Page 1 of 5 12345 LastLast
Results 1 to 10 of 41

Thread: My First Relapse in 7 Years

  1. #1
    Distinguished Community Member Jen's Solitude's Avatar
    Join Date
    Aug 2011
    Location
    Delaware
    Posts
    115

    Default My First Relapse in 7 Years

    This thread will explain what has happened to me since the beginning of June. I can honestly say it has been the scariest experience I have had with my MS. I thought I had learned to handle unexpected problems over the past twenty plus years but this one really through me for a loop. The attack left me totally numb from the waist down in my right leg. It seemed to happen so quickly. One day I was standing on a step stool trying to get the smoke detectors to stop beeping and by the next day I thought I had done to much and would have to take a couple of days to recover.

    Instead the leg problem worsened and within 3 days or so I was totally without any function on my right side. It didn't take us long to realize this was not a small matter and for the first time in my life we had to call 911 for an ambulance to take me to the ER. I received a small amount of solu-medrol and oral prednisone. I got an appointment with my neuro and he put me on a 3-day solu-medrol drip along with a prednisone taper.

    We were totally unprepared for this flare-up. All I had here at home was a cane. Being so helpless and weak meant we had to quickly figure out how to get the help I needed to just get back and forth from my bed to my bathroom. (My bladder was also in terrible condition which meant frequent bathroom trips on almost an hourly basis.)

    My husband, Curt, rented me my very first wheelchair. It was a great help. The steroids gave me some energy so I attended 3 or 4 PT sessions which helped me to stand and take some shaky steps. My balance was gone and I wondered if I would ever get back the ability to walk again. My pt therapist suggested a walker for me to purchase and we also purchased a wheelchair that I used to get around my apartment.

    Presently I am walking although I still have more weakness in my right leg than I like. This month will make 6 months of recovery time. I have learned that I am far too impatient even after all these years of trying to rid myself of that negative personality trait. I found it hard to believe that after walking for at least 50 years I would have so much trouble doing it after a relapse. I keep my rolling walker and my wheelchair handy but for now I am walking unassisted trying to get the strength back on my right side.

    It is slow but steady and I am happy that I passed through October flare-up free. One more month to go and maybe I can stop worrying about another flare-up for a little while. October and November have been bad months for me in the past so with each passing day I breathe a little bit easier.

    Of course no relapse would be complete without problems with at least one doctor and I experienced needless stress from the one doctor I thought I could depend on. I will therefore be finding a new neurologist when I get the energy and I am glad that my family doctor has proven to be a reliable ally for me.

    Well that covers my experience in a nut shell. Wouldn't it be nice if I could go another 7 years before I had to handle another relapse?

  2. The following 7 users say "thanks"


  3. #2
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,954
    Blog Entries
    15

    Default

    That sounds miserable for you but I'm betting you're no more impatient than most people. This MS nonsense would try the patience of a saint.

    It does take time and more time.

    It's nice when someone mentions how helpful a wheelchair has been. I'm still very glad to have mine and spend most of my time in it even though I get up and walk around the apartment quite often. In fact I've been advised to keep doing that so as not to lose any more leg strength.

    Physical therapy has bailed me out several times now--when pain and loss of function were threatening to be the order of the day.

    Of course no relapse would be complete without problems with at least one doctor
    I had to laugh at this because it's so very true. Some neuros can be arrogant know-it-alls. Huffy and full of themselves, without any time for their patients because they're busy being Important. I've been lucky because the last two I've dealt with have been gems.

    Congratulations on getting your mobility back! That's a great achievement, and it didn't just happen. You worked on it.

    It takes ever so much effort to find ways around what MS does. I'm so glad you're going better.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



  4. The following 6 users say "thanks"


  5. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    4,255

    Default

    Sorry this happened, is happening, DAR.
    ANN
    There comes a time when silence is betrayal.- MLK

  6. The following 5 users say "thanks"


  7. #4
    Distinguished Community Member Jen's Solitude's Avatar
    Join Date
    Aug 2011
    Location
    Delaware
    Posts
    115

    Default

    Thank you ANN.

    Agate I have never appreciated leg strength and balance as much as I do now. It is amazing to me what all is involved in just being able to stand up straight and take one step. You do it without thinking and when it is suddenly gone you wonder why it is so difficult. But like you said I am improving so will keep trying to remember things could be worse.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

  8. The following 5 users say "thanks"


  9. #5
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,351

    Default

    I think the physical problems of MS are my biggest problem. It is so irritating to never know when you are going to take a header and go A@@ over tea kettle. Our new house is designed and laid out so that there is always something to grab a hold of and it works pretty well.

    I have to admit that over the last couple of years I have started to develop more cognitive issues. I did spend the first couple of years with MS wondering (obsessively) what else could go wrong. Thank God for AD's.

  10. The following 6 users say "thanks"


  11. #6
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    W. Mass
    Posts
    238

    Default

    Hi Dar,
    Long time ,no see'
    I'm not around much. Linda Lazarus let me know you were here.
    Sorry for the big relapse. My mobility is pretty gone but it has been more progressive rather than a big event. Only exception was when I had the flu last winter. I lost a lot and regained a little.

    I am going for a second opinion at MGH next week for treatment. Neuro at MSClinc in Worcester kind of shrugs.

    Will see Linda tomorrow for second to last farmers' market of year.

    Great to hear your voice, Dar.
    -Susan
    Be the person your dog thinks you are

  12. The following 6 users say "thanks"


  13. #7
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Posts
    1,877

    Default

    DAR,
    I had the worst relapse I can ever remember in the Spring of 2013 and have not fully recovered from it yet. Did not do steroids. Went on Tecfidera...AWFUL!....then my doc suggested I try LDN...nothing, just continued to worsen....then I went back on REBIF after 4+ years off and things normalized. Had to go off it earlier this year because of $2000/month copay with this insurance and worsened again till I got help with copays in July and went back on . Not back to previous normal and thinking I probably will not get there at this age and after all this time but I am pretty independent and highly functional so am not complaining. When we get to a certain age, we have to start looking at what might be MS and what could be related to age or underlying other illnesses.

  14. The following 5 users say "thanks"


  15. #8
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,954
    Blog Entries
    15

    Default

    Dar, you were on Copaxone a while back--are you still taking it?
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



  16. The following 4 users say "thanks"


  17. #9
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Posts
    1,877

    Default

    DAR... Tell us what you were doing and we can corroborate. I tend to do well on REBIF and when I go off not so good things happen. Each of us is different so tell us what you are doing and we can commiserate.

  18. The following 5 users say "thanks"


  19. #10
    Distinguished Community Member Jen's Solitude's Avatar
    Join Date
    Aug 2011
    Location
    Delaware
    Posts
    115

    Default

    Quote Originally Posted by Gary View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I think the physical problems of MS are my biggest problem. It is so irritating to never know when you are going to take a header and go A@@ over tea kettle. Our new house is designed and laid out so that there is always something to grab a hold of and it works pretty well.

    I have to admit that over the last couple of years I have started to develop more cognitive issues. I did spend the first couple of years with MS wondering (obsessively) what else could go wrong. Thank God for AD's.
    Gary, one thing that troubled me the most was the fact that I kept falling. Seemed like I kept discovering new ways to fall. I actually pushed myself out of a rolling chair I was using and fell to the ground. Each time I fell I was unable to get up under my own power. I asked myself how many more times was I going to fall before I finally broke something? I am glad I just bruised myself and never did break anything. The fear of falling is only now beginning to ease up. I guess the longer I go without a fall the more confidence I will gain. Falling is the pits!
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

  20. The following 6 users say "thanks"


Page 1 of 5 12345 LastLast

Similar Threads

  1. 4 years
    By Bill[uk] in forum Colloid Cyst
    Replies: 14
    Last Post: 09-26-2017, 12:02 PM
  2. Pain = reduced relapse rate
    By SuzE-Q in forum Multiple Sclerosis
    Replies: 3
    Last Post: 08-04-2015, 12:36 AM
  3. I haven't slept properly for years & years!!
    By Catherine2202 in forum Sleep Disorders
    Replies: 1
    Last Post: 12-22-2013, 07:44 PM
  4. 5 Years!!!!!! :)
    By Beachgirl in forum Aneurysm
    Replies: 3
    Last Post: 01-31-2013, 02:17 PM
  5. It's been many years since I've been here...
    By Sparky10 in forum New member introductions
    Replies: 2
    Last Post: 06-28-2012, 10:53 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.