View Full Version : I have Parkinson's disease


Hyperman87
05-25-13, 05:34 PM
I have Parkinson's disease!

All of my various physical symptoms can be accounted for finally.:) It actually first made itself known about 10 years ago. I developed Sebeorrhic Dermatitis(A red flag sign of Parkinson's disease). Then 5 years ago an increase in intrusive thoughts, anxiety, Apathy, a worsening of ADHD symptoms.etc In April of 2011, I developed my first motor symptoms(Twitching, Stiffness, weakness, atrophy.) 6 months later, GI symptoms, & Tremor. This finally concludes a 2 year journey of figuring out what the hell is wrong with me.:) & why I take so many medications. I've Joined a PD facebook group & they all say yeah, that's what we go through.:lol: My Neurologist was pretty sure in January(although, he eventually wavered.) & my GP(as of Wednesday afternoon says" he feels I'm functional & in the early stages"). :(

namazu
05-25-13, 05:38 PM
Well, it stinks, but it must be a relief in some ways to have some clarity on the diagnosis instead of contending with many possible mystery ailments.

And hopefully this opens up some options for more effective treatment, too, instead of trying all kinds of shots in the dark.

Best wishes for good health as you explore this new avenue.

Sandy4957
05-25-13, 06:02 PM
That's a big bummer, Hyperman.

:( Sorry for you.

I have a friend who has it, as well. He takes some good meds to try to slow the progression. Good luck to you. :(

midnightstar
05-25-13, 06:40 PM
Sorry to hear that Hyperman :( :grouphug:

Lunacie
05-25-13, 06:48 PM
I was going to say I'm sorry but I think namazu has a point about finally
having an answer and a direction for treatment. My son-in-law developed
early-onset Parkinson's at age 40. The meds have helped him quite a bit as
he's still able to work. I think he's tried some experimental stuff, not sure
what all he's taken over the last decade. I wish you the best in figuring out
how to live well with Parkinson's and ADHD.

Hyperman87
05-25-13, 07:21 PM
I believe the process of dopaminergic neuron deterioration in Parkinson's disease.Actually dates back for me to at least mid-April of 2001.:(When I was just a young teenage boy(aged 14). It was then that I was in the midst of a non- motor Parkinsonian symptom that I had no clue of.One morning in the second week of April(2001). I got up & while I was getting ready for school. I noticed what looked like dandruff on my scalp & face. Years later I would learn this is called Seberrohic dermatitis( A common non- motor Parkinson's disease symptom.)


Exactly 10 years later almost to the day.I experienced my first motor symptoms(Stiffness, Muscle-aches, twitches, etc.) So to my fellow ADHD'ers if you notice Seberrohic dermatitis & eventually develop neurological motor/sensory problems.Please be aware it could be Parkinson's disease or a Parkinson's disease like syndrome.:eek:I actually believe there is a strong co-morbidity between ADHD & eventual Parkinson's disease(It's just my theory,however.)

http://www.youngparkinsons.org/articles/the-non-motor-features-of-parkinsons-disease

Asylum
05-25-13, 08:48 PM
I don't know what to say. (((Hugs)))

Meagan
05-25-13, 10:18 PM
That is rough; I'm so sorry. You seem to have a very good attitude. I hope your treatment goes well.

MellyFishButt
05-25-13, 10:48 PM
I looked into this pretty heavily for myself. I have suddenly had my body break down (signs pointing to a disc herniation but MRI not conclusive, numbness, and I have always had hot/cold flashes, but mostly I am colder than most people) and I have twitching as well as the normal ADHD symptoms including anxiety and depression. My GP laughed at me when i brought it up (yes, she actually laughed), so I have moved on and am just trying to heal myself any way I can. I haven't had any other symptoms though but I appreciate you trying to educate. I bet it's been a really confusing journey for you.

pellen
05-25-13, 11:31 PM
I'm so sorry to hear this but understand the relief that you must feel getting some sort of answer.

I have to tell you that I'm distressed to learn that seborrheic dermatitis is an early warning sign. I have that, as does my father who has PD.

I wish you the best of luck with this and want you to know that you will always find support here.

Sandy4957
05-26-13, 01:38 AM
Hyperman, you're pretty young, then, aren't you? :(

salleh
05-26-13, 08:50 AM
Hyperman ...I am so sorry to hear this ....don't know what else to say really .....just sorry for this ....

Crazygirl79
05-26-13, 09:36 AM
Oh I am so sorry, I really am!!

Sel :grouphug:

sarahsweets
05-26-13, 09:59 AM
hyperman, i read about this recently so you may have to google "provigil and parkinson's disease treatment" when I last looked into it, it was being tested as an off label/possible solution to help treat parkinsons' disease. I forget the mechanisim of action but it looked promising.

Hyperman87
05-26-13, 04:39 PM
I'm so sorry to hear this but understand the relief that you must feel getting some sort of answer.

I have to tell you that I'm distressed to learn that seborrheic dermatitis is an early warning sign. I have that, as does my father who has PD.

I wish you the best of luck with this and want you to know that you will always find support here.

Yeah, I suffered from Seborrehic Dermatitis for 10 years before the motor symptoms started 2 years ago. I didn't know what it was for 6 of them.

Hyperman87
05-26-13, 07:43 PM
hyperman, you're pretty young, then, aren't you? :(


25 :)

Blanched Dubois
05-26-13, 08:08 PM
There's a lot of hope for Parkinson's coming out of a lot of special scientists in amazing places with promising trials, cures, treatments surpassing other less effective ones all the time that's what I'd be studying and think good thoughts as best ya can! fight the good fight,friend :)
ya got some special gift or why would you be here now?

Hyperman87
05-26-13, 08:52 PM
I have Parkinson's disease & unlike many people who don't know how they developed the disease,I know how I got it.:(My symptoms of Seborrehic Dermatitis began in April 2001,while I was taking the original version of the ADHD drug Vyvanse.:) Only it wasn't called Vyvanse more than a decade ago. It wasn't a prodrug that had to be converted to D-amphetamine in the body. It was 100% pure D-amphetamine also known as Dexedrine(generic).:eek: If I had been made aware of other medication treatment options for ADHD(outside Ritalin,I simply couldn't take it.) back then & there really weren't many that were cheap(Cylert anyone? Tricyclic Antidepressants given to children & teens in 2001?).


I would have switched from dexedrine(generic) when I might've had a chance to prevent Parkinson's disease.However, I have no plans to stop taking Vyvanse for the treatment of ADHD. For one thing as Parkinson's disease progresses symptoms of ADHD in rare(young) patients like me(I'm only 25 years old.) only get worse(That is until the Parkinson's disease process is just about complete,then any movement at all is an issue.)I realized this 4 years ago that something was making my ADHD more severe.I just thought maybe OCD, Anxiety, even possible Bi-Polar disorder.In reality, PD was obviously the reason why my ADHD symptoms came back on so strong again,rather suddenly. Makes no sense to stop treating it now :lol: ADHD is so stressful,it would just make the Parkinson's symptoms worse.

I believehere in the United States, there's a reason why Dexedrine is nearly impossible to find. Why the only company that was still producing it stopped. (A) It got to be so cheap, It made no "cents" to continue it's production. (B) Dexedrine & Benzedrine,are linked to Parkinson's disease. Anyone whose used the original version of D-amphetamine(not Adderall or Vyvanse) from 1937 to about 2006(last time I remember a pharmacy carrying Dexedrine.)Unfortunately could be at risk of developing Parkinson's disease. This is in addition to all the usual risk associated with ADHD stimulants.

It also possible that there was simply a tainted version of the generic Dexedrine that I was exposed to. That the company who made it. Simply put too much of some ingredient in the medicine(By accident? perhaps) there was a situation like that with generic Wellbutrin. The manufacturer actually had to admit to it & the FDA recalled it. Who knows? It doesn't change the fact ,that ADHD is serious medical disorder & that millions of kids & adults actually need medication for it.It's just a shame there weren't more treatment options back then.Like we've got now!

If in fact Dexedrine in generic form, could actually stimulate dopamine producing neurons to death!

ginniebean
05-27-13, 03:49 AM
Hyperman, I know there is some relief in knowing what's wrong. You've posted on here before of your symptoms and the anxiety you had not knowing.

I sincerely hope that you get the best help you can.

tudorose
05-27-13, 05:39 AM
(((Hugs)))

Hyperman87
05-27-13, 08:00 AM
It is important for me to say that some of my post might just be angry venting at having Parkinsonism;) As I've also read that amphetamine has been used to treat Parkinson's disease(another reason I don't plan on discontinuing Vyvanse.):D It makes sense it could been a therapeutic option,as well.As both Dexedrine(now found mostly in Adderall, & Vyvanse) & levodopa stimulate the production of dopamine. For as much info as there is linking amphetamine to Parkinson's disease. There is also a lot saying the opposite. Maybe I simply had Juvenile Parkinson's disease?:umm1:






http://www.ncbi.nlm.nih.gov/pubmed/1097600

http://www.health.am/ab/more/amphetamines_may_slow_parkinsons_disease/

http://www.dukehealth.org/health_library/news/9157

Hyperman87
05-27-13, 12:44 PM
I must say this though! I have no idea what caused the development of my symptoms(In all honesty!).ADHD is a really challenging brain disease(like Parkinson's).So I do not want to seem as though I'm on an ADHD bashing brigade(As I certainly am not, I'm an ADHD'er first & foremost,always.Parkinson's disease won't change that. ADHD is what I've battled the last 20 years.I continue to do so.)

Attention deficit/hyperactivity disorder,is a very real, very legitimate,& often very devastating organic neurological disease like PD & both are very tough to live with. If I had it to do over again,I would still have treated my ADHD with Dexedrine(because it actually does work to treat this illness.) & I've seen reports that say Dexedrine can be an off label(Anti-Parkinsonian drug) in it's own right!It may even slow progression of the disease. Others say amphetamines can increase the risk of PD. Personally I feel that ADHD & Parkinson's are possibly two diseases with a similar underling etiology .That neurology hasn't figured out quite yet. A cure for PD could actually even mean a cure or better treatment options for ADHD. That would make millions of Parkinson's & ADHD patients as well as our families very happy.:D

For more information on both Attention deficit/hyperactivity disorder & Parkinson's disease.Just click on the Wikipedia link below on central nervous system diseases!:)

http://en.wikipedia.org/wiki/Central_nervous_system_disease

TygerSan
05-27-13, 07:10 PM
Hyperman, I'm so sorry to hear the news (though I suppose it's probably a bit of a relief to know what's going on, even if the news isn't wonderful).

You're so young, I'm wondering of anyone's tested you to see if you have the parkin mutation (inherited Parkinson's; it tends to be much earlier onset than idiopathic Parkinsons)?

Hyperman87
05-29-13, 10:11 PM
Nope, not yet! My docs have actually only just started to take a PD diagonsis seriously in my case anyway! So it might take em' while longer to offer a genetic test for a Parkin gene.:)