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Neurological Disorder - Need Help!

Posted , 6 users are following.

ringo77964
ringo77964

My sister (64) has been suffering from a rare neurological disorder which caused limbs numbness, muscle tight, spasm and unable to walk, she has been admitted to hospital since August 02, 2015, the panel of doctors did all kind of blood test, MRI, Pet Scan and concluded her symptom was neither caused by stroke nor cancer, as the doctor was unable to diagnose the disease, no medical treatment was given except physiotherapy and occupational therapy, later she was given globulin injections and starting October  the doctor sent her for blood dialysis, so far she did 4 and will complete the first round of blood dialysis by end of this week. 

Obviously she is frustrated, depressed, helpless and wanted to give up, we are replying on the doctor's expertise and experience but as 11 weeks have gone by, I feel I should reach out to see if anyone can help to provide precedent case and treatment, or direct me tod the right person for inquiries, any advice will be much appreciated, 

0 likes, 18 replies

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  • ptolemy
    ptolemy ringo77964

    Posted

    Your sister could have an auto immune disease such as MS. About ten per cent of people cannot be diagnosed with an MRI scan for MS for example.
  • Tezes
    Tezes ringo77964

    Posted

    MS is diagnosed by a lumber puncture procedure, some changes can often be seen on a MRI brain scan. Has your sister been seen by a neurologist who specialises in movement disorders ? 

    Some neuro conditions cannot be diagnosed with blood tests or scans for e.g dystonia which can cause the symptoms you mention, worth asking 

     kind regards

    • ringo77964
      ringo77964 Tezes

      Posted

      Not sure if there is a neurologist specialize in movement disorders among the panel of doctors that are taking care of my sister case but we are planning to meet with the doctor in charge to find out next steps after the blood dialysis is completed. 
  • lynne69494
    lynne69494 ringo77964

    Posted

    Did the dr tell you why she was having dyalasis, did he mention her kidney,s or something to do with her blood, although they say they cant id the disease, they must have a reason for giving dyalasis, odd. Does she feel improved at all with treatment so far, l think you need to ask for appt to talk it over fully with consultant, including about  advice given. 

    Hope she gets diagnosis and improvement soon

    • ringo77964
      ringo77964 lynne69494

      Posted

      It is our understanding that blood dialysis filters bad cells and only good ones circulate back to the body, it has nothing to do with her kidney as far as we know. Yes we are seeking appointment with doctor in charge sometime next week. 
    • ptolemy
      ptolemy ringo77964

      Posted

      Dialysis removes waste products and excess fluid from the blood when the kidneys stop working properly. Usually the blood is diverted to a machine to be 'cleaned'.
  • sara6789
    sara6789 ringo77964

    Posted

    Hi my name is Sara, I'm 29 years old and was recently addmited to hospital with what started as sudden pain in my upper back but turned into numbness in my right side cramps spasms fatigue and muscle weakness and difficulty walking. it's been over a month and it's not eased at all. They gave me all sorts of tests but came back all clear then an mri and saw a faint grey mark in my spinal canal they did another mri with die in my blood and it turns out I had a mass in my spinal canal made up of a tangal of blood vessels that are compressing and damaging my central nervous system, It's called a spinal artieriovenous malformation (might be spelt wrong) or spinal AFM but anyway this hemorrhaged and caused all the symptoms. It's quite rare and the specialist I was seeing had to ask another specialist to confirm but all the symptoms your sister is experiencing sound very similar. I was also told everything from a virus to injury to cancer and ms. Finally they know what it is though and are going to do an operation to remove it before it causes paralysis.
    • lynne69494
      lynne69494 sara6789

      Posted

      Glad they found the cause and it can be put right, good luck
    • ringo77964
      ringo77964 sara6789

      Posted

      Hi Sarah, 

      thanks for sharing, the doctor already ruled out spinal problem at early stage but I will double check with them next week when the appointment is set up. Lately my sister having trouble eating and the mouth muscle starts to tighten causing difficulty in ponouncation. 

      Best of luck in your upcoming treatment!

    • sara6789
      sara6789 ringo77964

      Posted

      I hope they find out what's causing her illness. It's horrid not knowing and constantly worrying and everyone telling you there's nothing wrong when there clearly is. All the best to you and your sister.

  • ringo77964
    ringo77964

    Posted

    After assessing the dialysis result (no improvement) the doctor stopped the 5th dialysis and told my sister today he will use steroid to treat the disease. This is a shock to us as it sounds like chemotherapy, we are concern about the impact of using steroid to her body. Can someone advise if it is the right thing to do, and what are the side effect of using steroids to the patient? We are meeting the doctor Monday but would like to get as many information as we could prior to the meeting.

    Thanks

    • ptolemy
      ptolemy ringo77964

      Posted

      I have been taking steroids for over eighteen months for PMR an auto immune disease. They really are a wonder drug and I would be in a wheelchair in a care home by now without them. People take steroids for all sorts of things such as Lupus, MS, vasculitis, Rheumatoid Arthritis, Crohns, asthma ... I am sure there are dozens of other conditions too. Yes like virtually all drugs they have side effects, but if they work they are fantastic. 
    • lynne69494
      lynne69494 ringo77964

      Posted

      Agree with  posts whove replied to you, but have they not given name of disease yet, steroids are not chemo,although l was given a course of steroids after every session of chemo 6 in all,  theyre used generally to build up areas of the body that are not responding well to other meds, as with your sister often with good or great results, They can have side affects, but are not given easily, only if essential usually,and most seem to cope with whatever side effects and preferable to what theyve been suffering previously,  and can be used over a long period of time, many years if  in moderate doses.  good luck to her
  • Tezes
    Tezes ringo77964

    Posted

    What is her diagnosis ?  What exactly are they treating her for ? Can't answer your question without that info

    Steroids can be very helpful they reduce inflammation etc, you need to come off them slowly after the treatment, it is not chemotherapy.

     

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