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.
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.
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