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Correct diagnosis and meds?

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Parkinson's Disease
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Posted 10/7/2009 2:24 AM (GMT 0)

I am 48 and was diagnosed with PD a year ago by a neurologist. I got a 2nd opinion from a renowned PD expert who also says I have PD. My main symptom was compulsive toe curling in my right foot during excercise like jogging and my right arm not swinging as much as my left when I walk. I also feel a nervous shakiness sometimes, especially when stressed, but nothing that seems to fit the description of "tremor" in everything I have read.

I first tried Mirapex and it made me sick so I was switched to LDopa which I am now taking 3xs a day, along with Azilect. It does seem to help my toe curling and walking more normally. I am really worried that I will get the uncontrolled movement problems I see with Michael J. Fox.

I have many questions, but, since I am new, I will start with the 2 burning ones:

(1)  I am wondering if I really have PD. Is nervous feeling shakiness the same as tremor? Also, I have read the toe curling is a form of dystonia and wonder if that is not the same as PD? I know this is not the place to get a medical diagnosis but I have read a lot of PD materials and, while I know the disease varies, my symptoms do not seem very ordinary and would be interested in whether others have had similar symptoms.

(2) Should I really be taking LDopa? My symptoms were annoying and really messed up my regular excercise routine but not that severe and I worry that the cure may be worse than the disease.

I am still pretty young, in the midst of a great career, have kids to get through college and really struggling with this. II would really welcome any thoughts. Thanks.

Posted 10/9/2009 1:05 AM (GMT 0)
Geetar, while I don't have any answers (I haven't seen a doc and at this point haven't been diagnosed with PD), I'm anxious to see how others on this forum respond to your questions. I've been exhibiting occasional but painful foot cramp/toe curls, "twitches" and anxiety (like you not the exact definition of tremor but both worse with stress), so my educated guess is I have PD, but who knows. Thanks for your post. Its good to know there are others who are unsure of what their symptoms really mean, even if after a diagnosis.

By the way, I've been taking Miraplex for RLS (restless leg), for about 2 years. It made me a bit sick at first but after a week or two that subsided and now it does a great job helping me relax enough to sleep.

I'm curious, what symptoms did your neurologist see which helped him diagnose PD? Was it just the toe curls and shakiness?
Posted 10/9/2009 1:28 AM (GMT 0)
Einer, Thanks for your reply.

The toe  curling, shakiness and right arm not swinging are what made me see a doctor but he did a lot of tests including electric current tests (sounds worse than it was) to rule out nerve problems, as well as a lot of what I would call movement tests like tapping my heel repeatedly, flipping my hand over and back repeatedly, him bending my arm back and forth and others. He says there is a slight resistance that is evidence of PD (honestly I don't detect it). Also, when I walk, my right arm holds against my body (my wife noticed this and pointed it out to me) which didn't bother me but looked unusual and he says that is a PD symptom. He also says my face has lost some expression although it was been several years since I have had "droopy eyes" (as my eye doctor called it several years ago when I asked). I also have bad handwriting and a pretty soft voice but I have always had those, even when I was a kid. BTW, he did not think my shakiness was PD because mine is "fine" as opposed to the more pronounced PD tremor.

I tried Mirpex for a couple of months hoping I would adapt but never got over the nausea and sleepiness. I also tried the other similar medicine (I do not remember the name).  

Anyway, I may be in denial but I have read so much and, while some of my symptoms are PD like, I don't seem to fit what I see most descriptions of the disease.

Posted 10/9/2009 8:12 AM (GMT 0)

Geetar,

WOW! What a myriad of issues you have described. I can only 'speak' from my experience ... and this certainly isn't true for everyone. First and foremost, talk with your doc/neuro/MDS (my disclaimer). about me ... I was dx in 2001 and have had a very slow progression with low meds. I have been VERY fortunate!

 

The toe curling you describe is most likely dystonia, as you mention. It is a separate (?) but common symptom of people with Parkinson's (pwp). It can cause muscles to constrict in uncomfortable ways - an OVERsymplicification.

 

The Michael J Fox 'wiggliness' is dyskenesia, often a side effect of Sinemet/Stalevo/levadopa.

 

Lack of arm swing - particularly on the affected side - is a common symptom of PD and one that docs look for. Lack of facial expression is also a symptom that docs look for. Many with PD have a soft voice and also small hand writing or micrographia.

 

As you undoubtedly know, there is no definitive test for PD. It becomes a clinical (physical) observation and if you meet X of the Y symptoms, the diagnosis is PD. Everyone's symptoms and response to meds are different.

 

As to meds ... Mirapex, which you tried, and Requip are dopamine agonists. One or the other is commonly prescribed for newly diagnosed and young folks such as yourself. Sleepiness and nausea are common side effects. I felt nausea for about the first 6 weeks (lost 10 lbs when weighed mid 120's to start) and still get the 'yawns'. (I respect and heed the tired feeling ... especially when driving.) Since then I have done fine with Requip - again, respecting and sometimes compensating (with meds such as Provigil) for the tired feeling if driving, in a classroom environment where need to be alert at all times, etc.

 

Again, Michael J Fox's 'wiggliness' is a common side effect of Sinemet or Stalevo (which is basically Sinemet and Comtan). Sinemet is the gold standard - works the best. However, the 'cost' is the dyskenesia or 'wiggliness'. Some folks never have dyskenesia or have it to a lesser degree - ya never know. The benefits often last 5 years and then reduce over time. The side effects tend to increase over time. The 'on time' becomes less and the 'off time' tends to increase.

 

It's all a balancing act - meds vs. side effects - and is totally an individual decision.  The most important point is that you educate yourself on your symptoms and treatment and choose the treatment alternative that is best for you and your situation. I commend you for playing such an active role in your treatment alternatives! You are your best advocate! 

Posted 10/10/2009 3:11 PM (GMT 0)
Thanks for sharing Lizzie. That is very helpful. I am going to talk to the dr. next time about getting off LDopa and trying Requip or Mirapex again. I did try each of those for a time and they both made me tired and nauseous but I am wondering if I should have waited longer to try to adapt. I also wonder if I stay on LDopa and start getting the dyskenesia can I go off and try the agonist. BTW I am also on Azilect which my dr. says does not usually help with symptoms but slows progress of the disease.

Anyway I will take your advice and talk to the dr. but I am interested in others' experiences as well.

It is encouraging to know you have had slow progression with low meds and you were also in your 40s when dx.
Posted 10/10/2009 10:59 PM (GMT 0)
Geetar,are you taking just levodopa or levodopa/carbidopa(sinemet)?Does the levodopa help relieve your symptoms?Ed
Posted 10/11/2009 3:47 PM (GMT 0)
Yes it is Carbodopa/Levodopa. It is generic but I understand it is the same as Sinement. Yes it definitely helps my walking so the right arm swings like it should and it also seems to help control the toe curling.
Posted 10/11/2009 10:14 PM (GMT 0)
Geetar,Glad to hear that the meds help you.I would be in bad shape without mine.I've essentially been on the same dosage of mirapex and stalevo since they have been on the market.They still do the job.Wish you the best.Ed
Posted 10/12/2009 2:25 AM (GMT 0)

Ed,

What side effects, if any, have you had from Sinemet or levodopa/carbidopa? Generally, Sinemet has worked well for you, hasn't it? Any words of advice regarding it's use, length of efficacy, and side effects you have experienced?

 

One still needs to realize that everyone responds differently to PD meds.

 

Thanks for sharing!

lizzy4451

Posted 10/12/2009 11:10 AM (GMT 0)
Lizzy,I have not noticed any side effects that I can contribute directly to my use of sinemet.I do experience minor bouts of freezing ,which I believe is pd related.I found that sinemet would last anywhere from 2-3 hrs for me,and by switching to stalevo i get 3-4 hrs from a dose.I believe many factors affect the duration of my meds.In order of importance to me:1.amt of sleep2.low protein diet 3.no food for 1/2 hr before and after meds4.a low stress day.You are absolutely correct everyone responds differently to pd meds.If I could function well without them I wouldn't take them.Wish you well I'm going north for a few days fishing.Thank you for your contributions to this forum.Ed
Posted 10/12/2009 12:18 PM (GMT 0)
Happy fishing, Ed ... and thanks for your kind comment. Do you realize you are about to submit your one thousandth post to this forum?!? We're all going to get our noise-makers out in anticipation ... be listening!

 

lizzy4451

Posted 11/8/2009 6:48 PM (GMT 0)
My husband was diagnosed 3 years ago. Started on mirapex. After a year he switched to sinemet. This summer he weaned himself off the sinemet. It has been about 3 months. No meds and no anti-depressants. Has no symptoms at all. Could he have been misdiagnosed? Has this happened to anyone?
Posted 11/9/2009 2:13 AM (GMT 0)

Jefa,

I am not familiar with a situation like this. I would strongly encourage you to work with the doc/neuro and make sure he/she is aware of the medication changes you have made and the results. Most people with Parkinson's react favorably to Sinemet/levadopa.

 

lizzy4451

Posted 11/9/2009 3:21 AM (GMT 0)
Thanks Lizzy. He seemed to be bothered more by the side effects of sinemet than the Parkinson's. that's why he decided to start cutting back. He just didn't feel like he had Parkinson's.
Posted 11/9/2009 6:52 AM (GMT 0)
Hi everyone, I'm fairly new to this forum ( I've posted once and didn't get many responses). I'm 46 yrs old and was diagnosed 1 year ago, but I have had a variety of symptoms in varying degrees for over 10 years . Because i didn't really fit into any one catagory I never really recieved much help or answers to my questions. Because of this, and because my symptoms were increasing i was actually happy to be diagnosed because that gave me a treatment plan and some answers.They both have been alot tougher to deal with then i ever imagined. Sometimes it's hard to tell which is worse , the sypmtom or the side effect but all I can tell you from experience is that when I've reduced my meds ( with docs approval I was sure then that they were indeed working and I was better off with them)

   I also have the internal tremors alot and they can be just as disturbing as my hand tremor. My suggestion is to talk freely with your doc about your questions about the diagnoses,but continue to take the meds if they are working. Relief is really what we're after even more than a diagnoses isn't it?

   Good luck and it sounds to me like you're doing a very good job at being your own advocate.

Posted 11/10/2009 3:02 AM (GMT 0)
Jazzy G, I hear what you mean about everyone having different experiences. Feels like it is hard to find another person with muchh in common. What are internal tremors? I have not heard of that.

Jefa, Interesting story. Glad to hear your husband is better and off meds. I am pretty converned about taking Sinemet at such a young age. If you don't mind me asking, what your husband's symptom's before when he got on the Mirapex?
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