Parkinson's Disease Tulip


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Old 08-02-2013, 10:26 PM #11
mouka mouka is offline
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Quote:
Originally Posted by soccertese View Post
1. what drugs are you taking, especially the ones you take to get to sleep?
2. what supplements do you take?
3. what other medical conditions do you have?
4. what does your GP think?
5. can you still work?
6. what country are you in?
I will answer your questions:
1. I started taking stillnox. It's a sleeping pill. But I am trying to get off this pill. I only took it twice or three times when I could not sleep
2. I take Magnesium and B6-B12 vitamins
3. I don't have any other medical condition.
4. My GP and a neurologist don't think I have PD because I don't have any permanent tremors.
5. I am working and my work has not been affected by my anxiety except for lack of sleep because I am so anxious I can't relax enough to sleep.
6. I live in Naperville, USA. It's a suburb of Chicago.

I just wanted everybody to know that I have already seen a neurologist, and he categorically ruled out PD. But I am still not convinced. He did some test like EEG. He held my hands to see if I had the tremors I was talking about. He asked me to hold my hands in the air parallel to ground to see if the tremors might develop and how much control I have over my muscles. He moved all my limbs repeatedly to detect muscle rigidity. I guess he didn't detect anything. He then asked me to walk around his large office, which I did while he was observing me.
After these test were done, he ruled out PD and prescribed some anxiety and depression pills. That's where I stand now.
My worried are the following:
I have a lot of tension in my biceps and most of my muscles. It's as if I am working out a lot whereas I only started working out some weeks ago. I used to be active, but I stopped exercising some time ago.
I have fine motor control on both my arms. But the tension I have in my biceps when I am writing or doing anything with my hands worries me. It sound a lot like PD to me.
I can still smell stuff, but my sense of smell has decreased a long time ago.
I am stressing out so much I am having a hard time to relax and sleep at night. That is my major issue for now. If I could wind down, relax and sleep. I wouldn't worry about anything. At least for now.
My theory is this: I am in a very early PD stage or I have something that mimics PD. I could be wrong of course.
I am going to try to see another neurologist. The neurologists I am seeing do not specialize in movement disorders. So I don't know if they are missing some crucial piece of information I am giving them. Like the tension in the muscles and the aches in my back muscles. I don't really know.
I am praying it's not PD. But deep down inside I am afraid that's what I have.
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Old 08-02-2013, 10:59 PM #12
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Multiple medical opinions are always a good idea, if you think they might be missing something..
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Old 08-03-2013, 03:09 AM #13
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I was wondering if some of you had PD long before it was diagnosed and with hindsight might have missed early warning signs?
In my case early warning signs would be:
Decreased of sense of smell
Tremors that come for a day or two then disappear for a long time.
Excessive sweating.
Frequent urinary trips.
Tension in some muscles.
Difficulties with sleeping.
Anxiety.
Nocturnal panic attacks

I don't know if the collection of all these symptoms might necessarily lead to PD diagnosis. What arre some sure signs one has PD?
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Old 08-03-2013, 05:15 AM #14
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I have noticed something interesting lately. I woke up suddenly less than an hour after I went to sleep. My left hand was numb. I immediately thought about a stroke. But it happened again a couple of times. It's as if I have lost all feelings inside my arm and felt like cold skin.
Is this something someone has experienced with PD or is it indicative of something completely different?
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Old 08-03-2013, 06:50 AM #15
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I am going to try to see another neurologist. The neurologists I am seeing do not specialize in movement disorders. So I don't know if they are missing some crucial piece of information know.
I am praying it's not PD. But deep down inside I am afraid that's what I have.
Mouka, you live near one of the major cities in the US. If you want to see a MDS there are numerous good choices. Several possibilities include:
1. The Parkinson's Disease and Movement Disorders Center at Rush University Medical Center
2. The University of Chicago Center for Parkinson’s Disease and Movement Disorders
3. The Northwestern University's Parkinson's Disease and Movement Disorders Center

No one on the forum can give you any medical advice or advise you other than by what has already been said. Keep in mind that if you see enough doctors, at least one is likely to diagnosis you with PD. Its one of the most highly misdiagnosed illnesses that we have. So, you can search for what you want to hear or try to find the real answers. Go to a top MDS center and listen to what they say.

What I will tell you though, is take a deep breath, calm down, and focus. Whether or not you have PD is still to be determined, but stress will hurt you either way. Mental attitude is crucial is helping you overcome the symptoms of most illnesses, PD included. Life is full of challenges, cancer and other illnesses, loss of job, death of a loved one, etc. Parkinson's is just another challenge. I choose to accept it, focus on what I can do to control it, and then move on and live my life as best and as normal as I can.

Good luck,

Gary
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Old 08-03-2013, 08:36 AM #16
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it cost me $300 out of pocket back in 2002 for a 2nd opinion from a world renowned MDS, she said she could tell i had pd the instant she saw me by my face, but i get the feeling you wouldn't even believe the opinion of a MDS. i got my 2nd opinion a few days after my first, i had to know, i didn't start posting on message boards asking for a 2nd, 3rd, 4th opinion. if you've ** got a wife and 3 kids and are still working, then you owe it to them to immediately find professional help or take the advice you've been given. i would expect that maturity from an active college professor. what you are doing here is understandable if you are in a panic but completely irrational imho.

you've been given some pretty good advice here, take it. it's kind of absurd to try to get get a positive pd diagnosis on a pd social networking board, i wouldn't try to do it for my best friend, much less a complete stranger whom i've never met, all i'd do is say 'why not see a doctor' cuz if i'm wrong in my educated guess there could be just a little emotional trauma as you might guess.

Last edited by Chemar; 08-03-2013 at 09:59 AM. Reason: ** edited as per NT guidelines
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Old 08-03-2013, 01:30 PM #17
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I am currently vacationing overseas. In Morocco to be precise. So I can't see a MDS yet.
I was just hoping that someone might read something into my symptoms.
I have no clue why I zeroed in on PD. I guess I have read somewhere that tremors are the typical symptom of PD, and I immediately assumed it was PD.
I am praying go almighty that it is not. I haven't had any real sleep in days. Some strong sleeping pills got me a few hours of rest in the last few days, but that's all.
I can't unwind and go to sleep. Something is preventing me from doing so. I talk with a softer voice now and have to clear my voice to speak louder. I also have noticed that my balance was affected. I feel as if I was going to tip over. I don't know if it's because of the lack of sleep or because of all the medication in me or simply another symptom of PD.
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Old 08-03-2013, 01:47 PM #18
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I am currently vacationing overseas. In Morocco to be precise. So I can't see a MDS yet.
.
I suggest the best thing you can do today is get off of the computer and go shop in the bazaars of Marrakech, or visit the Merenid tombs in Fez.
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Old 08-03-2013, 08:57 PM #19
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I suggest the best thing you can do today is get off of the computer and go shop in the bazaars of Marrakech, or visit the Merenid tombs in Fez.
I stopped doing all that. I am eager to go back to the US now and get an appointment with a MDS as soon as I can.
Having said all that, I know they will just confirm what I already am suspecting. But hey, that's life. I was dealt a bad hand. I will have to play it through. I have extremely negative thoughts. The kinds a father and husband should never have. But the thoughts are constantly running in my mind. I can't shut them down. I am the sole bread winner in my household, and if PD can't let me play this crucial role for me. Then there is no point in continuing to live.
I know I am in the early phases of stage 1 PD. I also know, from tons of readings, that it will last over a year, then phase 2 kicks in. This is usually the longest phase. I don't know if I could still work and be the bread winner in our household still in this phase. But if I can't, I will have to make a quick exit. I don't want my kids to see me crippled and hopeless. Maybe I will change my opinions over time. But for now, that's how I feel. I know that humans adapt to all kinds of conditions. But I don't see myself adjusting to this cruel disease.
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Old 08-03-2013, 10:54 PM #20
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If you have done as much reading as you indicated, you know that many things can cause many of the symptoms you have. For example:

sense of smell can be caused by a zinc deficiency (be careful how you supplement, if you do, because minerals can build up in the body and some versions of a mineral are more readily absorbed by the body than others, such as magnesium....and some minerals need to be taken in a certain balance with others)

muscle cramps and fatigue can be caused by magnesium deficiency....recent estimates are that most Americans are deficient in this mineral. Again, careful how you supplement, if you do....I would take a look at the peripheral neuropathy forum here: MrsD has excellent posts on magnesium as well as the B vitamins. Epsom salt baths are one of the easiest and most relaxing ways to supplement with magnesium if you want to do so.

PD tremors are when the muscle is resting. But there are a LOT of causes of tremors, and there are actually three or four different types of tremors. I know a lot of people who do not have PD, who have had those "internal" shaky feelings and they are stress-related and resolve when you can get yourself grounded again, if that makes sense.

No wonder you can't sleep with the level of stress you sound like you are dealing with. Whether or not you have PD, it would help if you could get a handle on your anxiety: medidate, do yoga, walk, sing, whatever helps you reset. Deep breathing is also good: I read that it is impossible for your autonomic nervous system to be racing in overdrive if you take long deep breaths, so this is a good way for you to force your body to s....l....o.....w d....o....w....n. Again, this helps everyone whether they have PD or not. Exercise is also great, again, for those with or without PD.

Make sure you get enough sunlight: not only for the vitamin D3 we all need, but because the sunlight hits the retina of the eye and helps with melatonin, which we all need plenty of to be able to sleep. You can google melatonin production together with sunlight to learn more.

I would be at the office a reputable MDS specialist, if you really want to know whether or not you have PD. If you are so anxious about this that you are neither sleeping nor eating, your body is in a difficult place: no food, no rest (sleep deprivation was a form of torture during wartime, fyi, for a reason!), extreme anxiety creating high levels of stress hormones in your body, what do you expect your body to do? Even a person without PD would have health issues under these circumstances.

And don't jump to conclusions: even if you have PD, you can have a very full life if you have the mindset to do so. You make it sound like having PD means life is over: it is not. On this forum alone we have members who have had PD for decades and are still gardening, traveling, enjoying their lives and their families and grandchildren. Any of us could get hit by a truck tomorrow and be gone. We all have the gift of today.

Being practical: I'll repeat some advice that's been posted previously on this forum: make sure you have all the insurance/coverage you might want or think you need (health insurance, life insurance, disability, etc.), BEFORE you get a diagnosis. IF IF IF you have some medical condition, PD or otherwise, it will be much harder and more expensive to get coverage after a diagnosis.

Best of luck to you
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