Discussions By Condition: I cannot get a diagnosis.

Very Upset, Ready to let "whatever" just run it's course!!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: neurotransmissing
  • May 4, 2009
  • 09:04 PM

I have an appointment to examine me for probable lymph node biopsy; all of my lymph nodes are swollen.

It's my understanding that with the lymph node biopsy, we are also testing for the JC Virus. Does anybody know whether or not this method can detect this virus as suredly as a lumbar puncture ... or is a lumbar puncture the most effective way to put this to rest?

Two neurologists are giving me the runaround about their opinions, one says I don't have PML ... neither has tested me for the JC Virus, so how can they know?! It looks to me, and my primary, that JC Virus & PML are certainly a possiblility ... because this can come in at any time when a patient in immunocompromised for such a long time (years, in my case). There is/are always other diseases and conditions that underly PML ... of which remain unidentified to date, to why would they rule it out having never looked when it can be so devastating?

It can take up to 11 months, I understand, for the JC virus to "incubate" and finally become PML that can then be detected when a patient has all these new developments and "phenomena" that point to PML as a possibility, however remote. Even if they feel the possibility is unlikely, wouldn't you think they would make sure and test for the JC Virus?

Both neurologists have been downright mean about it, and one went so far as to send a letter to my primary saying I don't have PML (this is what a member of his staff called and told me, and further ... mockingly, told me I don't have PML). Hence, I asked her how he can know if he never did the test and it wasn't ruled out?! (Amongst other questions pertaining to incubation time, underlying conditions and so forth.) That's when the conversation ended and she said I would have to ask the doctor all those questions. Why was any letter necessary? Just to belittle or insult my primary?!


They are being so secretive, I do believe they want my primary ... and her direction to potentially find out what my diagnosis is out of the picture and "out of their way." Won't happen!! Guess they should communicate with their patient properly!!

So it sounds as though they have now, in addition, insulted my primary care provider!!! Based on ...... ??? What they can't possibly know without testing!

I'm going to the appointment for the lymph nodes, and the biopsy if that's the case. After that, I quit!!!

Whatever it is, just let it do whatever it's going to do; I will keep physicians only for personal comfort to get pain relief meds and so forth. no straight answers ... no more "cash cow" visits from this patient!! They need to say it, no more vague medical terms that are meaningless and without explanation on their part.

They can just look at this mess later when I croak and tell my family, I'm so disgusted I don't even care what I have anymore. I'm done. Thanks to my primary and the setting up of appointments concerning the lymph nodes, I suspect we will get part of the answer(s) ... if not all.

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2 Replies:

  • I am sorry you are so frustrated- : (get off the sucralose, splenda and aspartame- found in diet sodaseverything really, even in gum and children's vitamins : \read labels and do not eat this stuff anymore it is poison try this before anything else and see what happensread about them on the internet check the symptoms for each one- disregard the Industry(company who made the product) advertisements on different sites that tell you they are safe - there are enough testimonials and people who will tell you on facebook groupsyoutubeand google that they were harmed by them and know because they were where you are and stopped eating them and now are better.Trial and error, they learned what was causing them these problems- now you know too!Good Luck : ( I feel for you - pray sweetie ask for revelations
    founddog 188 Replies Flag this Response
  • founddog, thank you; I'm feeling a bit better about things. I completely agree with you. As a child, I was also allergic to milk. As for me ...Mostly salads. Many people don't realize it, but salads can be flavored in a million-and-one ways (even without any salad dressing, believe it or not) ... with fruits, nuts, berries, raw veggies, leguimes, beans, meats (tuna, chicken, turkey) ... and spices, again I say ... spices. As for meat, I eat chicken and turkey most ... and no larger than the recommended serving, about the size of a playing card and about 1/2 inch thick; red meat, I rarely eat ... when/if I do, it serves as a flavoring or condiment and is never a main course. I take calcium supplements, because the deletion of dairy really showed a difference; I drink non-dairy dry/powdered milk, plenty of water, and 100% pure fruit juices. No sugar at all, no sweeteners. For sugar, I use fresh fruit or 100% pure fruit juice. I take it easy on the fruit juice, only the actual amount per serving and no more (even the 100% natural fruits and juices can impact blood sugar when overindulged in, without the balance of the other foods). No white flour products at all, and no salty nutrient-deficient snacks ... this pretty much eliminates the "faddy-fattie-formerly-me" snack items altogether (potato chips, Doritos, all that stuff similar ... ) I'm over the red meat, but I must strike a happy medium with other individuals, at times, that don't share my lifestyle eating habits ... so during those times, the majority of my plate will be veggies with the meat in bits here and there as a flavoring only. On occasion, yes I cheat!!:cool:My cheats are composed of Cool Whip, over-indulgence of walnuts (in the cool whip with blueberries, typically ... which I hear to be extremely healthy and good for the immune system, that particular combo, but FAR too many walnuts blows it) & fruit juices, as mentioned above (sugar craving) and cheese .... oh how I love cheese, all varieties (dairy craving) and (flour)-fried stuff, like fried porksteaks or chicken. Cheats become less and less as well though. Why? Because once eating habits are in place, those like mine that may seem so "bland" to others ... are quite the opposite to me now. Eating like I used to, I now find difficult and even impossible at times; the food is far too rich and it actually makes me sick ... and so rich, it's "yucky" too. Initially, it was very difficult because I always felt like I was starving ... I really indulged on meat, red meat, all of it, huge portions, main course. So I felt as though I was eating all day!! As it turned out though, I was actually only eating about six times a day, of which I understand 4-6 small meals per day to be recommended. As time went by and I learned to use spices and more filling things, for example, more beans, seeds, leguimes (a lot) and a little meat mixed in, just a tad, and the veggies ... spiced 'em up ... I got that "full" feeling back. Walnuts and flaxseed are very healthy, but use care ... both can be blood thinners so they/each/either or both/same should be consumed, if I'm not mistaken, at no more than one tablespoon per day. For those that struggle initially, I understand that wheatberry is very filling! Personally, *I don't know* because I just found out and I'm established in my habits ... but I would like to try it (after investigation, if it's applicable) because I understand it is very flavorful, similar to cereal ... you eat a small amount and it "swells" in your belly (ingest slowly). These days, I eat four meals a day (and they are very lacking). However, being sicker within most-recent three weeks with nausea and other "phenomena," I'm lucky to get two BITES a day in on some days. That's off-topic though because it's due to the medical and not typical (difficulty swallowing, painful chewing, etc. ... oh ... and now Adderall XR, the nightmare I'm putting to bed!!). "Normally," I eat 4-5 small meals per day. Hope "normally" will be arriving again very soon.:confused: I started small (far too small, most likely), but I have arrived. My cheats don't even appeal to me much anymore, they are rare; then after, I feel icky ... I try to do the "oh ... just a little bit" thing, it's not working too well. Yes, these are acquired tastes ... plural, something and everything for all with the right flavors and combinations (and the rejection your body and your stomach will feel once the junk is away awhile and you consume it by "slipping" will most certainly be acquired as well if given enough time; ultimately those problems will take care of themselves; well, speaking for myself, it certainly happened to me) ... which is why a firm decision and commitment is in order for me, along with looking up healthy dishes. But mostly, with a wide-enough variety of veggies, beans, fruits, (veggie drinks are better now too, BTW; when they first came out ... ick) water, so many spices ... I'm happen to believe I have much more variety now! Chicken, tuna, turkey .... all those already mentioned with the millions of spices available, nothing has to taste the same and every meal can be a treat. What I used to think of as treats now make me sick, the body actually changes. Eventually ... I didn't care much for anything I ate via my old lifestyle. I was tempted for awhile, if it was here in the house (and cheated, and paid) ... but now, any of that junk can be here and I won't look at it twice, only once to remember how miserable I felt the last time I ate it/similar! And ... vitamin supplements; One-A-Day for me, as my PCP instructed, along with Calcium & Evening Primrose Oil (ladies) in addition. What I've found best is spices, spices, spices ....... there are so many! It took me nearly 10 years to get here, eating as I do as a natural lifestyle. Very important: this is not a diet, it is not temporary.These are eating habits, a lifestyle with no thoughts or obsessions about weight loss ... or flavor/variety loss: permanent.It was acquired 'piecemeal' over a very considerable amount time (and as you can see, I wasn't the best egg at accomplishing this ... took me QUITE awhile). Okay, enough ... I'm hungry now. :)
    neurotransmissing 145 Replies Flag this Response
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