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Thread: my doctors dont knew reason why I am immoable please help me

  1. #1

    my doctors dont knew reason why I am immoable please help me

    Hello , I am from Europe ,I am male and I am immoable (paraplegia) before 5(2002) years but before 8 (1998) years it was diagnosed T-ALL-L2 as per Fab ...After treatment ALL-L2 (about 2 years,all procedure of treatment I send you) I have been good and my health conditions was good but after two years from finished treatment ALL-L2 I become immoable next 5 years ...I am immoable from waist downward(paraplegia). I have no feeling to urinate and bowel. I am having catheter permanently.I dont take any medicine...Iwould like to send you MRI images and my last dishcharge summary from hospital...my doctors dont knew why I am immoable ...I am grateful in advance ...

  2. #2
    As I understand it, you have been paralyzed since 1998 but don't know why?
    Were you in an accident?
    Did you have an infection?
    What diagnoses have been explored?
    What "treatment" did you get?
    What country are you in?
    Have you been to a formal SCI inpatient rehabilitation program so that you have learned how to control your bowel and take care of your bladder other than an indwelling catheter? To take care of your skin, dress, bathe and transfer yourself independently?
    What is your ASIA level of injury (AIS) and category?

    What is ALL? What is Fab?

    (KLD)

  3. #3
    ALL =ACUTE LYMFOCYTIC LEUKEMIA ...this is my first diagnosis and I have paralyzed since 2002 after treatment ALL ...I have no accident ...alredy one day I felt that my legs jerk and I lose sense in my legs gradually at once ...I am from Montenegro small naval country ... ...I take care of my skin ,dress ,bathe and transfer myself independently ....I have no control my bladder and I put Foley catheter permanently...and urinary can not leakage if i dont put catheter in my bladder ...I am immoable from diaphgram downward ...I have no feeling in my legs and feet .I have no feeling to urinate and bowel.
    and I am sending you describe lastMRI images
    Clinic Centre of Podgorica(Montenegro)
    radilogy diagnostic centre
    Date of chek up:
    04/08/2003
    FINDING OF MR TOMOGRAPHY
    Radiologist's findings:
    MR check up of complete spinal cord
    There have been done T1 T2 STIR LNG(sagital t1 trasversal tomograms)
    No convincing signs of Leucemic inflitrates on vertebra which diffusivly little bit unhomogeneous,that is with zones of hyperintensity and t1 and t2 sequencees.
    Nor on spinal cord there are convincing signs of pathologic changes...
    Conclusion:MR is not indicating significant pathologic change.
    .................................................. ..............................
    I have been paralyzed since 2002 ...but doctors dont know why ...as you can see from FINDING OF MR TOMOGRAPHY ...I would like send to you mr images if you have time to look mr images ...thanks in advance ...

  4. #4
    Although rare, ALL has been associated with paralysis...either due to the disease process itself, usually thought to be because the blood supply is interrupted to the cord causing a cord stroke (usually due to small blood vessels being clogged with leukoblasts) or due to side effects of the drugs used to treat the ALL. We do not need your MRIs.

    It is unlikely that any therapy or treatment could reverse the paralysis at this point, so your major focus should be on learning about spinal cord injury and how to keep yourself healthy in spite of it. Is your ALL in remission?

    Intermittent catheterization, rather than an indwelling catheter, is much healthier for you. Do you do a regular bowel program to empty your bowels or are you using a diaper? Have you had any pressures ulcers? Do you have any spasticity? Are you totally independent in your use of a wheelchair including transfers? Are you driving?

    (KLD)

  5. #5
    Yes my ALL is in remission alredy 8 years ...I dont use diaper and I empty my bowel every 3 days with Dulcolax ...I had pressures ulcers but I have no ulcers now ,only scar ...No I dont have any spsticity ...Yes I am totally independent in my use wheelchair including transfers ...No I am not drivig because I have no car but I plan to buy it ...P lease can you tell me why indeweling catheter is healthier than intermitten catheterization ...( I ask that because intermitten catherization make me free and using permanetly catheter I can go out ) ...I have a problem with sexual function and it is my the largest problem ...and I have big problem with circulation ...can you tell me how do I solve this problems ...in my town and in my country there are a few immoable man ...thanks very much ...

  6. #6
    Intermittent catheterization (if done correctly) has significantly lower rates of UTI, stones, bladder cancer, and damage to the urethra that does the use of an indwelling catheter. You can go out and do intermittent cath. You don't have to wear a bag all the time with intermittent cath either. It is easy to learn to cath in your wheelchair or on the toilet at your level of SCI.

    What have you tried to achieve an erection? Viagra? Levitra? Cialis? Vacuum pump? Penile injections?

    What kind of problems with circulation? It is common to have leg swelling. The use of compression hose (knee high) will help with this as well leg elevation at night. Otherwise there are not really any circulation problems associated with SCI.

    (KLD)

  7. #7
    I tried cialis and cialis did not help me than I tried vacuum pump and pump help me but in my country dont exist pump with ring and I could not preserve erection...
    Oh ,I did not know that intermitten catheter is so bad and it is big disappoint for me beacouse indewellin catheter protrackt my live(sexual live ,exit outside ,reliontship ,intimacy and other things) and I used indewellin catheter 4 years but im my country dont exist silicon catheter only latex ...can you tell me which indewellin catheter is the best ...and can you tell me do I late for bladder program ...thanks ...

  8. #8
    Sorry ,beacouse I dont understand which catheter is better intermittent or indewelling for me ...

  9. #9
    i'll just jump in here. have had foley catheter for 21 yrs. few probs and much more freedom. on the other hand, my friend did intermittent, had high level uti's and died of bladder cancer at age 40.

    my urologist did intensive research, consulting sci urologists and the conclusion was bladder cancer is not a greater risk w/foley. i, personally, have seen my intermittent friends have more trouble.

    i know this is not the opinion of many sci specialists. but it's my life and i know what i have seen and experienced. i honestly don't see how sticking a tube in your urethra 4 times a day causes less risk. every time you do that, you run a risk of bacteria entering the bladder.

    as for wearing a bag, compared to finding a place to cath, no brainer for me. plus i can drink all the water i want.

  10. #10
    For the OP, while intermittent cath is better for you, if you choose to use an indwelling catheter, then at least see if you can get a SP catheter. This is better for your sex life, and will put you at less risk for damage to your urethra with time.

    If you don't care about having a urine bag hanging off you all the time, and don't care that you will be continously colonized with bacteria, then it may be easier for you given that you have so few resources available to you in your country.

    (KLD)

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