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ellaangel2

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ellaangel2 last won the day on February 22

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About ellaangel2

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  1. I have read in many places that MSA and PD + will initially show an abnormal DATSCAN, however definitive diagnosis of MSA & Pd+ may take years to confirm after initial diagnosis of Parkinsonism from DATSCAN (as Adam's MDS stated.) This does not sound like what your MDS is telling you NN..........? Sounds like he is saying people that eventually get dx'd with MSA have had "normal" DATSCANS....... Now, I'm confused........
  2. jb - What you said about the past, is exactly how I feel about my childhood. Spot on.
  3. Adams, your MDS is spot on to what I have read and understood. "Parkinsonism" is the "umbrella" term. (Regular) Parkinson's is under the umbrella of Parkinsonism as is MSA, PSP, etc.
  4. Dr. Okun, Is it likely to get sensory changes before motor symptoms of Parkinsons? Or do motor symptoms typically occur first?
  5. Hello everyone, Haven't posted in awhile, been busy watching the snow fall. Got almost 2' here! I like winter though, so I welcomed it, this is how Winter should be in New York. I think it is one of the most beautiful seasons. I so enjoy the change of seasons and feel slighted if I don't see them all to the fullest. Although, Fall is my very favorite, Summer my least. Jb, My childhood seems to come up a lot lately in my mind too. Funny, you should say you were looking back 50 years, I just did the same thing the other day.......thought to myself, "gee, 50 years ago we moved into the house I live in now." I was 9 years old. Seems my childhood comes up a lot in my mind lately. I enjoy thinking about it. I like your story about the hockey game and haircut nights. It's 1:30am, one of those "sleepless" nights, I'm afraid........
  6. In my opinion, that's a "stretch" as to the explanation of where Linda is............
  7. If one got PD from Agent Orange a DATSCAN would be normal? . I don't understand why Agent Orange would affect the DATSCAN. I would think no matter how one got PD, the DAT would not be affected
  8. Thank you so much for your kind words Christie.
  9. I had some very alarming symptoms; pin prick and electrical sensations randomly, all over my body, every few minutes, all different neuro type sensations. Had spinal tap and many, many other tests. About a month after these sensations started, I started with an (internal) tremor, in right calf of leg and sometimes in my stomach/chest area. Dr. could find no medical reason for any of my symptoms. Neuro gave me Gabapentin for symptom control, it worked for pin pricks, but not for tremor, which happened only at rest. After much research, Parkinsons looked very probable to me. When you are experiencing symptoms that no one can see, it is very hard to get respect or even the proper responses from Dr's, let alone friends and even the people closest to you. It all was the perfect storm for my breakdown. I was so sure that I had PD, I joined support groups, came on line and did lots and lots of research. I actually lived (in my mind) like a PWP. I experienced the grieving process and all. Went to 2 MDS, was hard to get in to see them, but with great effort, I managed somehow. Of course, no visible symptoms, no diagnosis. Can relate to what a lot of you have gone through and you people have visible symptoms. Tough stuff. It was so frustrating. PCP drs. were useless and utterly rude about it! Believe it or not, I lived many years believing I had PD, after all, it is slow progressing and I had no other medical answer, these sensations and tremor had to be caused by "something." Went to counseling for a long time, lost some (non-friends) along the way, it challenged some of my true relationships, I basically struggled through life, even became suicidal at one point when I was at the bottom of the "well." It was only after 6-7 years with still no visible signs of PD that I am coming to realize I (probably) don't have PD. I say "probably" because somewhere very deep down, I still am not completely convinced, it is hard to change a way of thinking after so many years of believing it. I feel like I understand PWP, because, you see, I lived like a PWP in my mind for so long. So, that is my story. I am still on this site because I feel a connection and a sincere interest in PWP. I am not so sure I am welcome on here though. Actually, I completely understand if I'm not. Just let me know, and I'll go away.
  10. I did do that, saw a MDS 1 year ago........no diagnosis, no "visable" symptoms. Will not give me c/l challenge either because no visible symptoms to justify challenge test. So, still no visable symptoms today, I know, I know.........I "probably" don't have PD. Don't want it, just would like to know what I do have if I don't have PD. Is that too much to ask? I know quite about about PD, if I wasn't so old, I think I would go to medical school to become a MDS, I sure have a good headstart! In the medical community's defense, with no visible symptoms and all tests neg.........how can they diagnosis? That is why I am on 2 anxiety meds and have no finger nails. Doing better than I was though, at least out of the "bottom of the well." I still "dance" around that "well" occasionally, but am determined never to fall in again, it was hell getting out!
  11. Good suggestions Stump, although, I believe the PD+ diseases would have shown a positive DATSCAN.
  12. Yes, but it is a bit complicated..........I was only 6 months into what the Dr called "soft symptoms." The Flora Dopa Pet Scan can show false negs when done too early in motor symptoms......I recommended it to NN because she is years into her symptoms. Although, one thing I forgot to point out is this scan is not always covered by ins, because it is not "officially" FDA approved for PD and some insurances consider it "experimental." I had mine done in NYC, Dr. gave me a "discount" because I was paying out of pocket and charged me $3500, I had it done because, to be perfectly honest, I was having a nervous breakdown, so it was worth it to me to get an answer, only to find out a year later, false neg, because so early in symptoms. I was not told that at the time by Dr that wrote for this scan in NYC. This (false neg) caused me to have another nervous breakdown. No judgment please........"until you've walked in these shoes." Can't afford another scan. Every insurance is different, I have heard of some covering the scan. It is worth checking out for someone like NN, having many years of motor symptoms and having so many (false) negative Dats.........just a thought, can't hurt to ask.
  13. NN - Has Dr ever suggested a Flora Dopa Pet Scan to you? If read by a very experienced "brain reader" supposed to be very accurate. I can't get over 5-6 neg Dat scans and a neg for you DH too........that is truly (just about) unheard of from what I have read. btw - I do understand the need to "speak" about things.......cannot keep things inside too long either.........and what better place to do it, but here. Prayers for you.
  14. I am not so sure Linda "departed" she may just be taking a break, we all need that every once in awhile. I admire her for starting a thread to discuss an off topic subject that she wants to share, she welcomes like minded people, noone is forced to read it. Linda is a very smart woman with a lot of sophistication, with a very kind and accepting heart. She holds tight to her beliefs but does not cram anything down other's throats, she respects all of us and she deserves our respect.
  15. Starting to get very concerned about Linda, has anyone heard from her? Linda, you are entitled to a "break," but please, just let us know you are ok.