Discussions By Condition: Rare Disases

Progressive Multifocal Leukoencephalopathy (PML)

Posted In: Rare Disases 2 Replies
  • Posted By: neurotransmissing
  • April 22, 2009
  • 08:15 AM

I just received my diagnosis of PML. I was just wondering if there are others, or if someone may know of another (a loved one or friend perhaps), that has been diagnosed with this.

I'm curious about the experiences of others ... the progression, how fast did each part evolve, the nature of each, loss of cognitive function (how rapid, how extensive), nursing or hospice care that may have been needed, etc.

Of course, each case is individual ... I'd just like to know about other cases and get some sort of idea of how those may parallel with mine.

All information is immensely appreciated ... more than you could possible know.

Thanks!! :rolleyes:

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  • Okay, this has since changed. Further ... with the lymph node biopsy, the lumbar puncture probably won't be necessary. "Possible" PML now ... I am still seeking others with PML, if there's anybody out there. *sigh* :rolleyes:
    neurotransmissing 145 Replies Flag this Response
  • Okay folks, frankly ... (hope I'm not in denial, because it's not ruled out yet) I don't believe I have PML. Reason being, I have not lost any intellect ... nor does the memory loss pose as much a problem lately. I remain forgetful, but not to the degree that it was. I see slow, consistent, improvements in my brain/body function. Although I still experience almost constant headaches and overall body pain, I am extremely weak, not very productive (but more than I was), and my vision is impaired ... none of these things have changed significantly enough for me, personally, to believe this is probably PML. Yes, it's something chronic, no doubt! This is where things stand at present, as far as concrete diagnosis:Extensive Leukoencephalopathy - Confirmed & Definitively DiagnosedDemyelination (Non-specific in nature/cause) - Confirmed and Definitively DiagnosedSwollen Lymph Nodes Throughout (of much concern, those on both sides of the neck - Confirmed, Still Awaiting Diagnosis/CauseHashimoto's Thyroiditis - Confirmed, But Unable to StabilizeGiven the fact that my thyroid function has gone haywire, I see that poor thyroid function can also cause neurological conditions and permanent damage such as mine. Seems only common-sense to look into the thyroid being a possible (and now, to me, a probable) culprit, since it is, in fact unstable (from one end of the spectrum to the other) for at least several months now ... and being found to be the case just recently. It changed within two weeks; after having my blood drawn (normally done every two months) and having it change three times, then going to another specialist only two weeks after the draw just prior ... and reading on the complete opposite end of the spectrum, I feel that my thyroid may very well be a culprit, if not THE culprit in this neurological mess. For years, I saw my endocrinologist to thoroughly maintain the stability of my thyroid function. Following, I "consolidated" my needs to that of my PCP, being an internal medicine specialist; since my thyroid function was consistent, my PCP tested my TSH every two months and supplied my script. It is very difficult for me to get to appointments, as most times I am unable to drive, my eyes are poor and everything is blurry, I've lost peripheral vision many times while driving, the overall weakness and pain, etc. Other people have to drive me to my appointments and accompany me. I also have a caretaker that manages my home/housekeeping (all-inclusively), finances, picks up my prescriptions ... and at times, must take off work to do so! Also, I "consolidated" this way pending any further developments. Well, those have arrived! Time to get back to the endocrinologist, obviously ... regardless of the rest that remains pending. The good news is, I am on disability; I am eligible for rides to/from appointments, so that is quite a relief!! Although I have a caretaker, I do "what I can when I can" consistently and that's just the way it is. A productive day doesn't consist of much, comparably, to the formerly "healthy me" but I have learned to accept that and no longer make "worldly comparisons" by looking at the production capabilities and achievements of those I see and that which I know ... which helps tremendously; it's okay to be different than the "norm" ... it is what it is. I have developed many coping strategies and terms to justify acceptance of the facts, of which I am powerless ... mostly through my faith. I no longer feel guilty for watching a good movie while someone else is running about cleaning my house, doing my laundry, doing my shopping, picking up my prescriptions, and handling my many other miscellaneous matters, along with providing my transportation. This personal accomplishment is one I am proud of. I cannot help what is, or what is not; I no longer torment myself for conditions and circumstances that are far from my control. So that's my way now ... "I do what I can when I can." "My best is good enough." "I do not have to understand or question "why" or "why not" because it's not up to me. It's all in God's hands, and that's where I choose to leave it, and in doing so ... I do what I can when I can to the best of my ability and leave the rest up to Him. I am going to move forward and do my part, then it's in God's hands. I cannot remain still and do nothing if I have the ability to do something, anything at all, no matter how small. Summary or in short version, this is how I cope and have found peace in my day-to-day life. I had to make choices and conscious decisions.
    neurotransmissing 145 Replies Flag this Response
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