Those are the words that my neurologist said yesterday to my husband and I.
I was diagnosed in January 2012 after my family doctor was sure my tremors, muscle stiffness and unsteadiness was nothing. In the past 2 years I've quickly titrated up to 2 tabs of Sinemet every 3 hours which was ordered 4 months ago. My wearing off periods are getting more frequent and lasting less .
I am extremely frustrated because it seems to me that my doctors keep calling this atypical which then I feel like a fake !
Has anyone else had this experience ?
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Annie11
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Thank you for your reply. This is coming from the second movement disorder Specialist in the same clinic. I feel very afraid and alone even though I have awesome support at home and great friends . She offered a dopamine pump which will be placed surgically..I declined at this time. She also encouraged me to play around with my Sinemet. 4 months ago she told me I had Lewy Body and PD. Now because of a combative test which I retook in Feb. results were compared to baseline that I did 2 yrs ago..results were not much different so now after telling us about Lewy Body she is declaring I don't have it. She just tells me I have atypical PD
How about trying another clinic? Is that doable for you? My reaction to your description of your neuro is, it doesn't inspire much confidence. Have you had a DaTscan or repeat DaTscans? Has your doc referred you to physical therapy or recommended an exercise regimen?
I'm also atypical, and I know how frustrating that can be. There are promising treatments (like inosine) I can't take advantage of because they haven't been able to pin down where the problem is coming from. But in one of my early appointments, one of the Fellows suggested I try tai chi. So I found some videos on Youtube of tai chi for beginners and followed them at home. Then I added yoga at night. Over a few weeks time it made a huge difference.
But it's your doctor's job to be up on such things and to work with you to develop a good regimen, not to say, "Well, that's it, I have nothing more in my bag of tricks to try on you."
Keep your hope up u are in early stage if you have had PD for 3 years. I have had it for 9 years and am better today than i was 5 years ago. your doctor is a joke get a new one a good one will never give up until the day you die. what age are you.
what dose is your sinenet 25/100 or something else
that dose seems high
You need to get a lot of exercise at least 1 hour a day not easy but intense exercise
the stronger and the more fit you are the less meds you will require
i do crossfit 5 or 6 times a week
google crossfit and if there is a crossfit gym near where tou live visit them
they will be glad to help you on your path to be coming fit
All great suggestions. Also, ask your movement disorder specialist for the name for your specific variety of atypical PD. You need to know this in order to understand your prognosis.
Yes. I am in the same boat. I have had a very uneven response to all PD medicine I've tried dating back to the beginning of my treatment. And now, I've seemed to reached the max daily amount of c-l my body can handle. One extra tab of Sinemet and I can get 6-8 hours of dyskenesias. It's no fun, but that it's the way it is. Frustration is normal. Each of us must find our own way to cope with it.
Find a neuro-physiotherapist and book a couple of sessions one to one. If you have to go private it's worth the money for good advice and tuition. You really need to keep moving to stay mobile.
I do truly believe that groundbreaking treatments are around the bend. If we can hang in there for 3 or 4 years I think we'll witness -- and benefit from! -- some things that are in trials now.
Metacog -- In another post (which I can't locate) you mentioned some natural products you take to help with sleep. Having not slept for what seems like the past 4 years, I am very interested in them. Also wondering if you take any prescribed sleeping pills in addition to them. I observe that you study things out carefully.
Hi Linda, I was finally diagnosed for PD 2 years ago (by a couple different doctors/opinions) and have managed to avoid the gamut of prescription meds thus far (fortunately). Although a range of worrisome symptoms - together with the pace at which they seemed to be progressing - had me both panicked and depressed initially, I've pretty much managed to get them all down to a murmur since then (except for periodic 'turbulence' from tremor). I credit a regimen of diet, exercise, and certain natural herbs and supplements with either halting or slowing the various features of PD's progression.
For issues of sleep, depression, and anxiety (interrelated): About a half-hour before bed I take a 10mg tab of controlled/time released melatonin (a natural occurring 'sleep/wake hormone' which we grow increasingly deficient in as we age), and a 100mg cap of 5-htp (2xp/day morning and night) to smooth anxiety, improve mood, and facilitate sound sleep.
I also found a 200mg cap of l-theonine (a natural amino acid) shortly before bed helps as well but you may want to start this a couple days after starting the melatonin and 5-HTP to see how much it impacts your sleep (or fails to).
Finally, if you're not already using a good curcumin supplement (preferably the improved bio-availability 'longvida' version), I'd highly recommend it as well for its well-established neuroprotective, anti-inflammatory, and anti-oxidant properties (I'm convinced my balance issues vanished soon after adding 500mg of this 2-3 times p/day to my supp-regimen).
Unlike the Big Pharma meds that ensure a bevy of undesirable side-effects, these are all natural supps that seem to work wonders without side effects of any kind.
These supplements are available from numerous sources and manufacturers and I suggest you just check out Amazon (if you're in the US) or similar if you're in UK or elsewhere for the best priced options. The following links are simply to provide a description of the supp/properties:
Thank you so much for sharing this information. I have never used more than a one a day vitamin capsule as a natural supplement but my orders are rushing here on the truck as I type!
Is sinemet the only PD medication that has been tried? I am on Rasegeline and neuropatches and there are all sorts of other drugs to put into the mix. I am in the UK but I do know that the latter two are expensive. By the way, I find that I cannot take two tablets of sinemet at once without provoking dyskinesia. In my case as I only take four a day I can fit an extra one in by reducing the time between but as you are taking them every three hours this may not be an option . How many in total are you taking. My neuro aims to keep sinemet to 5 mg a day max. Hence the neuropatches (24 hr release). The other question is, has the neuro said exactly in what way you are atypical? How was the lewey Body dx. made? So many question seem to need answering. Its horrible to be left in limbo but unfortunately you are not alone. A recent survey by PD UK of recently dx PWP's found that 60% of patients left the consultation with absolutely o information whatsoever about the doncidition.
I had to abandon my previous post as it kept trying to delete itself every time I tried to change the last word to condition not to mention turning the screen upside down when I used the arrow keys!!
Hello Paddyfields...TY for your info. My diagnosis of Lewy Body was made like all the other in the dark...guessing. We do not have DatScanning here in Canada?? My neurologist tells me she has never used one for diagnosing Parkinson's ..so great here I sit in Limbo not really knowing anything that I didn't before. My dose of Sinemet is 100/25. 2 tabs q 3 hours..she has told meI can play around with the dose. I can try other meds if I like???? She's the neurologist not mr. I've been a nurse for over 30 years and I find this really appalling
.she has dismissed the diagnosis of Lewy Body based on a follow up cognitive test that I had in Jan 2015 baseline test 1 1/2 yrs ago. Which showed no decline. Tried to tell her the first test I was coming off my med and the second test my med had been increased. Not to mention what about the rest of the days? Is this terrible diagnosis based on one test result in one moment in time????
I will get a second opinion from BestDoctors but I feel this will be the norm in how physicians treat this disease..sadly it's an example of how the medical system works today.
Gurdeep11
It's very difficult and we do not understand, we can not really. You see we cannot imagine your situation, So we offer our love , thats all we can do. Maybe you could tell us about your life, the happy parts.
There is a section of Healthunlocked specifically for Atypical PD, That does not mean you are not more than welcome here but there will be more people who better understand there, you belong in both sections.
maybe you can find that strength again. If talking about it helps ,we are all ears.
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Thankful for you... 
When all you have is luck... but then you loose hope for luck
Nothing is working
Where have I been for the last few years ..
I Have Been Tempted to Write About How Great My Protocols Are For Awhile :(
