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Tangandchris

Maybe PD??

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Last week my husband went in for a routine check with a new PCP. While there I brought up a tremor he's had for many years that has gotten worse over the last year or so.....it is a hand tremor. Doctor did a movement test with his arms and said that he was "cog-wheeling" which could be an early sign of PD.

We are seeing a neurologist tomorrow and I'm scared. His MRI was good, but that was more for headaches and from what I've read PD isn't seen on MRI.

we've written down some other issues to ask about. Does anyone have any suggestions for discussion with a neurologist?? Also wondering if tremor with PD is always resting?

 

Thank you and I hope you don't mind that I've come here asking questions.

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From the very limited info you posted, it does sound like it could be PD. However, fear not, PD isn't the end of the world. As you said, he's had the tremor for many years. In fact, the experts tell us that a person has probably had PD for about 20 years before enough dopamine is depleted to cause symptoms. So, while no one wants to be diagnosed with PD, it could be a LOT worse.

 

As for what to discuss with the neurologist - I would make a list of his symptoms and discuss them with the neurologist.

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In addition to what you listed, some early symptoms for me were smaller handwriting, lack of arm swing, constipation and dry eyes. There is good information to be found on this site about the early warning signs. Check out the free literature section. NPF will be happy to mail you information on warning signs and early detection. I do not recommend that you overwhelm yourself with too much information prior to diagnosis, but reading basic lists of symptoms might give you some additional information for the first neurologist visit.

 

Wishing you both the very best.

 

Dianne

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Thx for feedback, we have a list and we are just going to see what happens tomorrow. I should add that he is only 42, so young for PD maybe. Other issues are trouble swallowing liquid, a weird throat clearing tic, and ED.

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This place exists in large part to help folks in your position.  Nobody is going to be upset with you posting your questions here.

 

Regarding age, I'm 38 and was diagnosed back in September.  Michael J Fox was 29 when diagnosed.  Occasionally people will develop PD in the late teens or early 20's.  42 is not too young.  Unfortunately.

 

PD tremor usually is a "resting tremor" on just one side though as the disease advances it can progress into being an "action tremor" and/or affecting both sides of the body too.

 

A good neuro will order a number of tests.  One will be for Wilson's disease which is a copper metabolism disorder.  It's quite rare, but in under 50's that present with resting tremor it's part of the routine.  That will involve a blood test and a 24 hour urine collection.  Other tests will be for thyroid function (blood test).  If the MRI he had was recent enough and done the way they do it when screening for tumors, MS lesions, etc they can probably just read those images.  Otherwise he'll likely get another MRI.  Possible they'll do an EMG/nerve conduction test on the affected arm to (hopefully) rule out ALS.  Finally if the neuro is unsure if it's PD or Essential Tremor they may request a DaTscan.  That is a nuclear imaging test to see if the dopamine producing and recieving cells are still as plentiful as they should be.  DaTscans are quite expensive ($3000-18000 depending on who you ask, $6-8k seems to be about average) and lots of insurance companies are resistant to approving of the procedure.  Ironically if you are on Medicare they pay for it without any fuss, usually.  Sometimes they will skip at least some of those tests and go straight to a Levodopa trial if all signs point strongly to PD.  If your DH responds to the levodopa then it's a dead ringer for PD.  My neuro cancelled the EMG and DaTscan she was pushing for due to my strongly positive response to levodopa.

 

Questions to ask.  Hmm.  I'd definitely be asking about what else it could be and why/not the neuro does(n't) suspect those issues.  Diseases that can present at initial stages similar enough to PD to get a mis-diagnosis are (but not limited to) Wilson's Disease, Multiple Sclerosis, ALS (Lou Gehrig's Disease), Essential Tremor, some brain tumors, and psychogenic disorders (psychiatric disorders that manifest themselves physically - note these are not cases of faking, or attention seeking).  

 

Ask the neuro if they are a Movement Disorders Specialist (MDS).  If they are not, ask how often they treat or diagnose PD patients or those with the other diseases mentioned above.  If they are not an MDS, depending on how things go you might want to ask if there is an MDS they would recommend.  The advantage of an MDS over a regular neuro (i.e. non-movement disorder specialist) is the MDS will be more up on the latest research and treatments for PD, and they'll be better trained at differentiating between PD and the other various diseases I mentioned.  Some non-MDS neuros still think PD is strictly a 60+ year old disease and will refuse to consider it in younger patients.   

 

I would definitely ask about any nutrition or exercise that is recommended.  Far as I can tell there's not any particular diet that is proven to help PD.  Plenty of people feel like certain diets help but the scientific evidence is lacking.  That said, if he starts taking levodopa then the timing of protein intake relative to meds is important as protein will interfere with the absorption of the levodopa in the intestine.  For most folks taking meds at least 30 minutes before eating protein, or at least 1 hour after eating protein is sufficient separation.  If constipation becomes a real big issue then that time between meds and eating protein can require significant stretching.

 

Best exercise is generally the one he'll actually do.  But lots of people with PD have found a lot of benefit from yoga, tai chi, boxing, bicycling and others.

 

Assuming that PD is the most likely diagnosis, ask about whether meds are really warranted at this point.  And if the neuro wants him to get on meds right away ask lots of questions about the meds they want to try.  Some classes can have really disturbing side effects, others often have very limited effect and can be quite expensive.  Dopamine agonists are known to cause obsessive behaviors in some people including compulsive spending and hypersexuality, and are known to cause sudden sleep attacks.  The MAO-B inhibitors can be quite expensive (Azilect particularly) and most people that take them find the benefit to be limited.  I had some bad side effects from Azilect so I quit taking that.  The "gold standard" med is Sinemet (a combination of Carbidopa and Levodopa).  Still one of, if not the, most effective medicaiotn.  Levodopa is the metabolic predecessor to dopamine.  Since dopamine can't cross the blood/brain barrier but levodopa can the use of levodopa can restore the missing dopamine from the brain and relieve symptoms very effectively.  The carbidopa is there to prevent the metabolism of levodopa into dopamine while the levodopa is still in the blood stream.  That lowers the amount of levodopa required to be effective for any given dose, allows a long time between doses, and dramatically reduces side effects (especially nausea) from the levodopa.  Main downside to Sinemet is that after several years and once a high enough dose becomes required dyskenesia (involuntary writhing motions) can set in.

 

Anyway, good luck with the neuro appointment tomorrow.  Let us know how it goes.

Edited by stump
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I was diagnosed last year... I am 44 now.  I agree that it can be signs of PD.  Chances are, if he has it, he has more symptoms you haven't noticed.  For years before my diagnosis, I thought it was spine issues, personality change, stress, etc...  I wish I had addressed it earlier because of how far I let it go (until I couldn't walk) and how that most likely caused a longer "recovery" on medications.  To me, PD was a great answer!  That meant I had a real reason for all the problems and people (and doctors) would no longer give me confused or strange looks, and I would simply shrug my shoulders  (oh wait... I couldn't do that) or live in constant frustration.

 

With medicine, PT, and a good Neurologist along with a Movement Disorder Specialist, it seems I have dialed back at least 10 years.  My wife now realizes how much I had changed.  It was hard to tell when it can seem so gradual. So, I am literally back on my feet and back to work managing 4 kids and I am able to keep up the pace.  I say this to warn you not to belittle things, but also not to worry.  There are so many treatments and options out there that have helped many.  Also, the basics of stretching and exercise can do wonders! 

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Welcome , if it is PD like most have already said it's a little bit of a game changer but not a death sentence . It will be scarey at first until you come to terms with it .  It can either control your life or you can learn how to control it and not let it be the defining factor of who he is .  I was diagnosed last June like your husband I had a resting tremor , I had already been asking my Dr why the muscles in my legs and back were stiff all the time . most of the answers I got were your getting older . I didn't buy it as I am active and only 51 .When the tremor got worse my wife made an appointment and said your going . my pcp sent me to a Neurologist that day (lucky they had a cancellation ) .He spent about a half hour with me having me do all sorts of things From walking to checking my balance etc. . If the Neurologist you are going to doesn't spend some time putting your husband through a lot of tests in his office I would be skeptical . as I was misdiagnosed 2 years earlier with essential tremor by a different neurologist who didn't spend 5 minutes with me . Either way good luck ! Dan.

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Hello,

I love this place.  So much amazing information.  My thoughts on your post is get a DAT/SCAN done.  My world changed when I received the results of this test.  It gave my Movement Disorder Doctor a real view of my brain and how Parkinson's is effecting me.  The test can confirm or deny Parkinson's.  

 

I look forward to reading about the journey we are all on.  

 

Jaxs

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Hey, I'm eighteen and I've been tested for Huntington's, Wilson's, and essential tremors. I have an appointment to get tested for PD in a week from Monday. I'm really scared and hoping I don't have it. I've had tremors for about three years now, and recently have acquired urge incontinence, and more insomnia than usual. I'm also on Zoloft, trazodone, and propanolol..I just kinda want to know what you guys think so I know more of what to expect...thanks.

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Hi ashesmxx,

 

Why do you think you have anything other than general anxiety that could rattle your nerves and cause movements like tremors?  Anxiety can cause incontinence and the worrying can lead to insomnia.   When I was 18 I had a lot of uncertainties of where my life was going and I developed all kinds of symptoms that turned out to be nothing more than an over active imagination.   I hope this is the case for you too.   Welcome and have a good day. 

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I've been diagnosed with anxiety, depression, and PTSD since I was fourteen. My doctor is having me get tested because I can no longer walk down stairs because my legs are shaking so bad, I've lost control of my bladder, and I can barely write.

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Do be careful of your medications too.  It's now turning into the chicken or the egg question.   Is it possible your meds are giving you side effects that are making you weak in the legs?  It's so frustrating right?  I have a niece your age and she had a mental breakdown when she was 14 due to stress from school and peer pressure.   It's a lot to handle and I do hope you get this worked out soon.  You are smart to get everything tested just in case.  I just hope it will not be PD for you.

Edited by miracleseeker

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Tang and Chris I hope all goes well. Someone mentioned the list of symptoms for the doctor. Most the comments come from experience with PD. The comment made(IMO)  that PD is NOT the end of the world is my top pick. Your concerns if I have it, we all have been there. As you can see from other topics that many members still work, Run,Go on trips,hunt,fish,walk the dogs, swim,go on vacation, drive and on and on and on. When you go to the nuero dr.  Go in there thinking about what I can do and leave knowing it will get better.  It all works out. Today I planted flowers with my 10 yr. old grand daughter and took her for lunch. I plan on planting more flowers in the future with my 3 yr. old grand daughter.

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I had symptoms of PD back in 2011, but it was overlooked as PD it was me going through a divorce. I got diagnosed with PD by a Neurologist that specializes in movement disorders less than 2 months before my 45th birthday. I eventually had all of the symptoms of PD. Small handwriting, poor posture, losing my balance, cannot smell, resting tremors, rigidity muscles, masking of the face. When I first got diagnosed, I cry at times, but overall, I am glad I found it. At first you do feel scared and alone. Take a deep breath, and educate yourself about PD. It's not the end of the world. When I tell everyone I have PD. They're like I am so sorry. What's PD? April is Parkinson Disease Awareness month.

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