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Our Journey w/ PPMS

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    Our Journey w/ PPMS

    Hello,

    This may be discouraging to most folks, but want to share my experience about my husband. He had been misdiagnosed or neglected by healthcare providers for I don't know how long. Starting in 2011, He started to develop left leg weakness and atrophy. He started shaking his arm to deflect numbing sensation sporatically. It drove me crazy! I kept telling him was prob carpal tunnel. Slowly weight dropping, but still going to work.

    He had private healthcare and had same PCP for over 9 years. In 2004 he had a L4-5 spinal fusion so did suffer from chronic back pain. He started behaving differently and made poor judgment calls which cost him his job. Meanwhile he was seeking care from Concentra from fall at work. We decided to move to SC March 2012 after being invited by his brother.

    in time period before move, I noticed his movements were slower and more fatigued. Had been using a cane at this time and increased left leg weakness. Now he had lost his PCP and only seeing Work Comp Dr. Once in SC we found a pain management ?spine specialist? to treat him. Before this was approved, I had taken him to multiple ER's/Urgentcares etcc. He was labeled a drug seeker. Once seen by pain management he concurred there was spinal injury an needed to see neuro. Work Comp of course would not authorize anything other than lumbar spinal steroid injections.

    With in the 1st month of arriving to SC, he starting falling frequently, noticed more fatigue and delay in response. Work Comp did authorize PT/OT, so he went from cane to walker to wheelchair in matter of months. By Aug 2012, it took me and my son to get him in and out of car. He lost most of his mobility and dexterity. We saw a neuro sx, who ordered a cervical MRI and called me next day saying he was perplexed as to why he's experiencing these symptoms. MRI didn't show much to explain.

    Completely wheelchair bound by Nov and became increasingly incontinent. I did not know what to do other than to call paramedics few times for eval, and took him back to hospital to explain the neurological and physical changes. His legs were extremely spastic and rigid. Shook all the time. By Jan, I decided to take my family back home to AZ because his family were of no help. They assumed he was either drinking or on drugs/ BTW, the sister in law was a NP. They kicked us out w/i 1st month of arriving and we were stuck in hotel until able to save enough to go back home.

    I had been in contact w/his work comp attorney on daily basis w/his symptoms. I swear he had a stroke. His speech changed and I discovered he couldn't tell the difference between which meds he was taking. So it's Jan 2013 and were back home. 3day drive with him laying in back w/urinal and me and son getting him in/out of car for hotel stays. I took him to local hospital ER, he was admitted, and very next day diagnosed w/ PPMS. This was Jan 17th. You can't imagine the stress and guilt of thinking he wasn't trying to help himself (and resentment).

    As soon as he was diagnosed, work comp terminated, so no income and we were staying w/ my sister's family in her living room. Had multiple arguments w/case managers because we had to health ins. Was actually accused of dropping him off because I didn't want to take care of him at home. They discharged him a week or so later and he required 24hr care.

    He started to go pale and just faze out at times. Was completley dependent. Another call to paramedics stating his neuro changes, back to the ER. Dr was very concerned not just for him but for me as I was a complete wreck. Told her Case management would not let her admit him unless he has infection or anything she could find to justify. Needless to say he was sent back home but this time w/ catheter per my request.

    I was changing his bedding 3x/day and going thru pads like crazy. Not only trying reposition him and/or get him into WC for daily care, it wasn't enough. He developed bedsores on heels, coccyx and one of his hips. He started hallucinating and I knew he was dying. He stopped engaging and our dog wouldn't leave his side. So, another call to paramedics, took back to hospital for further eval. ER Dr suggested him going back home or he will try to admit. In my desperation I told him if he sent him back home, I would blow my fng brains out. He left the rm stating he had a few calls to make.

    I fully expected mental health personell to come get me. Instead the RN came and said he was being admitted. He was in and out of lucidity, the hospital was planning long term care placement for him. After a week of 2nd admission, he developed fevers, and course of care completely changed. Late Feb. 2013 he developed pneumonia and UTI. His fevers were horrible. Most of nurses understood what was happening as I did and had no prob medicating around the clock. Soon, I was consulted by treating MD to discuss plan of care. It was decided to dc the antibiotics, increase his pain and anxiety medications and transfer to Hospice.

    He went to hospice on a Thurs and died on following Sunday, March 3, 2013. What I have a concern is, how long did he have this MS before it became too late to treat? I never researched a case that this was so aggressive. Dr told me, he has found w/ men of his age (41) that this disease was in fact more aggressive and medications do not work. The damage too far gone to repair. So I am left with the before and aftermath of trying to console my son and forgive myself. I have the pressure of trying to get employment to support myself and become independent after being married to a man for 17yrs. I apologize for not sharing something positive but I don't think enough research has been documented of this type of aggressive detioration.

    #2
    I am so, so sorry for your loss and everything your family has been through.

    I want to thank you for sharing your story though.

    Comment


      #3
      Dear chesmik3~

      I too am so sorry for your loss. It hit close to home as my husband passed away from mestastic melanoma years ago leaving me a shocked single mom of 2 little ones. The first thing I did was get in touch with our local social security office - something I would encourage you to do. Without their help, I would not have been able to survive.

      I am not all that familiar with aggressive MS, but know it is a rare form. I found this from buzzle.com -

      "MS is called aggressive MS when the disease progresses very rapidly from the onset, leading to severe disability within a relatively short period. It can lead to death within a few weeks. Fortunately, this form of MS is extremely rare. The acute form of MS or aggressive MS can almost immediately result in death. Otherwise, MS is not considered a fatal disease and the symptoms of MS do not typically lead to death. MS affects the body systems and the risk of catching infections like pneumonia and suffering due to other diseases increases."

      I want to thank you for sharing your story which must be very painful to write. You say you need to forgive yourself, but please don't feel that you are to blame in any way!! You did all you could when you could.

      My heart goes out to you and your son.
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        My heart goes out to you for your loss from such an aggressive course of this disease. My husband was diagnosed with PPMS in 2010. His disease course is not nearly so aggressive.

        Please remind yourself that you did everything possible to help him. You are in my prayers.

        Lib053

        Comment


          #5
          I'm so very sorry for your/your son's loss. Even more sorry that you did everything you could to get medical and family support with no action.

          Thank you for sharing this tragic story, please be kind to yourself as you certainly deserve it. My heart goes out to you and your son.

          Jen
          RRMS 2005, Copaxone since 2007
          "I hope to be the person my dog thinks I am."

          Comment


            #6
            our journey w ppms/recovering slowly

            I'd really want to thank every ones support and understanding . I was amazed w the buzzle web site re; aggressive MS . I did not know that was part of actual diagnosis , just considered aggressive as a verb .it was interesting and heartbreaking.

            Yet another something I didn't know .also still find it surprising that people actually get what we went through wo anyone in his family attempt in helping us thru that before dumping us a hotel . I had too much pride to ask them for help after that and resent them to this very day . Of course it was a surprise to them when out of pure courtesy to tell them my husband was dz"d w POND.

            I thought of genetic disposition possible , I'd want to know .his brother 's response (all communication via email ) was they would never have guessed that one. Just proved my theory that they thought he was drunk or addict. Didn't get any other response until I notified another brother how I thought he was dying. Then another email asking what was going on .

            Once I let his family know he was going to hospice, I let other knw I would not be updating anyone about his status. Had hospice put block on all info, should his family call for info and no one was to visit wo my permission . They weren't there for us in beginning and I wasn't about to share my last moments w people who would only be there out of guilt or question me on every detail. They all wanted to knw when and where services would be held.

            I chose not to due to lack of funds but couldn't imagine what my son and I would go thru w phony condolence. We needed the help during . I lost everything Not only my husband and father of my son, but my independence, the thousands of dollars to move to SC, my car , and everything else we owned .

            So I'm not only mourning for my husband, I'm trying to adjust to starting completely over . Lately I've noticed I'm lonely and haven't had time to process everything that's happened .Haven't received any communication frm his family .it's hurtful that they don't care how their nephew is. I'm rambling but long story is that strangers and my friends understand the position were put in and are astonished we were tteatref like ****. This is my one of my many challenges to overcome .so thanks to all of your support. Very appreciated

            ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

            Comment


              #7
              I understood every single word you said. The family dynamic...I am still searching my brain regarding the family issue. I think it is a symptom of MS. Misunderstanding, so please believe me; I think the chose you made about notification, etc. was right. You had a rock in the pit of your stomach and you readted the way you had to. I thought my two sisters would surround me...for 10 years now we have had issues (I also lost my only child right before diagnosis-so another family dynamic. I kept thinking 'I thought they knew me better'. But this must be normal, as I have read of others who can't understand the reaction of the family.

              I am so sorry your husband didn't get diagnosed. Sounds like there might not have been a drug that would have helped but steroids might have made him feel better.

              After these past years with MS and now; I have suffered symptoms and pain that I didn't know existed; had Dr.'s yell and laugh at me; been treated as I want pain medication to sell. All the symptoms you mentioned as it related to your husbands experience sound very familiar to me. I hope you can find a way to heal yourself-forget about your family for now...just let it ride. They should come to you. I will probably get blasted for the negative tone of this post. But often I wonder why more people try to make this such a 'happy' disease. I don't really mean to say this like it will come out...but had your husband had to go through that agony for many more years...it would have been even more devastating. My Mother and I have often said we wish I had something that would take me sooner/other than just suffering 24-7. I send light and understanding to you. Forgive my negative comments.

              Comment


                #8
                journey w PPMS (aggresive)

                I think I'm finally coming to acceptance of my husband's rapid passing. I had never heard of a MS hug before reading on this site. He had an episode in SC where he was having chest pain. I thought it was due to a panic attack but called paramedics just to make sure. Of course hospital sent him home, non cardio event. I'm discovering reasons and actual useful information to explain the things that he went through and why he passed so quickly. Certain symptoms he had actually making sense to me I hope this is a personal triumph for me to heal, accept and forgive. I'm a work in progress but this site and support has given me some resolution. Thank you

                Comment


                  #9
                  My biggest fear when getting diagnosed with MS and one that persists with me today is putting my wife and children through what you have described. You lived through a nightmare... but you did live through it and you showed inspiring strength in caring and advocating for your husband. Give yourself time to grieve, then apply that strength to rebuilding your life and you will be successful.

                  I dealt with family issues when my father passed away suddenly from cancer. There is no way to deal with it, it blind sides you, you did an incredible job balancing your duty to them through your justified anger.

                  Hopefully the speed of this situation will allow the 17 years prior to remain in your mind more than the months leading to his passing.

                  Thank you for sharing your story, i wish you the best of luck.

                  Comment

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