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I have PD


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#1 saad

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Posted 15 August 2013 - 11:46 AM

I am a 50 year old male. I have not been officially diagnosed with PD. But I have noticed too many symptoms that are leading me to believe that I actually do have PD. I just need confirmation from a MDS.
Here are my symptoms. It's a long litany of symptoms I have noticed over the last few years:
I started having uncontrollable tremors for 2 or 3 days in the last 3 years. The tremors would come and go. The amount of time between these tremors is highly variable. But I had at least 3 or 4 episodes in the last 3 years. I also have muscle twitches with increasing frequency.
What made matters worse is the insomnia I started having in the last 3 weeks. In fact, it got so bad I am now on sleeping pills that buy me a few hours of sleep. I am incapable of sleeping without pills. I had a few days of drenching sweats for several days a couple of weeks ago. I had a nocturnal panic attack a little over a year now. It was so bad I thought I was dying. I rushed to the emergency room. They did all kinds of tests, nothing came up. 3 days later, I am back in the ER. This time I think someone diagnosed me properly with nocturnal panic attacks. They gave me Lorazepam and it did the trick. I was able to get some well deserved sleep and rest.
Lately, I have noticed that I was losing dexterity on my left arm. I woke up one night about 3 weeks ago with a numb hand. I immediately thought about a stroke. But it lasted only for a few minutes. That's what started the insomnia. I could not sleep after that night. I also started losing weight. I would not eat anything. My mom would insist. I would eat some stuff and get full. I was a big eater. I have lost 20 pounds in just a couple of weeks. To make matters worse, I think I have diabetes now as I am constantly thirsty and constantly going to the bathroom. I went to see my doctor 2 days ago, he ordered some blood tests and said that I should stop "ruminating". My generalized anxiety has been running wild for weeks now. I would imagine the worst and stress out over it.
I noticed that I have lost some of my balance. I have not fallen yet. But it is a matter of time before this can happen.
My voice got softer and I started tripping over words. I am afraid I might not be able to keep my job. And this is adding another layer on top of m,y already galloping anxiety. We have 12 years of mortgage left, and if I lose my job, we lose the house. My wife does not work because one of my kids has a severe handicap that requires 24/7 care.
I have noticed that many of my muscles are cramping. First it was my right leg that was cramping. I blamed it on the daily commute of 43 miles each way that is taking its toll. But then I noticed my biceps had to be contracted a lot for me to achieve fine motor control. So much so that my left biceps has a mild burning sensation on it now.
I was doing some dishes some days ago and felt a strong pain in my back. I think it was the muscles rigidity that was manifesting itself after I moved those back muscles.
My doctor does not think I have obvious clinical signs of PD. But he didn't rule out an early onset of PD.
So here I am. A complete wreck that not only is ruining my life, but also that of my wife and kids. I feel enormously guilty but I feel extremely anxious too. I unconsciously am pushing my tongue against my teeth. I can't help it. And I find myself tightening my jaws for no reason.
One last detail, my sense of smell has decreased tremendously. I can still barely smell the strong stuff, but not the subtle stuff. My sense of smell is slowly disappearing.
These symptoms for me make perfect sense. I have PD or some other disease that resembles PD.
Anybody recognizes some of these symptoms for those of you with a confirmed diagnosis?

#2 Beau's Mom

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Posted 15 August 2013 - 12:00 PM

Hello, Saad. I'm glad you found us. If you are diagnosed with PD, and even while you are waiting for your diagnosis, there is an enormous amount of experience, strength and hope to be found here. Utilize all the features, including Ask the Doctor and get the free information by mail. Depression and anxiety often precede tremors and visible motor symptoms by several years. They are considered non-motor symptoms of PD.

Browse around, ask questions, and don't expect the rumination to just disappear. It is easy in the beginning to obsess about all aspects of PD and try to predict a certain future from the information you gather. In actuality, PD is highly variable in each individual, and rates of progression vary tremendously. You are on the right track seeing a qualified MDS. There are meds that help with symptoms so that you can feel almost normal for quite some time.

We all regret that you need us, and we are here to support and encourage you in whatever you may face.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#3 she-ra

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Posted 15 August 2013 - 12:11 PM

I agree with Dianne. Find a movement disorder specialist or a neurologist really soon. If he/she thinks you do have PD, you can be started on meds (such as Sinemet) and maybe get some relief from some of these symptoms. Everyone is different, different pace, different progression, different ages, and so many different meds.

Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#4 Daven

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Posted 15 August 2013 - 12:17 PM

Saad, You need to take a step back and relax. It's possible you could have PD or it could be something else. You say you think you might be a diabetic. Has your doctor done any blood work? In particular, you want to know what your A1C is. I'm a diabetic, and I get the full body tremors every once in while. Basically, when my glucose levels get really low, I will tremor all over and get very nauseous. These tremors are much more scarier than my PD tremors. My advice is, make an appointment with an MDS. They'll have you do all kinds of testing to rule out everything else. PD is a clinical diagnosis and it usually takes some time for a doctor to diagnose it.

So relax, make the appointment and wait and see what happens.

Dave

#5 saad

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Posted 15 August 2013 - 03:33 PM

Saad, You need to take a step back and relax. It's possible you could have PD or it could be something else. You say you think you might be a diabetic. Has your doctor done any blood work? In particular, you want to know what your A1C is. I'm a diabetic, and I get the full body tremors every once in while. Basically, when my glucose levels get really low, I will tremor all over and get very nauseous. These tremors are much more scarier than my PD tremors. My advice is, make an appointment with an MDS. They'll have you do all kinds of testing to rule out everything else. PD is a clinical diagnosis and it usually takes some time for a doctor to diagnose it.

So relax, make the appointment and wait and see what happens.

Dave


I have been to the doctor Tuesday. He did some blood tests, and I am eagerly awaiting the final word.
As for relaxing, I honestly would love to but I simply can't relax enough to get some normal sleep. I will eventually get there in a few months. But my anxiety about losing my job because of PD is simply killing me.
It's a snowball effect. I worry about losing my job. This gets me anxious and stressed out. Which in turn prevents me from relaxing, and I worry even more. This vicious cycle is very hard to break.
Today, in weeks now, I have been able to relax enough to not have a panic attack. It's progress. But I have a lot more to do before I can go back to normal. The stress of losing my job is literally paralyzing me. What's worse is that it is inducing panic attacks and a general anxiety disorder I can't get away from.
I have 2 weeks vacation and I am back to work. I hope to overcome my fears by then.
Please if anybody has some trick or tip on how to deal with the anxiety associated with PD, I am dying to hear it.
Thanks to all.

Edited by saad, 15 August 2013 - 03:34 PM.


#6 christie

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Posted 15 August 2013 - 03:37 PM

Saad. anxiety alone may cause all these symptoms you are experiencing. Nobody of course-doctor or not-could diagnose you over the internet. You could visit a neurologist--just to put your mind at rest-but what you should address first is your anxiety levels. Anxiety not necessarily associated with any uderlying neurological disease, such as Parkinson's !!! For what it's worth, the last thing I expected to hear from any doctor prior to my diagnosis was the word "Parkinson's" (even though I had "textbook" symptoms of PD-unilateral rigidity, bradykinesia and rest tremor ). Peripheral neuropathy, yes, depression, why not, dystonia, probably, but Parkinson's? Young onset Parkinson's? Seriously? Most of us, especially with young onset disease, will tell you the same thing. just because you think, fear, imagine you may have PD does not mean you have it.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#7 saad

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Posted 15 August 2013 - 04:42 PM

I was told that not every neurologist is capable of giving the correct diagnosis for symptoms similar to mine. I was told to go see a MDS and listen to what they tell me.
I have tried to get a MDS from Rush Hospital in my area. But it's a catch 22. I have to be first diagnosed with PD before I can see their MDS. A hospital nearby has a lady MDS, but she's booked solid until November. I will get the appointment with her and hope that my symptoms do not become too debilitating and allow me to continue working until then.
My question is this: Would a neurologist that is not a MDS be able to diagnose early onset of PD? I might have something completely different from PD. I have no idea. But would a neurologist be able to properly diagnose me?

Edited by saad, 15 August 2013 - 04:43 PM.


#8 Beau's Mom

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Posted 15 August 2013 - 05:35 PM

I was first diagnosed by a regular neurologist. It wasn't until I found this forum that I heard the term Movement Disorders Specialist. Get your diagnosis from a local neurologist ASAP. If the neurologist is unsure, they may be able to refer you to Rush or the other MDS sooner than you can yourself. Also, begin documenting everything about how your symptoms affect your ability to work. This will be necessary when applying for Social Security Disability or Short term or Long term disability through your job, if you have it. My motto is prepare for the worst but expect the best. Maybe this won't be PD at all, but you will have all your bases covered.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#9 Daven

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Posted 15 August 2013 - 06:00 PM

Saad, I'm confused. Why would your job be in jeopardy? The Americans with Disabilities Act of 1990 (ADA) should protect your job. The ADA is a wide-ranging civil rights law that prohibits, under certain circumstances, discrimination based on disability. They can not fire you because you have Parkinson's.

Your doctor does not think you have PD, so you should go about life like you have an as yet diagnosed medical problem. Parkinson's isn't going to kill you. It does make life challenging to say the least, but everything I have read says I will die one day with Parkinson's not from it. You family needs you to be strong for yourself, so put that woe is me pity party in your back pocket and go do something fun with your family.

Dave

#10 saad

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Posted 15 August 2013 - 06:56 PM

Saad, I'm confused. Why would your job be in jeopardy? The Americans with Disabilities Act of 1990 (ADA) should protect your job. The ADA is a wide-ranging civil rights law that prohibits, under certain circumstances, discrimination based on disability. They can not fire you because you have Parkinson's.

Your doctor does not think you have PD, so you should go about life like you have an as yet diagnosed medical problem. Parkinson's isn't going to kill you. It does make life challenging to say the least, but everything I have read says I will die one day with Parkinson's not from it. You family needs you to be strong for yourself, so put that woe is me pity party in your back pocket and go do something fun with your family.

Dave


I am not completely disabled yet. But I feel like I can't do my job if these symptoms don't improve. I always thought that my employer, a big private university by the way, could fire me if I became disabled. Am I missing something in the US laws?
I have been a very loyal and extremely productive employee for over 15 years now. I am a full time professor by the way. Am I panicking and worrying for nothing? If I can't teach any more because I am too slow or my mind is not as sharp as it used to be, will they fire me? Please tell me they can't and I will be the happiest person with PD in a long while.

Edited by saad, 15 August 2013 - 07:12 PM.


#11 woodbee

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Posted 15 August 2013 - 07:38 PM

Saad,

Take some time to develop some tools to help you remain calm in the face of challenges or unknowns. One of those tools is meditation. Meditation is a simple activity that,for you, done every day, can become a real help. sit in a comfortable chair, not a cushy soft chair but one that has you sitting erect with your feet flat on the floor. Hands can rest on your lap. close your eyes and focus your attention on your slow breathing....in....and out, in and out....any time you notice your thoughts beginning to interrupt your focus on your breath, gently bring your attention back to your breathing. This will likely happen quite a bit. so just relax, bringing your attention to your breathing each time your mind interjects. do not judge your mind for wandering. Its active and wants to do what it's doing but you are teaching your mind to be calm by bringing it quietly back to focusing on your breath. Do this for 5-10 minutes morning and evening. After a week or so try bumping up to 15-20 minutes but if you cant do that 5-10 is better than nothing, You will soon rrrealize how the mind can over work itself. Our friends above have given you good advice.

Worry can magnify symptoms, and we also have the power to create symtoms if we believe we have them. So it's important to become an observer of your self ,,,objective but not beleiving you have X, Y, or Z before someone with critical observation and experience (an MDS), can take alook at you.

Also, even if you do have PD..just remember there is a lot that can be done to help you manage your symptoms for quite some time. In the mean time you might go on line and research the Americans with Disabilities
Act.(ADA). they probably have a hot line or info service you can call to talk to someone about your job.

also, when you are an observer of your self, make some objective notes when you have your symptoms...when they start, end, pain, no pain, tremor, no tremor, anxiety, etc but make yourself a rule... once you write it down, that's all you can do. close your notebook and forget about it. if you ruminate over it over and over then you need to meditate. The idea is to record it and let it go. Take your notes with you to your first appointment with your mds. Allso, call the office and request that if anyone cancels their appointment you would be willing to take their appointment slot if it is earlier than nov.
Good luck Saad

#12 Daven

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Posted 15 August 2013 - 08:58 PM

Saad, no they just can't fire you. I'm pretty sure there are some lawyers amongst this group that can chime in with a much more authoritative opinion. You can also contact the ADA Information Line at 800-514-0301. Your going to worry yourself to death. If you relax a little, you'll manage to get some sleep and you'll feel a lot better.

Dave

#13 invisable

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Posted 15 August 2013 - 10:15 PM

Saad, I will not be of a great help to you because I am pretty much where you are. But I can tell you, if you continue on like this you will get sick or hurt, it is not safe to drive with a lot of preoccupied worry. Many secondary symptoms can come with worry, believe me, I know, I am a "professional" worry, just ask everyone on this site, I am driving them all crazy. I too believe I have PD, but have not been dx'd. Four years of symptoms. PD can take quite a while to diagnose and every person presents differently.
Worry and anxiety can change so many things in your life and not for the better. Eating habits, which lead to stomach issues, headaches, relationship problems. I have actually taken off 2 complete fingernails and I mean complete from the cuticle down!! Ouch! and a potential for infection. Just trying to emphasize to you to try your hardest to calm down, even if it's just for a few seconds a day, which can lead to a few minutes, take small steps.

You can not change if you have PD or not, we believe we have control, but control is an illusion, we are all powerless to what our human impermanent bodies can get, we only have control on our mind's reaction to it.

As far as the job goes, NO, they cannot fire you, there is a disability law.

I see a therapist with a Phd & a psyc.(Md). I take Cymbalta (anti-depressent/anti-anxiety) and Kolonopin (to sleep)

Try to find some peace even if it is in the smallest thing, something to look forward to, like mine is bedtime, believe it or not such a thing most of us take for granted, I look forward to taking my Kolonopin and escaping into sleep. Another for me is enjoying a favorite food........(chocolate for me.)

The others are probably laughing at me giving advice on such a thing as worry, they have all helped me with this and I just wanted to let you know I do understand how hard and what an awful way it is to live, it will consume your life if you let it. I am in no way fine, but doing a little bit better than I was.

Please keep writing on this site, you will gain much support.


#14 Beau's Mom

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Posted 15 August 2013 - 11:23 PM

Invisable, whatever we teach we learn. Your post is a perfect example of how sharing our experience with others helps us just as much as it does them!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#15 invisable

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Posted 16 August 2013 - 10:42 AM

Thanks Beaus Mom, I'm starting to realize that is what it is all about, we can all be instruments for each other.

It did make me feel good to give back a little, even if it wasn't much.

Edited by invisable, 24 August 2013 - 09:07 PM.


#16 saad

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Posted 16 August 2013 - 12:52 PM

I have just come back from my doctor, and he found I had hyperthyroidism. He said that it can explain a lot of the symptoms I was having. He prescribed Clonazepam. But I didn't buy 100% into his argument. It is true that I have hyperthyroidism. I had 0.139 whereas the normal would be 0.4 to 5.5. But can it explain most of the symptoms I have? I honestly don't know. Part of me is desperate to believe it. Another part of me is very skeptical.
The doctor told me that my tremors are not "typical" of parkinsonism. He mentioned that he just saw today a lady that had the typical tremors of PD. The "pill rolling" as he called it. He said that my tremors don't suggest PD. Is this true or is it a bunch of BS to help me relax a little and be less anxious?

Edited by saad, 16 August 2013 - 04:43 PM.


#17 Beau's Mom

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Posted 16 August 2013 - 04:48 PM

I would pose that question to Dr. Okun. I have never had the pill-rolling type of tremor, but I sure do have PD!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#18 Donald Ennis

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Posted 16 August 2013 - 05:52 PM

I don't have a pill-rolling type tremor either. I do have PD also. I have resting tremors on both my right and left side, but more noticable on my right side. I'm kind of unusual that I went into the neurologist, explained my symptoms and family background, and told them I think I have PD. She ran some tests to rule out other possibilities and I had an official DX of PD with in 3 weeks of my initial visit. She agreed with my assesment from our first visit but wasn't willing to offically call it.

I also have Hyperthyroidism (Graves Disease) I read somewhere that hyperthyroidism can actually make it harder to diagnose PD because it masks some symptoms. But I would probably ask Dr. Okun as Dianne suggests since that is a pretty technical question.

PS. Invisable, no one is laughing, you put that very eloquently and from a perspective that I for one do not have on the subject of worry.

Edited by Donald Ennis, 16 August 2013 - 05:58 PM.


#19 Daven

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Posted 16 August 2013 - 08:33 PM

Saad, from what I understand hyperthyroidism can explain a lot of your symptoms. See http://en.wikipedia....Graves'_disease for further information. When I first started my journey last year, that was one of the first things they tested me for. Unfortunately, my thyroid is fine. I think you can take a deep breath, exhale and consider yourself lucky. I hope you get to sleep a little better tonight.

Dave

P.S. You still have a serious disease and you need to take care of this.

Edited by DaveN, 16 August 2013 - 10:24 PM.


#20 invisable

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Posted 16 August 2013 - 09:16 PM

Yes, I second the motion, what Dave said is correct.

I wish I had a thyroid problem, but no such luck, mine is fine.

Congratulations on your thyroid issue!!




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