In 2003 I thought I had a severe case of arthritis through my whole body because I hurt and was very stiff. I was in construction and apparently I was hanging my right arm and dragging my right leg so much a person asked me if I had a stroke. One day I went down stairs and I couldn't move no matter how hard I tried. I went to the doctor and he found my thyroid low (It is well controlled now) and sent me to the neurologist because he thought I might have Parkinson's. They did several test including brain scan ruling out another disease the doctor said was like PD but patients only lived 7 yrs. I rarely have a tremor it is that I'm extremely stiff. So started a long period of adjusting medication to prevent me from freezing and falling. They also had fix my terrible constipation problem. Fast forward to present and I am taking 8 25/100 Carbidopa/Levodopa and 2 50/200 Carbidopa/Levodopa a day. The past two years I have lost the feeling of caring, I'm not depressed I just do not care. Now I got a new doctor and It seems like every other doctor I get thinks I'm doing too good to have PD so they cut back my meds, and I start freezing/falling all over again. My new doctor said he doesn't think I have PD because even on meds I should have symptoms. He suggested that I might have MSA but wouldn't I be dead by now? If I don't have PD what do I have and will taking Carbidopa/Levodopa for 16 harm me if I don't have PD? I'm confused and my wife is angry because she's the one who has to help me when I fall or freeze. Sorry for the ramble.
I've been treated for PD for 16 yrs and h... - Cure Parkinson's
I've been treated for PD for 16 yrs and have a new Neurologist who doesn't think I have PD because I didn't show "The Signs"
Stopping c/l quickly may be harmful
I agree, I was in the hospital for 2 days and the nurse gave me my PD meds at different times than I normally took them and it literally took two weeks to get my body back to normal.
When my husband was hospitalized for 5 days, he was allowed to keep his meds at his bedside to maintain the strict schedule he was on. Seems many hospitals will do this, especially if you insist upon it and speak to the director of nursing. The head pharmacist may also be helpful. And your neurologist should support this.
My main symptom is motor impairment and stiffness. When I was diagnosed my neurologist said "classic PD" and I have no reason to believe otherwise. Same for you - what you describe are PD symptoms. It is readily apparent from hanging out on this forum that Parkinson's is a heterogeneous condition. This doctor is apparently ignorant of that fact. If he or she cannot get with the program I suggest finding a different doctor.
Also, high-dose thiamine does help resolve constipation.
Park_Bear thank you,I agree too and they put me on Senna Extract constipation. I was just put on Metformin (sp) for type 2 diabetes; I definitely do not have constipation issues now, lol.
During testing I do have symptoms of MSA (I looked a videos on it) like tremors in my hand while doing the finger nose thing. Like you said there are so many different forms of PD; my worst fear is if they cut back my meds I never recover the movement again if that makes sense.
When I thought that I might have MSA I researched it very seriously and discovered the following: in men, nearly all have sexual disfunction as an early presenting symptom. If you never had this in 2003, it’s probably not MSA.
Thank you, it has just happened.
What is msa. Sorry to sound ignorant
It is the same as Parkinson's but the meds do not help and you only live 7 yrs.
Multiple System Atrophy. Often starts with center body or axial stiffness.
As to pulling you off any neuroleptic medicaton that you have been on for a long time cold turkey, the phrase to use is "potential liability due to negligent iatrogenic failure to provide indicated continuity of care," mumbling perhaps "do no harm" under your breath, and watch that doc suddenly take extreme serious attention from then on...or fire you as a patient (in which case you remind the person about HAVING to provide essential continuity of care) and get you committed to finding someone else, which could just be a very important step that you might otherwise "freeze" on.
If you have the fortune of having a DaT scan, if something shows up it is more or less definitive of a PD or PD-like (practical equivalent for the moment) disease, due to not producing enough of a non-PD equivalent of dopamine in a particular region of your brain...but you need access to a sufficiently equipped diagnostic center, plus there are some diseases that can mimic PD that you can have concurrently.
Either way you responded well to C/L and regardless of what disease may be present, had been on it long enough for it to re-form the relevant neurological receptors and require a slow withdrawal period to allow those receptors to re-form and relocate to their normal, or "non-C/L-habituated/dependent" state, which takes time...like an addiction might require (such as for instance the same thing that occurs with anti-anxiety meds, anti-depressants, or commonly usable/abusable drugs like THC bearing products, opiates, alcohol, stimulants, cocaine, even caffiene). For this reason, seriously long-term depressed or bi-polar individuals are often told that they may need to think of their treatment as permanent (not unlike needing food), and to have to try to mix things well enough to at least be able to manage the side effects. But the good thing is that those receptors WILL move and return/re-propagate to where they "belong" as much as they can.
Can you take with effect b1 if I don’t take any meds, I had the dbs surgery 2 years ago Thanks
In my experience B1 does not require other meds in order to be helpful.
It sounds like PD to me and you clearly have a good response to CL. My husbands symptoms are definitely helped with CL plus supplements and B1! He does have tremor however but not freezing or falling. Everyone’s symptoms are different so I would be inclined to do what you’re doing and find a medic to support you. You know your body best so in my opinion go with what helps you.
We re seeing a new Neurologist at the end of the month and await what they think about my husband!
For 5 years my husband also was never sure if he had Parkinson's because all the symptoms he had were not typical (no tremor, no rigidity, no mask) Along the way he did get Lyme disease which often mimics Parkinson's. Did you get tested for that? Also, you mentioned a brain scan - but was it specifically a DATSCAN which shows the dopamine in the brain. That was the answer for us. Good luck.
Hi Sugar...
There are a surplus of quacks and hacks out there that should have their license pulled, they give you all kinds of meds and advice but in the end its pretty much up to you to experiment and try different doses and times, its one big pig f--k. Either doctors are pushing for DBS (Must be a docs cut in there somewhere the way they push it so much), which recently mine tried to sell to me, three years after my original diagnoses OR as one of my three neurologists told me when I asked about increasing my c/l dose.. "Well sometimes, at a certain point Mark, you just have to do what you have to do"" ....that was the reply when I told him I added a 5th dose of c/l right before bedtime for sporadic severe foot cramps that plagued me, so I medded myself and fixed the problem, I should be getting the $300 for the visit!!
And my take on c/l reduction, DO NOT stop cold turkey, built my own schedule to reduce a year long dose i was taking from 1250mg a day of c/l down to 1000mg a day, took roughly 4-5 weeks reducing @ 25mg a week for 2 weeks then 50mg a week for 4 weeks. had some very uncomfortable days during the reduction, especially the "ants under the skin" sensation, the itch you cannot scratch was the most horrible of my side effects and still plagues me today
God Speed!
I’m thinking I need to do something along those lines. However I dystonia started in my foot 1.5 years ago recently switched to my calf muscle and is brutally painful. Now what m?
My husband’s neurologist told us that approximately 20% of PwP don’t experience external tremor. Might be that you’re in that group. Also, the first neurologist he saw misdiagnosed his condition. It wasn’t until we saw a movement specialist neurologist that my husband received the correct diagnosis. Maybe a different neurologist would be more helpful to you?
I have few calls in as of today thanks
I agree CC, my second neurologists was a movement specialist also had a therapists/MS in the room with us, i've been very impressed with "Uconn, until they told me few weeks ago to think about DBS,,,,, i told them. dont waste their breath 8)
GOD SPEED!
A movement specialist was a great help in getting my husband's medications straightened out. His first neurologist was a horrible little man who said he wasn't sure my husband really had Parkinson's,He hated his patients. In return, no one has a good word to say about him..
Hi,
This seems to be a problem in this field. I got my diagnosis 6 years ago with a DATScan which was positive. I too have had little motor progression and never shuffled. Somehow Neurologists need to see the shuffle to be sure. Well after long story, I took another DatScan and I still have PD. Most of my problems are internal and my legs are very heavy and stiff in the morning, but I never shuffled. Perhaps because I've had dogs for 20 years and always take long walks. I went through the same as you lowering my levadopa,
I had a Psychiatrist who swore I didn't have it because I looked great. I just changed Shrinks.
I have found that 35% of PD cases are never diagnosed properly due to this misconceptions.
indecently, while being on very low doses of levadopa, I found that smoking cannabis throughout the day helped significantly, It ls legal here. and can replace a lot of medication. (just saying)
I was put on Mirapex and had terrible side effects with overspending and out of sexual impulses. I was too embarrassed to tell the doctor till a friend addressed the issue and the doctor weaned me of the meds. The side effects ended over time.
A few years ago I accused my wife of cheating on me (which never really happened) so much we had to go to counseling and it hurt her so much. I wonder if it was a side effect from Mirapex or delusions from Parkinson's?
In my main post I talked about losing interest/excitement. I do not feel depressed I just don't feel excited or sad anymore. An example I had family members shocked I didn't show sadness at the loss of my mother then when my two brothers passed away from cancer within two weeks of each other.
Forgive me if my post sound piecemealed I know what I want to say but it doesn't always come out right. I also fear coming a-crossed as a hypercondriac.
I have been told I don't have PD but have stiffness in the center of the body head to feet, to even slowing down my walking as well as affecting me cognitively somewhat. Digestion and swallowing are affected as was proven by scope and testing. I went on levodopa, natural form and guess what for 4 hours I can move better and feel much less stiff, less constipation. I have a tremor in the center too. It was all ignored. They wanted me to fit their picture of PD. This has been progressive for the last 4 years with many symptoms of PD like loss of smell and many other non- motor symptoms....all ignored. I take my L-Dopa and ignore them. Two can play at that game and life goes on.
When I first got diagnosed my upper body felt like I was shaking all over but my wife said my shoulders were just moving a little. I had bad pain on right shoulder and neck.
I also have felt the upper body shaking. About 4 years ago it started one night and scared me, then I noticed slurred speech some times , then loss of smell. I've had the head tremor for many more years bobbing up and down but diminishes with levodopa which, taken regularly for a little more than a year, I find I can't do without. My arms and legs function well if it wasn't for the slowness. No rigidity. Lately I've notice a mild jaw tremor at rest. My neck is very painful too, probably the highest source of discomfort and started suddenly more or less +3 years ago. Story of progression here eh?
( Canadian)
I had stuttering when I would freeze or feel like I was having tremors which hardly ever show. My new PD dr told me me head shake was not Parkinson's, but my other doctors said it was.
Yes that's what I was told as well. They said it was essential tremor but from what I've read ET tremor is different. I think head shaking is more common in women with PD than men according to what I read. I'll try to find the link about differences in PD between men and women.
rideabike,
Some people find magnesium chloride oil or mag oil (MO) useful for the neck pain which can sometimes be related to jaw and head/neck tremor.
Art
Thanks Art I will try to find a place to get some.
rideabike,
Here is a link to an 8 ounce spray bottle of MO for under ten bucks on Amazon that looks like it has quite a few good reviews. This bottle will be ideal for you to test it inexpensively to see if you like it for your purposes or not.
amazon.com/Magnesium-Oil-Sp...
If you like it, I can explain how to very easily make your own at home and it will be even less expensive than this bottle. Btw, if you like MO for your purposes and want to make your own for less expense, save your spray bottle so you can reuse and refill it with your home mix!
Art
In addition.... I forgot this: I am taking amino acids for apathy and loss of pleasure feelings...5-HTP, GABA, taurine and at bed time, L theanine and melatonin. I use ashwaghanda also good for anxiety. There are lots of natural means to help with that. I am not depressed like you said but feel pretty flat in the caring zone and that is because we lose so many of our feel good neurotransmitters with PD and as well as the result of taking levodopa...like loss of serotonin and others. I've learned a lot from this Healthunlocked website.
All the best to you!
Cognitive Decline - any suggestions? 
Medication not working
Anyone trying LDN or interested in it?
Not sure what's next
Rytari
