Page 19 of 20 FirstFirst ... 914151617181920 LastLast
Results 181 to 190 of 198

Thread: Stiff Person Check In

  1. #181
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    Yesterday saw improvement in walking. I spent much more time on the rollator and less on the wheelchair— a blessing! Hoping for this improvement to maintain itself...don’t know why , but I will take it :)

    Today is the urology consult on the Urodynamic study results and recommendations. So tired of these doc appointments and begging rides and leaning on spouse and friends...who do it without complaint...

    Yesterday a new friend took me to the GI consult (GI problems caused by muscle relaxants), and that was so kind and generous of her...Lucky I am now at an age where many friends are retired...

  2. #182
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    Trying a med Rxd by Urologist to improve muscle coordination of the bladder. But it has side effects of headache and sinus stuffiness—not fair...

  3. #183
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    My youngest is visiting this weekend. Will take an Ativan soon so I can enjoy the visit more, since it helps with walking and stiffening.

    So sad that SPS impacts my family so hard. To know how painful it must be for my loved ones to witness my decline breaks my heart.

  4. #184
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    So, I did Ativan for two days in a row, and life was so much better on it with respect to walking and pain. Did not have to use MMJ at all, barely used the wheelchair, only used the Rollator to catch me just in case I spasmed while walking.

    I will be off Ativan for child’s last visit today. Because doc said only use it 3 or 4 times per week, and I want to save it in case i have a spasm this week...Neuro says that using it mor than that can lead to tolerance, i.e. lose its effectiveness and makes it hard to taper it down as it is addictive to the body....

    Perhaps this is why SPS patients often find their Valium loses effectiveness over time
    Last edited by Sunshine; 07-07-2019 at 02:22 AM.

  5. #185
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    Poor walking today, mostly in wheelchair. Might be because I messed up and took my 30mg Baclofen and 8 mg Tizanidine at 10:22 pm instead of 12:30am. ...hope it will resolve by tomorrow...

  6. #186
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    Today the hospital called: They have an infusion med. I will do it at the hospital Thursday. My sister who was coincidentally flying down Wednesday night, will come with me , drive me, etc since DH only has WEdnesdays off. I was kind of starting to look forward to a home based one! But this will put $800 back into my pocket. I will treat sister :)

    The secretary said, “This is a one time appointment”,meaning they don’t have a reliable source yet. So home might still be in the future.

  7. #187
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    Two brief spasms in left ankle and foot at 3:45am and 4:10am today— first spasms in weeks. IVIG is Thursday at the hospital. Hoping it halts this trend...

  8. #188

    Default

    my name is pat I also have sps and just finding post of sps it would be nice to talk with someone that understands

  9. The following user says "thanks"


  10. #189
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    Hey there Pat. I sure do understand. If you feel comfortable, tell me more about your challenges etc.

    Today I am in IVIG for 8 hours, so I won’t be able to respond until the end of the day, or if knocked out, tomorrow. But I hear you :)

    This is a beastly disease, and if it were on a sci fi show, viewers would say, “Thats an impossible disease. No one would believe that its real”

  11. #190
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    5,424

    Default

    For self, IVIG finally happened on Thursday, 4 weeks late. Hospital finally found some Ig...I had a big spasm at 3Pm, had to take IV ativan for it and restart , that was on top of the 2 ativan pills that day, and one an hour after the IV ativan (Should’ve skipped that 3rd pill as advised to skip it by RN was too drowsy by nighttime,hard to awaken). Finished it, went home. That night at 5am awoke with a bad, bad ankle spasm that wouldn’t stop. DH did rectal Valium.

    Doc said he is fine with cutting back to monthly instead of alternate week IVIG in light of these IVIG driven spasms which he finds curious since the drug is supposed to counteract MS and SPS...

    It had been 6 weeks past last IVIG and I wonder if that was a factor. Don’t know.

    NOw am trying to line up home health for monthly infusion. ITs a pain to work with their scheduling....

    Meanwhile, Quest has not fixed their rest room. Went Friday to give urine sample to r/0 UTI— still no grab bar. Pissed. So, I emailed corporate quest. I got an immediate reply from corporate quest, since I said I would contact the ADA and issue a complaint. Was just typing out the complaint.

    They were apologetic. I was polite, and firm and said that in two weeks if it wasn’t fixed I would indeed complain to ADA. They said they would fix it and call me back when it was fixed.

    They thanked me for being patient and polite. I said, I am thin and was able to use my walker to get around the bad situation, barely. But that a fat person would surely fall and maybe break a hip and maybe die from a broken hip. They undrstood the seriousness of it. LEts see what happens.

Page 19 of 20 FirstFirst ... 914151617181920 LastLast

Similar Threads

  1. Stiff Person Syndrome
    By Sunshine in forum Stiff Person Syndrome
    Replies: 6
    Last Post: 02-06-2018, 03:50 AM
  2. Stiff Person Syndrome
    By Sunshine in forum Multiple Sclerosis
    Replies: 4
    Last Post: 01-07-2018, 04:58 PM
  3. Tell about Your Stiff person challenges
    By Sunshine in forum Stiff Person Syndrome
    Replies: 0
    Last Post: 01-06-2018, 02:54 PM
  4. Causes of Stiff Person Syndrome
    By Sunshine in forum Stiff Person Syndrome
    Replies: 2
    Last Post: 01-06-2018, 01:47 PM
  5. Stiff Person Syndrome
    By Sunshine in forum Stiff Person Syndrome
    Replies: 0
    Last Post: 01-06-2018, 06:03 AM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.