporting in.

    I called my neurologist. He is increasing me from 100 mg per day to 120. If this does not do the job, he is thinking of Adding Valium to the mix. Valium is often used as first-line treatment for stiff person syndrome. He was trying to avoid it because of the problems with tolerance.

    If that does not work, there’s always the option of a baclofen pump.

    Today I am unable to drive. So I am staying home and doing just a little bit of what I can and nothing physical.

    This is a relentless disease.

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  3. #2
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    Ouch. A friend of mine had spasms like that after a surgery called SDR which is a surgery for Cerebral Palsy where they "get rid of" spasticity by burning some nerves in the spine but her body panicked during recovery. On the subject of pain I recently found this video about someone in chronic pain you may find interesting https://youtu.be/njrJkuYc8ag I pray the spasms stop!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Distinguished Community Member Sunshine's Avatar
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    Thanks funnylegs.

    Still unable to drive, funky legs, maybe by tomorrow thiugh. Better than yesterday. Last night nonspasms.
    Kept R2D2 next to bed so I could roll to the bathroom instead of walking the 8 or so steps.
    Shins still feel wrong today.

    Friend drive me to my docs today and produce stand.

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  7. #4

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    I am on IVIG and I hate it. My doc has had me on a number of different brands and regardless of what brand I'm on, on the pre-meds I am on, how much I hydrate, etc. I have horrible side effects; doc can't even put me on enough that is beneficial to SPS, I am sure. I've had Meningitis 3 times. I cannot have Benzo's due to new laws. I'm on pain meds but I need the benzo's more than the pain meds. I also have MS and several other neuro diseases. I feel like my life has been stolen from me. I am in a wheelchair bc of the MS and other neuro diseases causing me to fall, have no balance and all of the other reasons people are often in a wheelchair. However, the wheelchair seems to aggravate the SPS as I have bad spasms in my hips, down my lower back, legs, feet, ankles and I think "m starting to have them in my fact. I really don't know what problem is coming from what disease, although many are pretty obviously the SPS. I keep thinking that there has got to be more that can be done than this, although I have a great neuro immunologist. It's not bc of him I can't have the benzo's I was once on until new laws were made that he has to follow. He knows I need them and he's not the only doctor that knows I need them.
    I try to use a walker with wheels on it at home but it doesn't work too well.
    I hate to hear Sunshine how badly you have it. Mine, I can tell is progressing. I need benzo's badly and not because I am drug seeking. I need them bc they are the only thing that really helps the spasms which are getting worse. Like you, I often wake up in pain.
    Is it the SPS that make your legs weak? I ask because my legs are so weak. Exercise, or attempts at it, make it worse. Doctor's don't get this disease. I also can't tolerate Baclofen. My doc, after my 3rd attempt at tolerating Baclofen put me on Dantrolene which seems to be very similar to Baclofen, yet as I'm sure you know, the Valium is more effective than anything.
    Like you, I have days of being unable to drive and days where I can drive short distances.
    You are so right, this is a relentless disease. I often feel like the physical problems I have are going to kill me. If it's possible for pain itself to kill you, it will kill me. Not by suicide, that is not an option for me. I do believe there is one giver and one taker of life. I mean the pain itself. Do you ever feel like that? I've not cried from pain since being a child before I had this horrid disease.
    Thank you for sharing your experience. I am sorry you have this to contend with.

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    Distinguished Community Member Sunshine's Avatar
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    Bethany, first of all thank you for your courage in sharing your experience here. I like it here that we are anonymous. You will also see that I have mild MS, and I post in the braintalk MS board too.

    What state are you in that Benzo’s arent allowed? This is a new one on me. Do you have an advocate to help you get them legally?

    The pych component of SPS is a bear, almost as hard as the disease itself. I use MMJ which controls the pain, but only modest control of the spasticity, and doesn’t control spasm.

    Just recently doc has rx’d 1 mgLorazepam, which is Ativan for pre med of IVIG and on days of bad stiffening or spasm.

    Has your doc tried plasmapharesis since you cannot tolerate IVIG?

    It is so hard to exercise with SPS due it be being a spasm trigger. Swimming without kicking has been a lifesaver for me as long as I haven’t been spasming within a couple of days.

    Its so alarming to have these secondary problems due to the SPS and even the use of R2D2 (aka wheelchair): edema of the foot, skin breakdown, loss of aerobic activity

    And being in R2D2 makes every thing go slowly especially cooking. Even simple aspects of it.

    And the social isolation. And the looks of pity, withdrawal of friends etc.

    It also seems that this Disease brings emotional outbursts, or at least for me. Always had been a calm person, never yelled etc. Now I burst out with emotions at small provocations.

    I am reading about Buddhism and feel much more at peace so far .... go figure.

    Stay here, lets keep communicating. There are many readers. Many are too shy about putting their experiences here. But they benefit from “hearing” others with the disease. FB pages are too public for me.

    Oh, and could you break your posts up into short paragraphs. Many of us have focus, concentration problems and cant wade through lots of type

    Welcome, and sorry you too are dealing with this.
    Sunshine.
    Last edited by Sunshine; 12-25-2018 at 02:47 AM.

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  11. #6
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    Quote Originally Posted by Bethany6625 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I am on IVIG and I hate it. My doc has had me on a number of different brands and regardless of what brand I'm on, on the pre-meds I am on, how much I hydrate, etc. I have horrible side effects; doc can't even put me on enough that is beneficial to SPS, I am sure. I've had Meningitis 3 times. I cannot have Benzo's due to new laws. I'm on pain meds but I need the benzo's more than the pain meds. I also have MS and several other neuro diseases. I feel like my life has been stolen from me. I am in a wheelchair bc of the MS and other neuro diseases causing me to fall, have no balance and all of the other reasons people are often in a wheelchair. However, the wheelchair seems to aggravate the SPS as I have bad spasms in my hips, down my lower back, legs, feet, ankles and I think "m starting to have them in my fact. I really don't know what problem is coming from what disease, although many are pretty obviously the SPS. I keep thinking that there has got to be more that can be done than this, although I have a great neuro immunologist. It's not bc of him I can't have the benzo's I was once on until new laws were made that he has to follow. He knows I need them and he's not the only doctor that knows I need them.
    I try to use a walker with wheels on it at home but it doesn't work too well.
    I hate to hear Sunshine how badly you have it. Mine, I can tell is progressing. I need benzo's badly and not because I am drug seeking. I need them bc they are the only thing that really helps the spasms which are getting worse. Like you, I often wake up in pain.
    Is it the SPS that make your legs weak? I ask because my legs are so weak. Exercise, or attempts at it, make it worse. Doctor's don't get this disease. I also can't tolerate Baclofen. My doc, after my 3rd attempt at tolerating Baclofen put me on Dantrolene which seems to be very similar to Baclofen, yet as I'm sure you know, the Valium is more effective than anything.
    Like you, I have days of being unable to drive and days where I can drive short distances.
    You are so right, this is a relentless disease. I often feel like the physical problems I have are going to kill me. If it's possible for pain itself to kill you, it will kill me. Not by suicide, that is not an option for me. I do believe there is one giver and one taker of life. I mean the pain itself. Do you ever feel like that? I've not cried from pain since being a child before I had this horrid disease.
    Thank you for sharing your experience. I am sorry you have this to contend with.
    Hi Bethany, I don't have SPS. I have Cerebral Palsy instead but my type of Cerebral Palsy causes a lot of muscle tension. I alternate between canes and a wheelchair and the wheelchair causes hip tension too. The only things that helps is to stretch and move the lower limbs as much as possible. I'm so sorry you have side effects and pain. :(
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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