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feelinggroggy

New to PD - Parkinsonism - SWEDDs or Whatever

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Hello everyone!  My name is Scott and I am a 46 year old male living in Central Arkansas.  Like many of you, my journey with PD symptoms began several years ago with a very slight tremor.  In fact, I didn't notice it initially.  It was my migraine specialist at Mayo that did at an exam in early 2013.  Because I was not there for tremor issues, he did not explore what could be causing it... no big deal.  Over the next two years, I began noticing the tremor (shaking of the fingers in the right hand) after doing some manual labor or when fatigued.  I pointed this out to my migraine specialist at Mayo in late 2016 and he again saw the tremor.  So, he began the referral process to see a MDS at Mayo.  Unfortunately, because I lived 8 hours away and couldn't schedule a week of time away for testing, I never got in to see the MDS.

Throughout 2017, other symptoms began showing up: Extreme fatigue, muscle stiffness in right leg & arm, balance issues, slow walk, and troubles getting up.  Because of working two different jobs (minister and care giver to an autistic man) and living 100 miles from a MDS, I never did anything about it; plus, I knew that we would be moving sometime during the year.  So, I just pushed through the issues without saying much.

It all finally spiraled out of control in March of this year while on a trip to Guatemala to build homes.  While there, I began having tremors in my right hand/arm that wouldn't stop unless I was in bed asleep.  The stiffness, balance issues, and slow walk also got much, much worse.  I came home a few days later to tell my wife what happened.  She along with others noticed the symptoms.  But, nothing was done because a few days later, I was admitted to the hospital with severe septic shock that nearly killed me.  After 8 days in the hospital and 3 weeks of treatment & therapy at home, I got back on my feet, except for all the PD symptoms.

I saw a neurologist in mid April who diagnosed it as Parkinsonism.  He was initially concerned because I had been on a 25mg dose of Seroquel at night for sleep over the prior year.  Although, the symptoms began long before the Seroquel, so, it was just one theory in his mind.  He started me on Sinemet 25/100 3x p/day.  Within an hour of taking the first dose, I noticed a major difference.  I went back to the neuro 6 weeks later and he decided to keep the dosage the same.  Since he was not an MDS, I decided to get a second opinion and saw a specialist at UAMS in mid July.

The MDS saw me at my worst early in the morning.  Sinemet had not kicked in yet.  So, he saw most of the symptoms as well as how I looked post medication.  He agreed with Parkinsonism, but also wanted to do a DatScan.  I had the scan last week and the radiologist said that it was normal.  The MDS has since notified me that he saw the scan as normal as well.  He said it was not Parkinson's (yeah!), nor does he see it as Parkinsonism (huh?); instead, he is calling it SWEDDs.

When I go back for an appointment in mid August, he will go over the scan, and will probably recommend seeing a specialist out of state who specifically works with SWEDDs patients. Can't say I'm happy about this!  First of all, that would mean going 6 to 9 hours away.  Second, he has not done any additional testing such as an MRI to rule out other disorders.  And, third, Sinemet is working pretty well each day with the symptoms.

So, with all that said, I'm not sure if I'm a PD - Parkinsonism - SWEDDs or whatever person today.  But, I'm determined to come to some conclusion.  I do not like living without an answer.  And, I certainly do not like living with these issues.

Edited by feelinggroggy

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I'm not a doctor; I am a PWP (Person with Parkinson's). Could you tell us what SWEDDs stands for? I have all those symptoms and more and respond well to Sinemet. The DaTscan wasn't available when I was diagnosed in 2010 after 20+ years of accumulating symptoms; I had one in the summer of 2013. It showed minimal uptake of dopamine bilaterally, which simply means that my PD had progressed from the right side to the left side, as it does in most PWP.

I suggest you pose your question in the Ask the Doctor section of the Forum. Dr. Okun may be able to shed some light on your situation.

Dianne 

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Hi Dianne,

SWEDDs means Scans Without Evidence of Dopamine Deficit.  In other words, the DatScan does not show any deficiencies of dopamine. 

In my case, the PD specialist said that I do not have Parkinson's Disease because of what he saw on the scan.  But, since I have PD symptoms and am responding well to Sinemet, then there is some other type of disorder going on of unknown origin.  I will remain on the Sinemet and be monitored until the specialist decides to do additional tests, another DatScan is done a year from now, or I get a referral to someone else. 

I asked for some clarification on a few issues from Dr. Okun and got a response back from him this afternoon.  As a result, I'll probably try to get into a specialist at Baylor or the Univ. of Kansas sometime in the near future.

Scott

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Scott, I was where you are 4 years ago, it took another year to be diagnosed for me. 

I hope by some miracle that you do not have PD. If you do try not to worry too much time will be the tell all. 

It took me going to the right doctor who called in three other neurologist, and the better part of the day, going over previous testing, and doing exams, before I received the preliminary diagnosis, reached by the team.

 

The first pill the following morning confirmed the diagnosis for me. I was scheduled with a MDS, who confirmed the diagnosis three months later. 

That was the years ago, and I now take 8 c/l during the day, and an extended release at bedtime. I am also one of the first few Gulf War veterans to be Service Connected for Parkinson's Disease.  

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Scott,

You should also ask your doctor the next time you see him if it could be DRD (Dopamine Responsive Distionia). It can sometimes show like Parkinson’s. If it is DRD, you should be able take a small dose of Sinemet to treat  your symptoms and not have to worry about it getting worse.

Dave

Edited by DaveN

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Dave,

Thanks for the information.  I sent an email to my doctor asking if it could be DRD.  From our previous conversations, I doubt that he thinks it could be since the symptoms more closely align with PD.  I know that I would be very happy if it was DRD based off of the research that I've done.  

Scott

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FG......sounds like its been a rough road. The unknown is definitely difficult. They'll figure it out. After that things seem to fall into place. Hang in there.

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