In no man's land

Greetings, y'all. Here's the pickle I'm in: My neurologist said my DaTscan shows an 80 percent likelihood of PD and 20 percent of something they can't figure out. I'm stuck in limbo over here, as I'm a poor candidate for any of the meds or even trials aimed at PD. I wanted to try inosine, but she said that has worked only for people with 100 percent PD. She said I should be glad, but I find this depressing as hell.

She says some of my symptoms are not indicative of PD: the abnormality in my noggin is all on the right side, and my shaking is also on the right side. Apparently with PD, abnormality on one side of the brain leads to problems on the opposite side of the body. Also, the PD meds backfired when I tried them (Sinemet, Artane, I forget what all). Same thing when I tried neurontin and lyrica. I feel completely hopeless.

If I didn't have to walk the dog I'm afraid I wouldn't get out of bed. That won't do. I enrolled in a master of fine arts program at the university and I can't be lying about but it's a bigger battle every day.

Advice, brainiacs? Have you heard of this mixed-diagnosis before?

16 Replies

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  • Maybe look for a second opinion?

  • you sound like me i get out only to take my dog out too i m very frustrated like u

  • I don't want to stay home, but I don't want to go out either. !?

    What kind of dog do you have?

  • its my moms tiny spitz

  • What are your other symptoms? Apathy? Can't sleep at night? Loss of smell? Small handwriting? Fear and anxiety? Dizziness? Constipation? Weak voice? No sense of thirst? Can't concentrate? Can't walk to another room without forgetting why you're going there? Getting really annoyed at small things like someone doing you wrong in an internet forum?

  • Zawy,

    Are all those symptoms of idiopathic PD?

    I've never seen such a long list if it is.

    John.

  • Yes, it's an accurate list. It's not just "hear-say" from web pages, but I've come across research papers that have indicated each of these. I left out depression, slow responding, excess saliva, a distinctive walking gait, expressionless face, tremor, and hunched walking. OK, now I think that's a nearly complete list. Some overlap, like apathy, slow response, and expressionless face are very much related, likely having the same or similar deep cause from the lack of dopamine. Likewise dizzy, balance, gait, and hunched posture are all likely "balance" problem from lack of dopamine, or otherwise dead neurons. Of course you are not likely to notice all symptoms. I'd guess only half of us are able to imagine that we have half of them. I say "imagine" because they are also symptoms of an aging brain, making me wonder if what people think of as an "aging brain" is like an undiagnosed Parkinson's-like problem. Researchers dedicated to keeping a younger brain say exercise is the gold standard, so it's not an accident that exercise is important in PD.

  • My understanding is that PD doesn't show up on a DaTscan. It's purpose is to eliminate alternatives. My DaTscan was clean confirming I had PD based on observed symptoms (at rest tremor, weak voice, lack of balance).

    One test for PD is to see if PD meds work, e.g., Sinemet. The fact that they didn't work for you and the fact that your DaTscan indicates something else suggests to me you don't have PD but I am not a Doctor.

    If I were you, I would get a 2nd opinion.

    Sorry

  • Thank you!

  • I got a "second opinion" from Mayo Clinic. Initially they said they "weren't convinced" I had PD.... and when I said "how do you come to that 'crazy' conclusion?" They said "tremor frequency is wrong." However... following a DATscan they came back with a definitive statement (backed up with brain images)... "You have reduced dopamine in your brain... you definitely have Parkinsons..."

    If the purpose of a DATscan is to determine dopamine levels in the brain... and if reduced levels of this substance is proof positive that you have PD, how is it that your neurologist runs the test and doesn't come up with the same conclusion as mine at the Mayo Clinic? Beats me, maybe is the "amount". who knows. A PD diagnosis is no party, and some people with PD don't have beneficial response to Sinemet, which is, I think, the Gold Standard in determining that you do have PD. On that score, Sinemet showed definite improvement in symptom reduction in my case. So maybe the Sinemet PLUS DATscan evidence led for the absolute conclusion I have PD.

  • FMundo... Good Question.

    From Google… (one of many):

    Q: Can DaTscan diagnose Parkinson's?

    A: DaTscans cannot diagnose Parkinson's disease. These scans are used to help a doctor confirm a diagnosis. DaTscan has been used in Europe for over 10 years, where more than 300,000 have undergone the procedure. The results of a DaTscan can be used to help rule out other diseases that may have similar symptoms, like essential tremor, especially for individuals early in the course of their disease. However, there are several other diseases, multiple system atrophy (MSA) or progressive supranuclear palsy (PSP), which can also produce a loss of dopamine in the brain. A DaTscan cannot differentiate between those diseases and Parkinson's.

  • This clarifies things a lot for me. Thanks.

  • 4000 nights

    It is incorrect to say that PD doesn't show up on a DaTscan. It's a scan showing dopamine levels in the brain. A negative datscan suggests no PD and positive you do have PD or one of the Parkinson plus diseases ie multiple system atrophy (MSA) or progressive supranuclear palsy (PSP).

    An MRI brain scan is done to eliminate alternatives eg Tumor MS The Datscan is used for Parkinson type diseases.

    "The scan by itself does not make the diagnosis of Parkinson's but it allows us to identify patients who have loss of dopamine, the major chemical responsible for the symptoms, from those who have no dopamine deficiency Eg essential tremor ( hence why john pepper should have one)

  • Thanks -- very helpful. So far she's sure I don't have MSA or PSP. So my big question is, what the heck is it, then?? I'm in the dark.

  • Hi Beckey,

    my neurologist wouldn't give me a DAT scan as he said it was too vague.

    My original diagnosis was Parkinsonism or Parkinson's like symptoms. I was convinced I had MSA. I think because I reacted well to azilect he was a bit more confident that I had Parkinson's. It's all a bit subjective for my liking.

  • Bit subjective - yes and so we can have people with genuine Parkinson's and those misdiagnosed thinking they have PD. Diagnosis is still all on symptoms. If there was a blood test or similar that confirmed it we probably wouldn't have had the recent unrest on the site. It's also why MJFox and others have put a lot of money into finding markers that confirm PD diagnosis.

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