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How quickly were you diagnosed?


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#1 Didi

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Posted 22 February 2014 - 08:37 AM

After one visit to a Neurologist  it seems we came away with what seems like almost a diagnosis of Early Parkinsons for my husband. We're really  kind of shocked to have the Dr. say it's Parkinsons so quickly, especially since my husbands symptoms are so mild. I probably shouldn't be so shocked because it was what I have been guessing he had for about 6 months now, but hearing a doctor say it now has me having second thoughts. I though it would take quite a while for a diagnosis. By husband very subtly and gradually has been having changes in his gait -- shuffling his feet, reduced arm swing, holding his upper body stiffly when he walks. It also seems to me he has some bradykinesia. He seems to be moving more slowly and deliberately --sometimes seems like mechanically and stiffly -- just seemed like his movements were often less fluid than normal. He would complain of muscle aches and pains but he works a physical job outside in the cold, so that didn't seem that unusual. He doesn't have a resting tremor -- but has a mild tremors when using his hands -- runs in his family -- his sister is especially shaky-- that part seems much more like a benign essential tremor.

We first went to our primary with his symptoms and he did a bunch of bloodwork and an MRI and referred us to a Neurologist. The MRI reported some scattered subcortical hypointense foci which our primary didn't know if was relevent to his symptoms so he wanted us to go to a neuro. The neurologist pretty much said the "spots" on the MRI were nothing.

After the exam he said he felt my husband had very early Parkinson's but was doing a bunch of more tests. I gave him what the Primary had already done so as not to repear them. The Neuro is repeating the Lymes test primary did and added: ANA,Hepatitis, HIV(If I had known I would have told him was quite impossible, my husband and I were childhood sweethearts and both virgins when we married), Rheumatioid Factor, Angiotensin-Converting Enzyme, Cryoglobulin, Q1, B6, Copper, Zinc Ceruloplasmin, Transglutaminase (we have a son with celiac disease) and a 24 hour urine heavy metal screen. Then he ordered and MRA and a DAT scan. We do appreciate him being thorough but it seems like an awful lot of testing.

Even though he's doing a lot of other tests he sat down and explained Parkinson's to us as if he felt he had it. He gave us a book on it and told us to Neurology News website for info. Even though he felt my husband's symtpoms were not severe enought to be treated yet, he prescribed Azilect because he feels it might slow disease progression. My husband feels like he pretty much has a sure diagnosis of PD, because of the way the neuro presented it. Since I have my own journey of diagnsis of chronic disease, I don't feel it's quite a done deal yet. We were both too shocked to ask how sure he was if this was parkinson's.

I started thinking maybe I exaggerated my husband's symtpoms too much (I think I'm in a denial stage). So I did ask him what he saw on the exam to make him think it is Parkinson's. He said he felt some rachety rigidity and saw some bradykinesia but admitted it was still very mild. It just surprised me that he could see that so quickly in an exam. Although I have had people close to us ask if my husband is OK because he walks kind of stiffly, the bradykinesia is only really noticed by me and my kids. But I guess that is what neuros are trained to do. He is not an MDS but has been a neurologist for 30 years and has a lot of PD patients.

My husband does not want to take the Azilect because after researching it doesn't seem like there is a great deal of proof of it slowing progression. He also doesn't want the DAT scan -- he figures if he is not ready to take meds yet why expose himself to the radiation. He kind of wants to watch and wait. He agreed to all the other tests. I'm not sure what to do-- to call the neuro and say he doesnt' want the DAT scan yet?  Any thoughts and advic would be appreciated.



#2 Rogerstar1

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Posted 22 February 2014 - 08:52 AM

He should take a round or two of Sinemet.  If symptoms disappear, he has PD.  If Sinemet has no effect, then it is something else.



#3 Didi

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Posted 23 February 2014 - 08:57 AM

Is Sinemet primarily for tremor-- or does Sinemet help with gait, stiffness(rigidity), and bradykinesia? My husband has only a very slight occasional tremor that seems more like an essential tremor. His symptoms are primarily shuffling feet, holding his upper body stiffly (looks like he has a sore back when he walks), not swinging his arms, and slowness of movement. But these symptoms are very mild and he functions fine -- the symptoms are annoying right now but not keeping him from activites of daily living. So we are not sure if his symptoms are strong enough to notice the response to Sinemet. . I'm also a little concerned about some slight symtptoms of depression, anxiety and even cognitive problems. Those are ever so slight, and I didn't mention them to the neuro because I didn't want to upset my husband. More than anything my husband seems to have lost some of his self-confidence, he seems more afraid of new things. If he has to do something new at work, something he doesn't know how to do, and has to learn-- it seems to stress him out more than it should. The depression symtpoms are more like pessimism-- not anything severe. Do those symtoms --mild depression and anxiety respond to sinimet? Are they symptoms of PD itself (a dopamine problem) or just a result of chronic disease itself and worry. I have a chronic disease myself, and it seems like so many chronic diseases can display some depression and anxiety symptoms. Sorry for all the questions. Even though my husbands symptoms are mild right now --we just want to make the right choices for the future. I feel like I am watching my husbands movements constantly for signs of whether this really is PD or not. Watching him walk, how he moves, paying attention to his memory and moods. But then I am afraid to let him see me watching him because I don't want to make him paranoid-- I know it will just make things worse. I try to watch him out of the corner of my eye.

Thanks for listening.



#4 Daven

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Posted 23 February 2014 - 09:41 AM

Hey Didi,

 

I wouldn't be surprised if your husband isn't doing the same thing to himself, watching out of the corner of his eyes.  I'm also very new to PD with very mild symptoms.  This time last year, I had a mild tremor, stiffness, and a host of other non-motor symptoms.  I've tried several prescriptions so far that have helped my symptoms but the side effects were to much for me to handle.  I will say, I was surprised how much each of the drugs helped with my PD and how much PD was effecting my daily life.  This is a slow moving progressive disease, meaning you adapt to the disease.  One year later, it takes me an extra hour to get ready for work because I'm moving so slow due to stiffness.

 

Dave



#5 Rogerstar1

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Posted 23 February 2014 - 09:57 AM

One indicator of PD is it's unilateral, one side only impact.  Tremor or arm swing reduction or even rigidity affecting one side only would suggest PD to me..



#6 PatriotM

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Posted 23 February 2014 - 04:56 PM

Didi,

 

I was diagnosed on the very first trip to the neurologist, although I think that is fairly uncommon.  I have almost classic PD symptoms, including resting tremor on one side; loss of arm swing on one side; "PD mask" (decreased facial features); balance issues; loss of sense of smell; stiffness (especially when sleeping); short-term memory problems; and more.  In fact, I saw the neurologist this past Friday and he had a poster in the examination room that listed 16 symptoms of PD.  I had twelve of them.  I don't think my diagnosis was particularly difficult. 

 

I have decided not to take medication so far, although the neurologist wants me to take Mirapex.



#7 Annikin

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Posted 23 February 2014 - 05:23 PM

My first symptoms were intermittent and vague enough 10 years ago to easily be attributed to other things. I already had another confirmed serious, uncommon brain issue we were dealing with so I did not even think to look for something else at the time and the doctors did not either. Looking back I started having additional symptoms that were out of the character w/ the original diagnosis that sent up red flags about 5 years ago.Once the arm stopped swinging, the tremor appeared more often, I was in an almost constant state of nuclear hot flashes and I started to experince anxiety, I knew we were dealing with something different. From then it took a little less than 2 years to confirm the diagnosis. I was in shock despite all that that it was actually YOPD.  Hind sight is 20/20 and now so much of the other things make sense- regardless, like most everyone else I question the diagnosis from time to time- especially when I feel good. Most diagnosis will be made over time with only a few folks being diagnosed on the first visit as progression is a diagnostic component of PD in and of itself.



#8 I_am_sassy

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Posted 25 February 2014 - 01:37 PM

I was diagnosed very quickly. I started noticing tremors in left hand in July,2013, balance issues, loss of left arm swing and loss of smell. I saw my primary DR in August and an MRI came back negative. I saw a neurologist October 31 for a very long consult/exam and he diagnosed PD. Due to the fact I am only 42 and DR is not a motion disorder specialist, he sent me for a 2nd opinion at Froedtert Hospital in Milwaukee.

Same consult, same exam and same opinion.

 

I remain positive and exercise every day. I've joined a support group. I'm thankful that I have access to good care and wasn't jerked around or condescended to by my 3 DR. All took me seriously. Compared to some stories I've read, I am so relieved.


Edited by I_am_sassy, 25 February 2014 - 01:38 PM.


#9 johnnys

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Posted 26 February 2014 - 10:22 AM

PD is a tough DX especialy for young people.A good reaction from sinemet is the best way I hear to know for sure. I opted no scan and am sure it was a good decesion.

 

Its about 5 years from first physical symptoms add a few years of anxiety before that. Im still thinking of fun things to do.

 

For me its a very slow progression.but this winter I have seen more stiffness betweeen doses.

 

Hope we get that Norester next week ,we need more snow



#10 MarciaJ

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Posted 26 February 2014 - 06:24 PM

I was diagnosed at first visit. If other things showed up neuro would run tests. But mostly PD was the result.
<3.<3.<3.

Age 64. Diagnosed 2006.

Meds-Carbidopa/levodopa 25-100mg cr tabs four times daily
Benztropine 2mg tabs twice daily
B12 tab for memory loss one daily

#11 TNdad

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Posted 26 February 2014 - 08:51 PM

I'm still waiting for final confirmation from my MDS. I did try my first dose of sinemet today and my tremor just about melted away in about 25 minutes and came back about 2.5 to 3 hours later. The stiffness returned too. I had a little sleepiness when it wore off. It's been an interesting day.




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