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Thread: Needing help for a case of progressive disease

  1. #1

    Needing help for a case of progressive disease

    I'm a male , age 61.
    On October 97 , following a viral pleuritis , i got a myeloradiculitis ( root inflammation and arachnoiditis in the lumbar-sacral zone ) . Therapy based on IV steroids and plasmaferesis allowed a passable recovery : at the end of 98 i was able to walk 500 meters without aids and to drive a car for about one hour without problems before to get tired . I had no fatigue , spasticity or myoclone jerks . The general opinion from the physicians was that the episode was single and the general situation steady. However starting from the middle 0f 99 , the situation started to decline steadily . At the actual date i am unable to stand on my feet , i experience pain,spasticity,myoclone jerks and fatigue . Worse , i am losing the use of arms and hands and the situation is not steady.
    Starting from 2001 , postulating that the disease was autoimmune , i tried several kinds of immunosuppressants ( azathioprene, cyclophosfamide, mytoxantrone) with no results . Immunoglobulin apparently slowed a bit the decline , but are now ineffective.
    On December 2005 i went to Beijing to receive injection of embrional ensheating glial cells in the spinal cord : no results.
    As for now , a complete diagnosis of the disease evolution is lacking : the general opinion seems to be that it is little important , as almost available care was tried and it did not help.
    I would be very grateful if Doctor Young could give me his opinion on my case.
    Thanks,Luciano

  2. #2
    Quote Originally Posted by boncialu
    I'm a male , age 61.
    On October 97 , following a viral pleuritis , i got a myeloradiculitis ( root inflammation and arachnoiditis in the lumbar-sacral zone ) . Therapy based on IV steroids and plasmaferesis allowed a passable recovery : at the end of 98 i was able to walk 500 meters without aids and to drive a car for about one hour without problems before to get tired . I had no fatigue , spasticity or myoclone jerks . The general opinion from the physicians was that the episode was single and the general situation steady. However starting from the middle 0f 99 , the situation started to decline steadily . At the actual date i am unable to stand on my feet , i experience pain,spasticity,myoclone jerks and fatigue . Worse , i am losing the use of arms and hands and the situation is not steady.
    Starting from 2001 , postulating that the disease was autoimmune , i tried several kinds of immunosuppressants ( azathioprene, cyclophosfamide, mytoxantrone) with no results . Immunoglobulin apparently slowed a bit the decline , but are now ineffective.
    On December 2005 i went to Beijing to receive injection of embrional ensheating glial cells in the spinal cord : no results.
    As for now , a complete diagnosis of the disease evolution is lacking : the general opinion seems to be that it is little important , as almost available care was tried and it did not help.
    I would be very grateful if Doctor Young could give me his opinion on my case.
    Thanks,Luciano
    Luciano,

    The symptoms that you describe of progressive degeneration may be due to many possible diseases. Autoimmune is one possibility but, as you know, treatment with immune-suppressants are not very effective against such conditions.

    What is important is for you to rule out readily treatable causes of neurodegeneration. One cause is B12 vitamin and folate deficiency. These deficiencies may result from other causes besides inadequate diet (such as malabsorption). The diagnosis is made by measuring blood folate and B12 levels. If they are low, they can be supplemented by injection.

    There are perhaps hundreds of neurodegenerative disorders, many of them affecting the spinal cord. Some involve the myelin (such as multiple sclerosis) while others may directly involve the degeneration of neurons or axons. MS is an autoimmune disease. Autoimmune diseases tend to be associated with the presence of antibodies and inflammatory cells in the cerebrospinal fluid.

    If MS or an autoimmune-mediated degeneration is involved, some of the treatments that have been developed for multiple sclerosis and related disorders may have some beneficial effects. Is there any evidence of plaques (these are signs of inflammatory degeneration of white matter that often show in multiple sclerosis. There are many variety of sclerotic diseases that are often classified under mutliple sclerosis.

    Given your history of a myeloradiculitis, one possibility is that you may have a continuing viral infection or some form of relapsing encephalomyelitis. Have you had tests for antibodies against viruses, such as the Epstein-Barr virus or Herpes? Have you ruled out the possibility of a chronic yeast infection (actually, I had always thought that this was very rare until I started to look into cryptococcal infections of the spinal cord after somebody asked the question in the Care forum). Do you have signs of infection, i.e. a chronic low-grade fever? The reason why I mention these is because viral and yeast infections can be treated with drugs if they are identified.

    Do you have any family history of a neurodegenerative disease? I assume that you don't because you don't mention it but you should ask if there have not been any concerted effort to find out. This may give you some clues. do you have any evidence of lupus erythematosa? This is a chronic inflammatory autoimmune disease that often affects the spinal cord. However, you should be having some other symptoms.

    If you would like, I can go through the diagnoses for neurodegenerative diseases...

    Finally,

  3. #3
    I would like to add some additional information on CSF and MTI tests and care effectiveness.
    On Dec 1997 : CSF cells 66 , albumin ratio 0.0284 , Link index 0.564 ,oligoclonal bands,no virus found. MRI : clumping of the roots and arachnoiditis in the lumbar/sacral zone ,gadolinium enhancement on roots and arachne in the same zone. On March 2000 : CSF OK , MRI OK ( no lesions,no gad. enhancement , no oligoclonal bands ) . On March 2003 : CSF OK but oligoclonal bands are back,IgG test showed previous contact with CMV and EBV , MRI unvaried , no gad. enhancement. On March 2004 : MRI starts to show spinal cord contraction on the lumb/sac region , no gad. enhancement . On Feb 2006 : MRI spinal cord contraction in the cerv.zone .
    IV steroids had a very positive ( but limited to 10-15 days)effect till 2002 . On 2003 they started to induce spasticity .Nowadays they induce spasticity , muscular pain and a feeling of disconfort .
    IV cephyaxone was used on 1998 due to a (dubious and subsequently ruled out) positivity to Borrelia .The result were surprisingly positive ,however a repetition on 2001 did not have any effect . Nowadays antibiotics (taken for an occasional sepsis on 2004 and , more often , for bladder infection ) reduce spasticity (not always at the same level ).
    About B12 and folate, i will ask for a check, and about viral and yeast inf., i believe they were checked.
    No family history of a neurodegenerative disease, and about lupus, i believe it was ruled out .
    Yes , i would be grateful if you went through neurodegenerative disease diagnoses.
    Many thanks ,
    Luciano
    PS. I apologize for the length , but in 9 years you accumulate a lot of details whose importance is difficult for me to discriminate.

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    I hate when posts get eaten by the BB Bogeyman. I'm also interested in the dignostics of neurodegenative diseases. Yeast and Epstein-Barr but herpes? Any specific type or all forms? Do all three show in the CSF?

    I'm also on high dose oral B-12 plus a super multi-vitamin with folate until I find a direct source for that instead of folic acid. And if you're getting blood tests for vitamins get your Vitamin D levels checked also. The disabled are much more likely to be deficient in this and we need to maintain our bones.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    It took me a bit of time to check : IgG test shows contact with HSV1 ( herper simplex ) and contact with varicella zoster . Both show in blood test as well as in CSF .
    I added the information on CSF and MRI tests , to point out that no lesions (plaques ) have ever shown and ( apart the acute phase ) the blood brain barrier was always found intact .
    I hope that Dr Wise will find time to discuss the possible neurodegenerative diseases .
    Many thanks for the comment ,
    Luciano

  6. #6
    Quote Originally Posted by boncialu
    It took me a bit of time to check : IgG test shows contact with HSV1 ( herper simplex ) and contact with varicella zoster . Both show in blood test as well as in CSF .
    I added the information on CSF and MRI tests , to point out that no lesions (plaques ) have ever shown and ( apart the acute phase ) the blood brain barrier was always found intact .
    I hope that Dr Wise will find time to discuss the possible neurodegenerative diseases .
    Many thanks for the comment ,
    Luciano
    Luciano,

    I am sorry for the delay in answering this post. I started posts several times but was interrupted. There is ample evidence that you initially had arachnoiditis from an infectious cause and this has led to progressive neurological deterioration with some evidence for autoimmune complications. The fact that you had clonal bands in your cerebrospinal fluid or multiple occasions indicate that you have antibodies. You also have blood tests indicating prior infections for cytomegalovirus and epstein-barr virus, both of which may be associated with neurological complications. However, these infections may have results from multiple long-term courses of steroids.

    Most of the symptoms that you describe may be related to arachnoiditis although some of your symptoms are unusual. For example, arachnoiditis usually present with burning sensations and only show progressive motor deterioration at late stages. Unfortunately, as you know from your many discussions with doctors, there are no easy answers or therapies. I will keep thinking and looking but don't have any good suggestions for you.

    Wise.

  7. #7
    Thanks for the comments . I have long since realized the difficulty that is faced by neurologists in cases like mine .
    Only one more question : are there in the medical literature cases of TM or myeloradiculitis that in the medium-long term were not static and caused a progressive disability ? I know that this kind of disease is rare , but i find it strange,from a statistical point of view , that the problem never showed before.
    Luciano

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