My movement disorders Dr. suggests a DaTScan, as C/L 100/25 seems ineffective For bradykinesia, gait, and balance. Have taken it for 2 .5 years, currently 3, 4xaday. No tremor, but have urinary problems, handwriting and dexterity difficulties. My main question is what can the test net me? Seems unlikely to lead to effective treatment for PD, or anything else.
I also have neuropathy in my feet, which interferes with walking.
Considering cancelling scan on Nov 11...
I'm having a DaTScan in two weeks. The doc said it won't affect treatment. I've taken Sinemet three times daily for less than a month.
Datscans are better at ruling-in than ruling-out. If your striatum has deteriorated per the images, its probably PD. If it hasnt, it might still be PD.
Id do it. If it "confirms" PD, you can focus your energy on PD treatments, of which there are a fair few besides simple CL. If it doesn't, you arent much worse off.
The two downsides are money and radiation. Obviously money is something only you can evaluate. Re radiation: "The amount of radiation exposure is in the range between a chest X-
ray and a chest and abdominal CT scan." (Per MJFF). So not a lot of radiation, but some. If you havent been exposed to loads of excess radiation, the risk is probably not significant.
Personally, id want to know. On the other hand, if your symptoms are manageable, then maybe not. If it is truly PD, it will probably present itself eventually in a form that is less ambiguous.
Actually, on second thoughts, i would definitely get one. If PD is confirmed (or considered highly probable), start a vigorous exercise plan as soon as you can. Spend at least 30 mins 3 times a week on a treadmill or bike at above 80 percent of your max heart rate. Even if you dont enjoy it.
(Obviously run this by your GP first).
You can start a rigorous exercise routine and do whatever you can even without a diagnosis 😊
I had one - in my opinion skip the DaTScan - PD is a clinical diagnosis. DaTScan is grossly overused and not without consequence.
I must respectfully disagree, see my comments below.
Think of why you get x-rays of your teeth periodically.
Is exactly the contrary actually. PD diagnosis is clinical + Datscan or MRI or both. DatScan is a gold standard in PD diagnosis, most patients (expecially in the US) get wrong diagnosis when a DatScan is not available. In the early stages PD has signs in common with other diseases or syndromes and even an experienced neurologist may have difficulty in differential diagnosis. The risk of being misdiagnosed is greater when you do not have this test. You do 1 in a lifestime and the amout of radiation is very low and not a life risk more than repeated x-rays..
Here are some Physio 's exercises for Hand Exercises for Parkinson's (to Improve Handwriting, Flexibility, and Dexterity) I noticed a distinct improvement in penmanship and legibility, some times I can NOT read something I just wrote. Simple but can show you weakness in arms and hands. Enjoy.
youtube.com/watch?v=Ez2GeaM...
Thanks for posting these hand exercises....I need to do them. They look excellent.
It's plenty useful as you accumulate, bi-annually (every other year) a scan and interpretation. Definitely. I've done it and it is worth it, is the definitive baseline for your thinking on how things are stable or deteriorating in the cells that make the stuff. Gotta have it if you can do so. And yes, I've done so and have had three. Yes you need someone competent to tell you what it means and integrate it into the entire clinical picture. I'm lucky enough to be able to have Mayo do it and between their neurologists, psychiatrists and neuropsychologists, whom I can bludgeon (because I am willing to) into acting as a collaborative team (this latter is essential too), you know where you are, where you have been, and where you might be headed. It's essential as a definitive background and context to judge against what measures have been taken and how they are turning out, so as to adjust directions as indicated. I'd go without meals to get it, and someday I will have to, and I will. Can't say enough about it, and it is a very helpful tool with dealing with the anxiety of it all too. Let me commend it to everyone who can get it.
Before you say no, see my bio, short as it is.
Then you are truly fortunate, assuming you are correct. Hope for your sake that you are.
By the way, everything is radioactive. You have probably consumed far more radium naturally than you would ever obtain with a DaT, and it doesn't matter anyway unless you ingest alpha particles or had gamma knife or some other radical radioactive treatment for cancer, and at that it would be localised. You'll sustain more impact from the necessary and important radioactivity involved in your annual or biannual x-rays for your teeth from your dentist. So get a sense of informed proportion and relax.
But you would know best.
I have had to that scans one to confirm I had PD 12 years ago and another as part of the trial last summer I am just about to have another one as a wind up for the trial. I think I am right in remembering that they give you an injection to protect your thyroid and for general protection with a DAT scan. I was told it was the only way to confirm the PD diagnosis
Hi, DaTScan, is to know if you have parkinson, scaner of brain, is they inject Sam ting to your ven, after 30 minutes you go in to scaner your brain. I didth so. Dr. Say me I have parkinson, right side. IS check up difficult and expensive, sorry my english
All medicines for PD have a maximum span of 4 years and after that the medicines don't work while the doctors keep experimenting various combinations of the same medicines with hit and trial method.
If you are feeling your condition more deteriorated, than you should get this scanning done to know the quantity of damage of cells in the brain. This will definitely assist the doctor to take appropriate action
"All medicines for PD have a maximum span of 4 years and after that the medicines don't work"
Please. Just stop.
parkinsonswa.org.au/what-is...
I would have been happy if you would have reacted after reading some articles on PD
"For some people, wearing-off can begin within one to two years of starting levodopa therapy; for others, levodopa may remain effective for five years or more."
Does not mean
"All medicines for PD have a maximum span of 4 years and after that the medicines don't work"
Do not confuse progression of disease as a reason for medications to "stop working" versus medication ineffectiveness itself. RESEARCH has confirmed this. For example, a study was done in Africa among people with PD for many years who had no access to L-Dopa. When PD was diagnosed many years earlier, these folks immediately developed dyskinesias when taking L-Dopa. There are many more longitudinal studies confirming these findings. Levodopa-phobia must be stop. It is an old way of thinking and is just plain wrong. If you use intensive exercise to slow PD progression, you may well find that meds continue to work for well, without side effects (dyskinesias), for a decade or much more.
Wow, that's an amazing statement. I passed it by my husband's neurologist yesterday. He, of course said it's absolutely not true. Particularly as our own experience proves it wrong. My husband was on the Neupro Patch for 7 years before it stopped working. I don't think anything connected with PD Is definitive.
It can be an unending debate and let's avoid that. Let the medicines work for whole lifespan and all live happy. It's my wish
I’m a PIGD, retired Physical Therapist with Parkinson’s, 20+ years duration. I had to shutdown my clinic due to predominantly non motor symptoms in 2009 . I was one of the first patients to undergo the datscan in Tucson AZ at the U of A.
I’m glad I did because I was developing self doubt assuming that because I didn’t have have any tremor I must be fabricating the malady that was my life. After the Datscan confirmation I found it much easier to succeed with managing the degradation process that is inevitable... an important part of living with out suffering.
I’m not encouraging surrendering but rather an awareness of this inevitability. Life is a process with a guarantee of a term.
It depends on whether you have insurance. It was $12,000, but all but $600 was covered by insurance. If $600 is still too much you might consider what it can tell you. It will say if you have PD (some people such as MBAnderson are not responsive to C/L) or you might (unfortunately) have one of the Parkinsons Pluses (which have shorter expected lifespan). I would want to know about that to organize a bit. So I think the test is actually the most useful one I took...I do indeed have Parkinsonism.
We have been told by Dr. that Datscan is not 100%accurate. If you get a negative result (saying that you do not have Parkinson) doctors do not rely on that.
I got mine in year two at the VA hospital for I think it was $100 on my part. My civilian MDS was very glad I had it done cause it gave them good reassurance of their PD dx for me.
Has anyone in Australia had a dat scan? It has never been offered or even mentioned to me by my neurologist.
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Is this a brain fog? How do I get rid of it?
