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TNdad

Diagnosed today

153 posts in this topic

miracleseeker what you said about it being for the best if you are less active and post less is just all wrong ! 

 

I for one would hate to not see you on here. You have always been so supportive and I couldn't have gotten through my whole father's dx without you !

 

Keep on keeping on my friend !

 

Hugs,

Rebecca

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I was diagnostic December 31, 2013. The neurologist put me on .25 Ropinirole three times a day. I had had an MRI and a balance test. We then went to another neurologist for a second opinion. He ran a test to see how much Dopamine was being made by my brain. He then concluded I did have Parkinson. I am 70 years old and so blessed I did not get this in my 30's, 40's, 50's, or 60's. I am now taking 2 MG Ropinirole three times a day. The right hand and arm is still shaking. I have been put on Sertraline 50 MG one time a day in addition to my other meds. Does anyone out there think my Parkinson's will advance quicker because of my age? Right now I do not have any nausea. Only slight headache.. I am a female and the shaking seems to be worse.

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Hi Nauvoo,

I am sorry for your recent dx, but I agree you are blessed to have gotten it later then sooner. My father just got dx with PD about 5-6 months ago ~ he is 84, the meds seem to have him pretty stable.

 

I hope you re -post this question as a new thread as I am sure many would like to comment on your question.

 

You could also ask Dr. Okun in the the "ask the doctor" section on this board. It is a great question and I am sure many would like to hear  about others experiences and knowledge on this.

 

Hugs,

Rebecca

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I'm in the process of increasing the neupro dosage. I wanted to have the domperidone on hand first in case the nausea and indigestion came back for a visit. I know neupro is supposed to help with the tremor, but does it do anything for the dystonias? They seem to be increasing and showing up in new places. Sometimes I'm thinking wow, that's weird, but usually i'm hopping around or trying to massage the danged thing away.

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Roger Start - What characterizes a 'useless neurologist'?  Specificity please so that we'll  know one when we see him or her...

 

One that delivers the PD diagnosis, hands you a prescription, tells you to look into voice-activated computer programs because you won't be able to type much longer, and  indicates you'll need to quit work within five years. 

 

That's how my husband started his PD journey. I hadn't gone to the appointment as I was deep in denial and was sure it was essential tremor. My husband never filled that prescription and we found a Movement Disorder Specialist who will be with us for years to come even though we have to drive a bit of a distance to see her. She gives us hope, possibilities, and options for treatment while the "useless neurologist" took all of those away. We never once considered returning to his office for care. I did go back once to pick up copies of my husband's medical records, his staff made that fairly difficult as well. 

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Dave,

Thanks for the info back on Feb 2.  Going back to a 1mg Neupro patch for a couple of weeks really helped with the transition to the 2mg patch.  I had domperidone on standby for nausea but didn't have to use it!!  :-P

Did you have any more issues going to higher doses?  Did the patch help with dysonias?  By the way, I just saw your other post from yesterday, and I have stiffness developing on both sides, not just the tremor side.

 

Thanks,

 

Stephen

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Hi TNDad - Welcome to the forum!

 

I have a little different take than most of the other posters. I was diagnosed last September and simply decided that I wasn't taking any medication yet. The neurologist I see said that taking medication doesn't alter the course of the disease. Therefore, that means that the medication only treats the symptoms - not the disease itself. Therefore, the question becomes whether the symptoms are so bad as to justify the damage done by the medication. Is it worth being nauseous or sick to stop the tremor? Is it worth developing some compulsive mental disorder to improve my balance when I'm getting dressed? Are the symptoms worse than the side effects, not to mention the very real possibility of a bad drug interaction?

 

Doctors in our society like to prescribe drugs for EVERYTHING! That's the way they are taught in our Medical Schools and by big pharma. Just because they're pushing drugs doesn't mean that you have to take them.

The side effects of Requip/Klonipin/Exelon/Sinemet are worth putting up with if it means I can get up, go to work, eat, relax without pain, and have some resmblence of sleep at night.

 

I am fully aware of the fact that without Sinemet, getting out of bed and dressed unassisted would be impossible. (I've tried it).

 

I am thankful to those pill pushing doctors and Big Pharma for developing and perscribing medication that allow me to continue to function in society in the face of a crippling illness. I'd rather die from the side effects of some PD drug or surgery than wind up completely paralyzed with a feeding tube rammed down my throat in a nursing home somewhere for the next 20 years.

Edited by afroney

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I'm getting in to see a movement disorder specialist at Vanderbilt this coming week. I went to another local neurologist who is a neuromuscular disease specialist last week for a second opinion. He told me that my tremor was too fast for PD and that I had multiple lesions in my midbrain MRI images. He said I'd need a spinal tap and lots more lab studies to evaluate for small vessel disease, infection or MS. As you can imagine he scared the bejeebers out of me and my wife. I went immediately back to my hospital and asked a neuro radiologist to look at the MRI "lesions". He laughed and said they were normal perivascular spaces, a colleague of his agreed. It also turns out that my tremor is about 6hz and within expected range for yopd. Having experienced this I feel for patients who accept any doctors diagnosis without question.

PD can be a tricky diagnosis. Hopefully the mds at vandy can finally settle the diagnoses and I can move forward.

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I have an app on my iPhone that measures tremor, both resting and active. It varies widely between being on and being off. That 2nd neurologist obviously orders as many tests as he can because it makes him more money. Glad you're going to see an MDS.

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Dianne,

 

That's an awful cynical point of view.  Doctors don't make anything off of ordering tests unless they are the ones performing them and doing the lab work.  It sounds more like they're throwing everything at a problem including the kitchen sink in hopes that something sticks.

 

That 2nd neurologist obviously orders as many tests as he can because it makes him more money.

 

Just my 2 cents.

 

Dave

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Dave, I appreciate your point of view. It may be that the second neuro simply didn't know what to do, so wanted to do every test possible in the hopes that he could come up with a diagnosis and treatment plan.

 

I have on several occasions been asked to sign a document at my orthopedic surgeon's office acknowledging that the physician had a financial interest in the hospital where he sent me for xrays, scans, and even four surgeries. I ended up after a knee replacement in a "rehab" which was really a nursing home with very poor care which several of the doctors at that hospital also had a financial interest in. I had specifically asked to go to another facility but was told that they refused to take me and that this nursing home was my only option. I discovered that they had never even called the facility I asked to go to and where I got myself transferred to as soon as Monday rolled around and the social worker came in. We are asked to sign numerous papers at every facility we go to. When you're hoping for relief, are you going to find a different doctor who has no financial interest in any lab, hospital or outpatient testing facility? How would you even begin to know? What percent of people read every word of every paper they sign at a hospital or doctor's office?

 

What may have sounded cynical came from real life experience. But your guess is as good as mine, and may even be more on target. What he told TNDad was refuted by other doctors, so at least it was obvious he was merely guessing at best.

 

I love that we can speak honestly with each other here. :)

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My impression of the extra ordered tests is that they would definitely have been justified if his interpretation of the MRI was correct. It wasn't however. Also as a physician myself, I see lots of tests ordered just to cover one's buttocks from a lawsuit. The new health care laws did nothing to ease the practice of defensive medicine practices.

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Dianne,

 

I've never run into cross business relationships your talking about.  I've always gone where ever I want for my tests, usually a lab covered but my insurance.  Sorry you encountered that kind of treatment.

 

Dave

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I was just curious, what was the dosage and effects when you all took your first dose of sinemet? Was it an aha!! response or ho hum?? I had a ahaaa!! moment today.

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Over the course of three weeks I titrated up from just one  pill  to three 25/100's per 24 hour period.  Frankly, I felt little or nothing at all during that confirmatory testing though my symptoms then appeared only in late afternoon.  17 years later, pre DBS, I always felt a pleasant w-o-o-o-s-h as the pills kicked in and my body became unstuck.

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Sorry to hear that. Since you are a doctor you might find of interest the research and life experince of Dr. Wahls, she was able to reverse the progression of MS in her own body, by making sure the mitochondrion in the brain got the nutrients it needed to function well. She had MS for 4 years and she went from being reduced to a reclining wheel chair to riding her bike in only six months. Currently she is applying her findings to research on various other common deseases of the brain. Definitely worth looking into what she has to say, here is a short video and from there you can find your way to contact her:

http://articles.mercola.com/sites/articles/archive/2011/12/23/overcoming-multiple-sclerosis-through-diet.aspx

Best regards.

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Still waiting for lots of lab tests on blood and csf. The differential diagnosis has expanded a bit to rule out some rare stuff. In the meantime I'm on a low and slow trial of sinemet. Results have varied. I'm experiencing lots of fatigue and weakness particularly in the afternoon. I'm wondering if this is an "off phase" phenomenon.

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The folks at vanderbilt are treating me very well.  There is a world of difference between the MDS and the local neurologist who initially diagnosed me.  The MDS thought my presenatation was aytpical and did a spinal tap and extra blood tests.  It turns out that I have very high, greater than 1000, anti-tpo antibodies in my csf and may have hashimoto's encephalopathy on top of PD.  The encephalopathy is treated with high dose steroids.  I'm getting a DAT scan next week to see if I show definitive changes of PD.   If it's normal, my symptoms may be from just the encephalopathy.  i can't do the steroids until the DAT scan because of possible testing intererence.  So I'm now on wait and watch mode.  My Vandy MDS had to schedule my DAT here locally because the first neurologist and his staff are too busy. 

I can say that the three a day sinemet is helping my symptoms tremendously.  I'll remember forever how it felt when the tremors melted away for about 2 hours after the very first dose.  Of course this makes me think that I do have some flavor of PD, probably exacerbated by the autoimmune issue.  That's my update.

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We've been on the first family trip since the diagnoses. The whole Orlando thing. The trip was planned well before my diagnosis. I was worried that I'd slow my family down, but have been able to do most of our activities thanks to the sinemet. Things are different than before for sure. We take things a bit slower now, and I find myself scanning the crowds for fellow PWP's. Haven't recognized any, but I wouldn't be recognized either since the sinemet wipes out my tremor. My right arm doesn't swing, but unless you know what to look for, no one would have a clue. I initially wished I could change plans and stay home, but this week has shown me that not much has changed from before the diagnosis and I need to be like Dr. Strangelove now and stop worrying and learn to love the PD.

Edited by TNdad

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Hello everyone, i am new, and scared , and mad that I may have this!! I also have rheumatoid arthritis . I went to the dr today and he is sending me for a MRI and put me on sinemet 25/250 1/2 in he morning and 1/2 in the evening. Is this the normal?? I saw most people post that there on 25/100. I have not taken one yet since I watch my grand baby and didn't know how this would effect me. He said I have a lot of the symptoms but my tremors seem to be a little fast then what he is use to seeing. Is everyone tremors slow or do some have a faster tremor pace? He also said the sinemet should help if it is .

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Hi Beedo,

 

Welcome and thanks for introducing yourself. When I read that your doctor (neurologist or movement disorders specialist?) started with even 1/2 of a 25/250, I cringed. That's a lot of levodopa. Carbidopa is the first number, and is a med that prevents nausea, while the second number, levodopa, is the synthetic dopamine that replaces what we've lost due to death of the cells that produce natural dopamine. I had an MDS add carb/levo 50/200 ER every three hours along with a regular 25/100 every three hours, and I was manic for five solid weeks until she discovered that the prescription was double the milligrams of what she intended to order. And even that would have been too much along with regular carb/levo at the same time. Usually people are started on one or 1/2 of a carb/levo 25/100 two to three times/day. Don't be surprised if you get nausea from the levodopa because he/she basically gave half of the anti-nausea med and one to one and one half times the starting dose of levodopa. Take some crackers with it!

 

You might want to check with the doctor or the pharmacy or both before you take any. Medication errors are more common than most folks would like to think.

 

By the way, MRI's do not show if you have PD. They just show if there's something else that's the problem. Maybe he is thinking about your faster than normal tremor. I've never heard tremor referred to as fast or slow. Mine is more pronounced when I'm in an "off" state (too much time between doses), and is less noticeable when I take my Sinemet on time. I think for me it's larger movements vs. smaller movements, rather than faster or slower.

 

A common welcome here is, "Sorry you have to be here, but glad you found us!" I will leave you with that, and hope to see you again soon!

 

Dianne

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Thanks Dianne,

Thanks for all your input I can use as much as I can get right now,

I am going to apologize right now for all the questions that I will be asking. But when I was first diagnosed with rheumatoid arthritis I read everything I could get my hands on and all it did was overwhelming and freaked me out.it also made me think the worse about everything. This time I thought i would read a little and not overwhelm myself but try to get more info from people that r living it.. So thanks in advance for anything u can share

I took a half of one late last night I seemed fine and took one half this morning, well I started to get nauseous and it wasn't to bad next time I will have to make sure that I eat something with it. I'm not sure if it works the same for everyone or if it is different, but last night after I took the first dose. It took about 45 mins to an hour and all tremor stopped in my Arm and hand for about 75 mins then started coming back slowly. This morning dose started working about the same time except I got nauseous but it has been working for almost 2 hours now. So is this a drug that has to build up in your system and if so how long does it normally take to know how well it will work? Is this a drug that everyone is on ?

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My first neurologist ending up being an MDS who was head of the Scripps Clinic here in San Diego.  I got very lucky.  I can't tell you the number of folks I've met over the past 10 years that have had to go to multiple specialists over a number of years in order to get any semblance of a diagnosis.  My neurologist looked at my tremor in my right thumb (classic pill counting tremor), said it's probably Parkinson's and proceeded to rule out all the other possibilities over the next six months.  When I went for a second opinion, the neurologist actually told me if I was his patient, he'd be sending me to my doctor.  I recommend anyone who suspects Young-Onset Parkinson's see a MDS as soon as possible.

 

I had an MRI as well before my MDS diagnosed me.  She was looking for signs of a stroke or tumor.  They also had me do a 24 hour urine analysis (had to collect it for 24 hours and bring it in later that day) in order to look for signs of Wilson's Disease. 

 

Sinemet has been around for about 40 years or longer.  It is the go-to standard drug that most PD patients take.  However, many of us tried to avoid it as long as possible because of side effects and eventually you can develop dyskinesia as well.  I took Azilect for two years, then added Requip XL and then added Sinemet.  Many neurologists also use Sinemet to determine if a patient has PD (since it's getting rid of your tremors, that's a good indication) and then will switch you to something else until you really need the Sinemet.

Edited by young_dad
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