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Doubleup

Not Diagnosed, However Need Advise

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otolorin    30

Hi Doubleup, anxiety, depression and apathy are crazy symptoms,not to talk of the fear of  PD medication side effects.Let's pray you will not have a diagnosis of PD.The best thing that can happen to you right now,is if you get an early diagnosis,so you won't have to contnue waiting and dealing with intensifying psycological symptoms..Sometimes you could get some type of harsh support on this forum,do not take it personal.People are wired differently with their opinions.According to ellaangel2.We have all been there before.When I first joined these forum,I received some harsh support,which I termed tough love.Please call your hospital and request for an earlier appoinment,if someone should cancel.Keep fighting!

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DaveN    430

EllaAngel, first off Doubleup has been told by a Neurologist and two online Neurologists that his symptoms are not consistent with Parkinson's disease. He has an appointment with an MDS at Stanford coming up to address his symptoms. You of all people should know that it's not healthy to chase or believe you have something when a doctor has told you don't. I hope Doubleup figures out what is wrong so they can get some peace. I believe I am being supportive by giving my honest opinion. To convince someone they have a disease because you had difficulties yourself is not helpful. My doctors were unsure when I was first being diagnosed. If you have Parkinson's, it will become self evident eventually. I only recommend what I did and that is to live your life as best you can.

Dave

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ellaangel2    191

DaveN - I am not "convincing" her that she has a disease.  I am merely acknowledging her symptoms and fears of a disease.  I have heard of many patients that were told by Dr's and yes even MDS's that they do not have Parkinsons, that is because very early on the cardinal symptoms cannot be seen and documented as such; a doc, by law, needs to "see" 2 cardinal symptoms, because there is not accurate medical test for PD other than a DATSCAN and that is not across the board, when, in fact, a year or two later the person was diagnosed with Parkinsons.

The part you don't understand DaveN, is it is hard to "live your life as best you can" when you are worried sick about something, I understand because I have been there.

 

Edited by ellaangel2
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Gulfvet    37

Not all doctors are correct 100% of the time. Especially neurologist when there is no absolute test. Even with as much as is known about the human brain, more is learned every day.

As we all know PD is a complicated diagnosis, and one that is for many patients misdiagnosis, happens. 

For those of us who have been members of the forum for awhile, have heard many times of people who have been told they don't have PD, then was seen by the right doctor and diagnosed right away.

We have also heard the patients who were diagnosed with PD to find out they did not have PD.

Thankfully PD is a slowly progressing disease and the correct diagnosis eventually is revealed. 

So, long story short, relax take a deep breath, find a trusted MDS. And live your life to the fullest.

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waruna01    52

There is absolutely no benefit in diagnosing PArkinsons early. If you have PArkinsons, it will surface eventually and your body will tell you have problem in your body, NOT YOUR MIND !!!. If your mind is telling you have Parkinson's, then you don't have Parkinson's. People usually find out Parkinson's out of the blue and as a surprise for both parties. They don't guess that they have Parkinson's and get it confirmed by a doctor. That is not how it works. Why not live like a normal normal person until then? What is the point of knowing early? If your smell is still good, which means your brain cells in substantia nigra are still good and firing properly, it's a good enough test to exclude Parkinson's without spending thousands of dollars into expensive tests and specialist doctors. There is absolutely no benefit in getting an early diagnosis. It will only make you face problems with insurance and other life matters with your friends and family. In fact, you shouldn't  believe you have Parkinson's even after getting an official diagnosis for several years because it could be wrong. That is the only sure way to know you have Parkinson's by denying you have Parkinson's as long as you can. You can't keep a rubber ball under water. Parkinson's will surface and show its face at the right time if you are bound to get it. Don't runaround looking for Parkinson's. Until then, please enjoy your life. people are falsely diagnosed when they don't have Parkinson's because of paranoia 

Edited by waruna01
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DaveN    430

An early diagnosis of Parkinson's will also make the following more difficult:

  1. Obtaining Health Insurance  because you now have a pre-existing condition.
  2. You'll not be able to obtain Long Term Disability Insurance.
  3. Life Insurance rates will sky rocket.

These are things that everyone should consider. You're not going to die from Parkinson's.

Dave

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PatriotM    807

If three neurologists have told you that you don't have PD, then you likely don't have it.  I'm not sure that shopping for a doctor that will give you the diagnosis you want is smart.  If you keep shopping, you will surely find one that will diagnose you with PD.  Then, you will both have the wrong diagnosis and, even worse, not have the correct one. 

If your symptoms are not significant enough to diagnose PD,  then after the doctors have excluded other serious illnesses, you would be smart to live your life to its fullest and forget about PD.  If you still suspect that you have PD and won't let it go, then now is the time to start the best treatment for PD - EXERCISE!  If you're not willing to exercise, then what's the point in pursuing a diagnosis? 

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ellaangel2    191

I'll admit, all good reasons above for not seeking a diagnosis early.........good reasons (on paper, that is.)

The human brain also needs to know "why" sometimes.  "Why" am I getting these symptoms, what is wrong with me.  Too many unanswered questions can lead to extreme stress.  Stress that is as unhealthy as having the disease itself.  

I do not agree with Waren, not all people are "surprised" when they get a PD diagnosis, some are, but not all, many have had unexplained symptoms that cannot be "seen" by Dr., have done their own research and have found their answer, well before Dr. (finally) sees 2 cardinal symptoms.

It is very easy to minimize or discount someone else's anxiety, anxiety is also an illness and one that needs to be treated seriously.  If getting answers will ease that anxiety, then answers are "medicine" for ones anxiety.

It is not "black and white" boys, think outside the box a little.  People cannot be talked out of anxiety, it is real, very real and very dangerous, affecting ones whole life.  If it that easily cured (by talk) there wouldn't be countless medications for it.

Wonderful for you that you have never experienced this type of anxiety, believe me, it is a serious illness,  have respect for those that have it.

 

 

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miracleseeker    675

Yes Ella.  Anxiety is a very serious condition best looked at by a Psychiatrist and not a Neurologist  when it's all in your mind.   You can't live your life fearing PD especially when NO ONE is telling you that you have it so why the anxiety about it?   You may get it someday but for years now you still haven't been diagnosed so be thankful and let it go.  The mind is very powerful.  You can control how you react to things and choose to live in fear or break away from it.    I'm a woman so would it make any sense for me to fear getting testicular cancer?  Hey it still might happen but I am not going to anticipate it happening.  

I'm not mocking you but just trying to get you to see things from a different perspective.   Sometimes we really do over think things.  I'm very guilty of that and it does take an outsider to get the point across and really make you think.    Of course we can always say oh... you don't understand or you are not in my shoes and that is very true.  Live your life the best way you can because we are not getting any younger.   If you must insist that you have it then do what you can to out smart it.  Exercise like Patriot said and keep moving.   It will give you endorphins that will make you happier at the same time and lose extra pounds that most of us all carry.    I wish you peace of mind.  For me I take Xanax and that does wonders for me.    We all do what we can to push forward.  You can do it Ella.  You are a strong woman.  :)

 

 

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Doubleup    1

Thank you all for coming to my defense and I fully understand the criticism from others.

I don't know that any "video doc" would diagnose Parkinson's off a simple first call. I had anxiety and worry on those days and signed up for an opinion... The first "in person" neurologist I saw in person had a bit of an ego and was very focused on my cognitive symptoms and told me I had too much anxiety to fully test that further. He labeled my tremors as essential tremors even thought they are constant occur at rest and increase with stress, anger or anxiety. I have not tried the alcohol test however I might. I don't drink as alcoholism runs in the family and I was on my way down that path years ago and stopped that monster. I do not fear getting sucked back in however I would fear more the anxiety if the tremors didn't diminish with alcohol I would then get another dose of anxiety without a true medically proven test. Also something like wine which would be my first choice can have a lot of sugar so I could see that actually increasing tremors... So I am on the fence on that one.

My second "in person" neurologist that I feel did "care" and spent a good hour with me said he "could not diagnose me" and said the tremors were "odd". Somewhat in between essential and maybe PD. He gave me the option to wait it out or be referred. Maybe there is no point in the referral as like you say all I should be doing early on is exercising, which I am doing. However a diagnosis in as good or bad as PD may be would at least tell me I am not "crazy" and I would be able to focus on acceptance and what is most important in life.

Parkinson's or not, I do feel my symptoms are 80-90% dopamine and neuro transmitter related. No that doesn't mean I have Parkinson's now "yet" or ever... I was prescribed a medication that stimulates dopamine output to a far from normal level and now being off I have many Parkinson's like symptoms. Medicine that should not be on the market in my opinion. It's been close to 4months now and I would have expected an improvement... So PD or not my brain is not in balance that is pretty much a fact. Will it heal? I can only pray.

Thank you everyone for your kind words and putting me in "check" is welcome as well. I am just sorting myself out

 

Edited by Doubleup
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PatriotM    807
5 hours ago, ellaangel2 said:

The human brain also needs to know "why" sometimes.  "Why" am I getting these symptoms, what is wrong with me.  Too many unanswered questions can lead to extreme stress.  Stress that is as unhealthy as having the disease itself.  

Yes, humans like to know what is wrong with them.  However, worse than not knowing is getting the wrong diagnosis.  Doctor shopping for a specific diagnosis is a great way to get the wrong diagnosis.

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ellaangel2    191

Miracleseeker - Thank you for the pep talk, but I was not writing about me, I was writing about anxiety in general and specifically to defend Doubleup's inquires and worries about her symptoms..........

Believe it or not people........."I am over it!"  Yes, I am!  I truly know now in my heart and soul that I do not have Parkinsons!  I could have bet my life savings that I had it......but, I can finally say I don't.  

I know a lot about PD, probably more than the average person that has PD, I "lived" it for many years.  Because I lived it for so long, I feel a bond to people that have PD, I seem to understand a lot of what they say and feel.  Sounds a little odd, doesn't it?  Well, I'm being honest.  I respect and admire people with this very misunderstood, challenging disease.

I don't write often, but I felt I could relate and help support Doubleup in her journey.

btw - If you all want me off of here, I'll be glad to go........I guess I really don't belong anymore, that is true.  Just say so, and I'll be on my way.......

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waruna01    52
On 9/14/2017 at 8:31 PM, ellaangel2 said:

I'll admit, all good reasons above for not seeking a diagnosis early.........good reasons (on paper, that is.)

The human brain also needs to know "why" sometimes.  "Why" am I getting these symptoms, what is wrong with me.  Too many unanswered questions can lead to extreme stress.  Stress that is as unhealthy as having the disease itself.  

I do not agree with Waren, not all people are "surprised" when they get a PD diagnosis, some are, but not all, many have had unexplained symptoms that cannot be "seen" by Dr., have done their own research and have found their answer, well before Dr. (finally) sees 2 cardinal symptoms.

It is very easy to minimize or discount someone else's anxiety, anxiety is also an illness and one that needs to be treated seriously.  If getting answers will ease that anxiety, then answers are "medicine" for ones anxiety.

It is not "black and white" boys, think outside the box a little.  People cannot be talked out of anxiety, it is real, very real and very dangerous, affecting ones whole life.  If it that easily cured (by talk) there wouldn't be countless medications for it.

Wonderful for you that you have never experienced this type of anxiety, believe me, it is a serious illness,  have respect for those that have it.

 

 

My dad has Parkinson's. I spent several years with an extreme paranoia that I was getting Parkinson's at a very young age. . I was anxious. I had resting tremors. My right arm was not swinging properly. I had elbow pain. Rigid muscles Knee pain. Depression. Constipation. Insomnia All the classic Parkinson's symptoms that you can think of. I would google all day about Parkinson's and even went to doctors. I would discover a new symptom daily. Finally I had enough and told myself if I am going to get Parkinson's, let it be. (This is key to solving the problem by accepting the problem gracefully) There is nothing I can do about it other than exercise and eat healthy brain food. I convinced my self that I am not going to worry about Parkinson's until my smell is completely gone and stopped paying attention to my body. Note the word completely. Otherwise my brain will make me think that I have diminished smell and will drag me back into the anxiety cycle lol.. Slowly  all the symptoms miraculously disappeared within few months and my stress levels went down. I realized it was all my mind play tricks to heighten my anxiety because it got to the point my brain started craving for anxiety like body craves for sugar. So it comes up with something to match the picture.

 

Note, If you take dopamine meds herbal such as mucuna or other otc, it may interfere with natural dopamine production. So wean them off so your body make its own dopamine 

Edited by waruna01
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miracleseeker    675
15 hours ago, ellaangel2 said:

Miracleseeker - Thank you for the pep talk, but I was not writing about me, I was writing about anxiety in general and specifically to defend Doubleup's inquires and worries about her symptoms..........

Believe it or not people........."I am over it!"  Yes, I am!  I truly know now in my heart and soul that I do not have Parkinsons!  I could have bet my life savings that I had it......but, I can finally say I don't.  

I know a lot about PD, probably more than the average person that has PD, I "lived" it for many years.  Because I lived it for so long, I feel a bond to people that have PD, I seem to understand a lot of what they say and feel.  Sounds a little odd, doesn't it?  Well, I'm being honest.  I respect and admire people with this very misunderstood, challenging disease.

I don't write often, but I felt I could relate and help support Doubleup in her journey.

btw - If you all want me off of here, I'll be glad to go........I guess I really don't belong anymore, that is true.  Just say so, and I'll be on my way.......

Ella -  Are you on any forums for people with Anxiety?  You may be of tremendous help and comfort to them because you have actually lived with it.  Speaking as someone who does not have PD even though I take care of my mom who has it,  I was once told by someone who was banned from this forum that  I don't know what I'm talking about because I don't have it.  That hurt my feelings a lot because it made me feel like I was blowing hot air and not contributing a whole lot.  So in that respect if you still feel that you can give support to people even though you never had PD then go for it.   However I must add that reading what "experts" say are clues to having or not having PD is rubbish  because a lot of which didn't apply to my mom yet she has it.   I think people tend to take advice more seriously from actually PD sufferers for obvious reasons.   I totally respect that and I do not take offense.   Therefore.. I give my 2 cents as how it relates to my mom or what I have witnessed first hand from her.  I hope that makes sense.   Have a great weekend everyone!

 

 

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stump    466
On 9/14/2017 at 3:22 PM, ellaangel2 said:

btw - If you all want me off of here, I'll be glad to go........I guess I really don't belong anymore, that is true.  Just say so, and I'll be on my way.......

I certainly have no issue if you stay and continue to post.  If some others feel differently, well, that is up to them.  If I suddenly found out I didn't have PD after all (that would be quite welcome, so long as it wasn't something worse taking its place) I probably would drift away from here.  But that's me, and I certainly wouldn't leave because one or two people out of a large group though I should.  But, I'm also stubborn.  

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ellaangel2    191

Thanks Stump.

btw - Never got any diagnosis.  Symptoms of odd sensations and internal tremors have 90% subsided, still get a few every once in awhile..........weird huh?

 

Edited by ellaangel2
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LAD    216

Ella-do the happy dance and do what works for you! I do have anxiety- it's my primary trigger for tremors! And it is very real with PD. And often overlooked. I exercise when I'm having a bad day! It helps me to manage it.

So....PD or not ... Keep moving!!

 

LAD

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Linda Garren    752

Ella, I hope you definitely stay with us.  We feel you are part of us, so don't feel uncomfortable to keep posting.  :-)

I'm so very glad to hear that you are 90% free of the anxiety you had been experiencing.  From having experienced the awful, awful affects of (social) anxiety, I am very happy for anyone who has worked through to the other side of whatever kind of anxiety they deal with.  I am a totally different person inside and out from having faced it,  gotten help, and then working hard to get through it.  It was not easy.  But so, so worth it.  I suffered from it from a very young age.  I think it was caused by both not having had much self confidence at all in my younger years, complicated by my body not having what antidepressants eventually were able to provide medically.

Edited by Linda Garren
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Doubleup    1

Thank you everyone for your kind words and Waruna for sharing your story. All your words help!

Just got the call my appointment with an MDS is not until December! Yikes that is a long way away... 

I DO have a a lot of Anxiety and just getting that date threw me off today and am extra shaky. 

I have been working out almost every day, running between 1.5 - 2.5 miles then about 30min of fast paced weights. I seem to have at least 1-2 "really low" energy days a week whereas working out or functioning normally in general is pretty much out of the question. I am working to push myself on those days and trying may different supplements for anxiety. Ashwaghnda did help me some with sleep... I feel it pushed my first "wake up" to about 3am now instead of 1am... So more experimentation needed.

I don't really know what more to say. My top complaints are tremors, sleep loss, low drive and energy.. Then anxiety and depression... The depression goes away when I "feel ok" so not super worried about that... Maybe if I could sleep better and reduce the anxiety I would have more energy and perhaps have reduced tremors...

I don't know what I have however it's all frustrating and waiting stinks.

I will continue my path toward reducing my anxiety, exercising and eating healthy until December and if I improve by then I can cancel or whatever is most appropriate. I guess I will have to pray for 2018 for a clearer path.

If I get really worried about a symptom I may post a question or two however I don't want to be labeled the member without PD asking how to fix PD problems... I am just working thru all this the best I can. Thank you for everything!

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otolorin    30

Post as many questions as you can.Remember you are not alone.Even if you have not been diagnosed,you share some common symptoms with people on this forum,so your questions are welcome.

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Doubleup    1
On 9/14/2017 at 3:22 PM, ellaangel2 said:

Miracleseeker - Thank you for the pep talk, but I was not writing about me, I was writing about anxiety in general and specifically to defend Doubleup's inquires and worries about her symptoms..........

Believe it or not people........."I am over it!"  Yes, I am!  I truly know now in my heart and soul that I do not have Parkinsons!  I could have bet my life savings that I had it......but, I can finally say I don't.  

I know a lot about PD, probably more than the average person that has PD, I "lived" it for many years.  Because I lived it for so long, I feel a bond to people that have PD, I seem to understand a lot of what they say and feel.  Sounds a little odd, doesn't it?  Well, I'm being honest.  I respect and admire people with this very misunderstood, challenging disease.

I don't write often, but I felt I could relate and help support Doubleup in her journey.

btw - If you all want me off of here, I'll be glad to go........I guess I really don't belong anymore, that is true.  Just say so, and I'll be on my way.......

Miracleseeker, how did you come to the final conclusion you don't have PD, Dat Scan or just enough time passed to heal you anxiety? 

I am nervious about the idea of a Dat Scan as it sounds like the most difinitave tool. Yet at same time am ready to move forward with acceptance this is all in my head or PD. 

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ellaangel2    191

Actually Doubleup, it's me;  "EllaAngel" that came to the conclusion that I don't have PD.  The reason is:  my symptoms started 8 years ago, none were visible, so of course, no diagnosis.  Out of the blue I started getting odd electrical type sensations all over my body, started to happen about every 4-5 minutes, then became even more frequent, about every 30 sec to 1 min. They stopped when I was sleeping.  To say this stressed me out is an understatement.  A neuro gave me every test imaginable, even a spinal tap.........all tests were ok.  Within a month or so, I developed an internal tremor in the calf of only one leg, it was not visible, but I felt it everyday, mostly upon awakening in the morning.  So.....I was absolutely convinced I had PD.  I went to 3 different MDS doctors, of course no diagnosis, no symptoms could be seen.  I had no slowness of movement and passed all tests related to that over a course of 2-3 years of repeat MDS visits.

I was put on Gabapentin, which was excellent for me, wiped out about 80% of these sensations, but not the tremor.

I was on Gab. for about 2 years, doctor said to wean off to see where I stood with the symptoms, well, lo and behold, they were 90% gone even without the Gab.

Tremor took much long to go away, maybe another year.  So, finally, after 8 years and no progression, and actually a decrease in symptoms, it really can't be PD.

As far as "mind over matter," I must disagree; that is not accurate in my case.  I was not anxious or stressed when symptoms started, as a matter of fact I was in a very good place in my life, retired, free of stress and having a relaxing day at the zoo when I got my first "bee sting" sensation.  As symptoms increased to every 30-60 seconds, around the clock, (until I was put on Gabapentin,) and I got no diagnosis, yes, my anxiety went through the roof. 

Therefore,  my symptoms stopped before my anxiety stopped.  My anxiety then stopped, after symptoms stopped.

To this day, I have no explanation to what caused these very odd and disturbing symptoms, and of course no explanation to why they stopped.

So once I saw that symptoms had subsided so drastically without the Gabapentin, and so much time had passed, I knew I didn't have PD and yes, I feel much better mentally now. 

I will never forget  that period in my life, I will never be the same person I was before all this started.  I say that for the good and the bad.  I have learned so much about PD and gained so much respect for people with PD.  I have learned to be grateful for all the tests that showed "normal."  Dr. thought I might have had MS.  I have also learned that once one goes deep in the "well" of depression & anxiety, it is very hard to come out, very hard.  So, I have much empathy for depression and anxiety.  I have also learned who my friends are, my real friends, some didn't make it through with me, but that's ok, this proves, they were never my "real" friends anyway.

I have also learned how vulnerable the human body is, we are basically "sitting ducks," for just about anything.  I will never take my body for granted again, it is nothing short of miraculous how intricate the body is.

 

Edited by ellaangel2

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Doubleup    1

Thank you EllaAngel and sorry for the mix up! 

Thank you so much for the long explanation some of it I can definetly relate to! I am surprised with all your testing that you never did a Dat or Pet scan... I guess somewhere in my twisted mind I am both convinced and scared that that is what I need to determine my true condition. 

Anxiety is very POWERFUL and I am finding my best days right now are when I somehow manage to curb it. I wish there was an easy answer for anxiety. As there are medications they all seem to be trial and error with potential withdrawal issues when come time to try to stop taking them. 

My tremors definetly increase with any anxiety or type of stimulant. I did try some wine (non drinker) and it really made me more "buzzed" not relaxed at all so didn't help tremors much. I don't think they got worse though. I guess next time if I try will need something with less sugar potentially...

Seems like my worst days start off and end:

Low Energy - Anxiety - Tremors - Depression - Apethy 

Good days:

Near Normal Energy - Exercise - More Clarity - Less Anxiety - Reduced Tremors

So regardless of what I have going on Anxiety is a huge trigger to a good or bad day. I have also read that dopamine is a trigger for anxiety when it is low. If you can boost dopamine anxiety diminishes quickly. 

One day at a time here. I am trying to read less about this and just eat healthy, exercise when I can and wait out this long process. 

 

 

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LAD    216

You may want to look in the young onset forum...there is a thread about anxiety...I posted some tips as my symptoms are triggered by anxiety 

 

 

 

LAD

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Linda Garren    752

Elllaangel, I am so happy to hear you are on the other side of a very difficult period in your life.  It is just such good news.  I know you really struggled.

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