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26 year old with questions!


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#1 Bren128

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Posted 05 January 2013 - 01:14 AM

My doctors believe I may have parkinsons but after seeing three of them, and taking a blood test for the mutated gene which was negative the best one I saw said: Were calling it parkinsons for now but were not sure. I have been posting on here for months while my symptoms continue to worsen. I took Sine met for two weeks it didn't help at all,im on artane which helps the bradykinisia in my fingers and loosens my arm.

As of now, I cannot flex my muscles at all in my left arm. I can barely flex them in my other ligaments. 6 months ago all I had was slowness in my fingers. So this has progressed rapidly. My libido is gone now and my left testicle at times is 1/3 the size it should be. HAS ANYONE had anything like this? Im also having rapid heart beat for no reason and major circulation problems. Im going back to the doc thursday bc i called my doctors and told them of the muscle issue, she seemed concerned but didnt have an answer for me.

My major concern now is muscles not flexing, nobody will give me a straight answer on this. This is the best place to ask! Thank you all, this is a video i made on youtube a few months ago, My symptoms were not nearly as bad then:



#2 KimAgain

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Posted 05 January 2013 - 09:23 AM

Your video broke my heart. Now, for the record, I fall into the category of old people you were referring to, BUT... Age changes nothing when it comes to fear of the unknown, fear of what you might have and fear of where it might take you. That said, I vividly remember attending a support group when I was first diagnosed and, finding myself thinking, "clearly, I do not have the same disease as these people--because these people are all so... so... old!"

The fact is, this disease is not referred to as a "snowflake disease" for nothing--no matter your age, or how the disease presents or progresses--because we all respond to the disease differently, both in terms of symptoms/progression and treatment/response we all, essentially, have a different disease! A sort of personalized disease if you will.

But, how does this help you? Well, hopefully, it will give you a little knowledge that may help to put things into perspective: Younger Onset patients do perhaps have a different presentation of symptoms and, quite likely, have a greater chance of compensating for those symptoms because they are younger--and may be stronger and more readily able to adapt. But, as far as the struggle many Young Onset patients have getting a diagnosis? Well, because we are all "snowflakes," our symptoms often differ markedly and this, in turn, frequently confounds our doctors and defies diagnosis for quite some time.

This site, I have noticed, has some very bright, very candid younger-than-me contributors who will, I am sure, reach out soon. In the meantime, I see you have muscle "stiffness," but do you have any other symptoms? Start fishing your symptoms on this site asking the younger crowd to respond--they will, I'm sure.

In closing, one BIG advantage to being "old" is that you are often older than your doctor, so you don't treat them like deity anymore (I once told my doctor that I had food in my refrigerator that way older than he was!!) and, frankly, they tend, as a result, to listen more carefully and take your concerns a little more seriously. So, my advise would be, don't go to the doctor without a written list of concerns and never, ever leave until the doctor has addressed every last thing on the list.

I cannot say if you have Parkinson's or not, but clearly something is amiss--don't give up until you nail down an answer--sadly. there are lots of good (young) people on this site who may be able to help.
Good Luck,
Kim

Edited by KimAgain, 05 January 2013 - 09:25 AM.


#3 KimAgain

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Posted 05 January 2013 - 09:30 AM

Oh, in re-reading, I guess you do have other symptoms. I have no reference point for the testicle thing, but the rapid heartbeat thing could be an anxiety based issue. I had that a lot before I was treated for PD related anxiety.

#4 christie

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Posted 05 January 2013 - 11:06 AM

Great advice from Kim...again...

If i may add a few things to help you...

Bren, you have certainly come to the right place for support and advice.
Given your young age, the negative genetic testing AND the absence of adequate response to levodopa, it is possible you don't actually have Parkinson's. In your case, i think that a Datscan is stongly warranted! you could also seek another doctor's opinion, from an experienced MDS.

We are no neurologists, of course...My humble opinion, is that your muscles may not flex due to rigidity. i can barely flex my right wrist due to severe rigidity. (i have young onset PD-i am 37, diagnosed 2 years ago). That doesn't mean of course that you have PD! BTW, have your doctors excluded dystonia ? Dystonia can cause abnormal posturing-such as the symptoms you describe-and can mimic almost to perfection young onset Parkinson's. Dystonia is a non-degenerative neurological disorder, with a much better prognosis as compared to PD.

As regards your progression, don't get alarmed, there is data that Parkinson's-as well as dystonia!- may progress more rapidly at the initial stages. Progression may stabilize a little later on. Good news is the younger you are, the slower the progression (that is IF you have YOPD).

Your rapid heart rate could be another symptom of your neurological problem, but not necessarily. make sure you discuss all these issues with your doctor.
Be positive and hang around with us...
Keep us posted !

Edited by christie, 05 January 2013 - 12:25 PM.

English is not my first language !

#5 Bren128

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Posted 05 January 2013 - 01:44 PM

Thank you both for your advice! Kim you don't look old at all! Most of the people I see with the disease seem to be in there 80's, I feel out of place in the nueros office. I dont fit the typical bill for parkinsons although I do have stiffness and bradykinisia in my arm and left fingers. I have an AWFUL essential tremor especially when I get upset. My hands do not shake at rest. Sine Met should have helped, it did not. The only thing that has helped is artane but im having bad side effects from it. Christie they have not ruled out Dystonia either. Too go along with not being able to flex my muscles my muscles are deteriorating in mass.

My left arm muscle will not flex at all with or without the Artane. Im actually very positive about all of this but with a full timte job, school full time, and getting ready to marry my fiance in June, which while I am looking forward to it, It breaks my heart to think shell have to deal with what I have. I am stressed to the max. Stress makes me shake badly.

Thanks for all your advice!

#6 Mihai

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Posted 05 January 2013 - 02:44 PM

Hi Bren128,

You've already received some great advice from some very knowledgable people. I was dx at 33 years of age with YOPD (I'm 44 now). It does tend to have a much slower progression in younger onset (as compared to older onset). My first symptom was weakness in my left hand (poverty of movement) and rigidity. Things have gotten worse in the past several years; however, the progression overall has been slow. I still work full-time, I still drive, I still do most everything I want to do. Medication is a lifeline and keeps me moving. I'd be in serious trouble without it.

I agree with Christie...your symptoms are not necessarily consistent with PD. I am especially of that mindset given the fact that Sinemet did nothing for your symptoms. For years, PD has been diagnosed based all on rule-outs (of other potential conditions) and a trial of medication (almost always Sinemet, the "gold standard" drug in PD treatment). That's how I was diagnosed. I've always heard that if Sinemet does not address the issues, it's probably not PD. Christie gave you some good advice. Get a second and third opinion and bring up some of these other conditions (such as dystonia, etc...). You may be surprised to find that you don't have PD at all!

Above all else, keep strong in your faith and keep trusting God (as you said in your video)...that will be your best source of comfort and encouragement in this time of "unknown"...

We are here to help and support you. Let us know what we can do to help. My prayers are with you...something is happening in your body...and I will pray that someone can give you an accurate diagnosis of what that is.

Peace and blessings,
Mihai (Michael)

#7 RNwithPD

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Posted 06 January 2013 - 05:20 AM

Bren128,

The loss of libido and testicular atrophy tend to point away from PD and more towards an endocrine (glandular) problem. Perhaps going to see an endocrinologist and having your hormone levels checked might reveal some new information. Have you had your testosterone level checked? It's a simple blood test that could reveal the cause your loss of libido and muscular atrophy. Hormones - especially the steroids - also help regulate heart rate and every other body system. I would keep pushing for answers if I were you.

Sincerely,

Kevin

#8 christie

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Posted 06 January 2013 - 05:44 AM

Bren128,

The loss of libido and testicular atrophy tend to point away from PD and more towards an endocrine (glandular) problem. Perhaps going to see an endocrinologist and having your hormone levels checked might reveal some new information. Have you had your testosterone level checked? It's a simple blood test that could reveal the cause your loss of libido and muscular atrophy. Hormones - especially the steroids - also help regulate heart rate and every other body system. I would keep pushing for answers if I were you.

Sincerely,

Kevin


Great point from Kevin. BUT, Bren described a unilateral testicular atrophy (or at least something that looks like atrophy to him, he may be wrong). A systematic (hormonal) cause would most likely cause bilateral involvement, but no one can know for sure.

Bren, are you on ANY medications (including nutritional/sports supplements, vitamins etc) aside from those prescribed for your neurological issues ? I was also wondering if you have had an EMG test.

PS : Congratulations for your upcoming wedding!!!And try not to overstress yourself with your health issues, you will see that once you have a final diagnosis, everything will work out just fine for you.
English is not my first language !

#9 Bren128

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Posted 06 January 2013 - 03:11 PM

Great point from Kevin. BUT, Bren described a unilateral testicular atrophy (or at least something that looks like atrophy to him, he may be wrong). A systematic (hormonal) cause would most likely cause bilateral involvement, but no one can know for sure.

Bren, are you on ANY medications (including nutritional/sports supplements, vitamins etc) aside from those prescribed for your neurological issues ? I was also wondering if you have had an EMG test.

PS : Congratulations for your upcoming wedding!!!And try not to overstress yourself with your health issues, you will see that once you have a final diagnosis, everything will work out just fine for you.


Im on doxycline , for my acne. Thats it. Have any of you had an issue with being able to flex your muscles? I did have an EMG, and an mri on my spine/brain. Negative. I also had my thyroid and prolactin levels tested. Thank you Christie I'm very excited too get married!

#10 Bren128

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Posted 06 January 2013 - 03:14 PM

Bren128,

The loss of libido and testicular atrophy tend to point away from PD and more towards an endocrine (glandular) problem. Perhaps going to see an endocrinologist and having your hormone levels checked might reveal some new information. Have you had your testosterone level checked? It's a simple blood test that could reveal the cause your loss of libido and muscular atrophy. Hormones - especially the steroids - also help regulate heart rate and every other body system. I would keep pushing for answers if I were you.

Sincerely,

Kevin



I believe theyll want me to get my testerone levels checked on Thursday. I am also considering a Dat Scan but heard it was expensive ( I do have insurance). I def feel that the testosterone levels should be checked. Thank you for the advice!

#11 Bren128

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Posted 06 January 2013 - 03:16 PM

Hi Bren128,

You've already received some great advice from some very knowledgable people. I was dx at 33 years of age with YOPD (I'm 44 now). It does tend to have a much slower progression in younger onset (as compared to older onset). My first symptom was weakness in my left hand (poverty of movement) and rigidity. Things have gotten worse in the past several years; however, the progression overall has been slow. I still work full-time, I still drive, I still do most everything I want to do. Medication is a lifeline and keeps me moving. I'd be in serious trouble without it.

I agree with Christie...your symptoms are not necessarily consistent with PD. I am especially of that mindset given the fact that Sinemet did nothing for your symptoms. For years, PD has been diagnosed based all on rule-outs (of other potential conditions) and a trial of medication (almost always Sinemet, the "gold standard" drug in PD treatment). That's how I was diagnosed. I've always heard that if Sinemet does not address the issues, it's probably not PD. Christie gave you some good advice. Get a second and third opinion and bring up some of these other conditions (such as dystonia, etc...). You may be surprised to find that you don't have PD at all!

Above all else, keep strong in your faith and keep trusting God (as you said in your video)...that will be your best source of comfort and encouragement in this time of "unknown"...

We are here to help and support you. Let us know what we can do to help. My prayers are with you...something is happening in your body...and I will pray that someone can give you an accurate diagnosis of what that is.

Peace and blessings,
Mihai (Michael)


Michael,

It sounds slike your doing better than I am! I keep praying and I stay positive, I have to! The Sinemet not working is one of the main reasons I question it! Thank you!

#12 christie

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Posted 06 January 2013 - 10:01 PM

Have any of you had an issue with being able to flex your muscles? I did have an EMG, and an mri on my spine/brain. Negative. I also had my thyroid and prolactin levels tested. Thank you Christie I'm very excited too get married!


First, your negative MRI and EMG are great news ! All the "bad guys" are out of the picture, so to speak ! LOL! that's also a good reason to reduce your stress levels...

Second, as i said before-see one of my previous posts-your muscles may not flex due to rigidity. Rigidity may affect not only the passive but also the active range of motion. I can barely flex at all my affected right wrist. On the other hand, muscle rigidity does not necessarily point to Parkinson's.
English is not my first language !

#13 she-ra

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Posted 07 January 2013 - 07:59 AM

The doxycycline might be a red flag so be sure to mention that to the dr. when you go. Let us know how it goes.
Sheila ^_^

#14 Bren128

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Posted 11 January 2013 - 11:28 PM

Thank you for responding. The doctors still dont know for sure, they said I was a ''puzzle''. Im going to start this agonist called Amantadine. She is also sending me free trials of a neuro patch. Although Artane helps me it just has too many bad side effects. At this point, after being positive for almost 9 months, my spirit is almost as broken as my body is becoming. I got my bill for the mutated gene test I took, 12,061.74 No way I can pay that. Not knowing what I have is really getting to me. Working full time and going to school full time adds stress. This support forum does boost my spirit, and I thank you all for responding. Oh I did have my testosterone tested today, should have results next week.

#15 christie

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Posted 12 January 2013 - 08:00 AM

Bren, try keep your spirits up, don't despair, this is just a tough phase, it will pass.
Amantadine is not a dopamine agonist. the neupro patch is the dopamine agonist rotigotine.
English is not my first language !

#16 Bren128

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Posted 12 January 2013 - 11:19 AM

Bren, try keep your spirits up, don't despair, this is just a tough phase, it will pass.
Amantadine is not a dopamine agonist. the neupro patch is the dopamine agonist rotigotine.


Hmm she said the Amantadine was like an agonist, wonder why she said that and prescribed it? I start it tomorrow im my day off I will update! Thank you!

#17 KimAgain

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Posted 12 January 2013 - 09:23 PM

Bren Dear,

Would that I could take your fears and worries away, soothe your anxieties, ease your troubled mind... but, there are no words I can offer that will calm the rough waters your emotional ship is bobbing around in right now. I cannot even tell you that I know how you feel, for truly, do any of us ever really know how someone else feels? All I can offer is this...

Some of life's trials are pea-sized--tiny little things we consume easily and without much fanfare. Then, there are the big, big things--things we have no taste for and yet are forced to face and consume anyway. These are the life changing issues, the elephant-sized problems that are served up to us whether we have an appetite for them or not. The question is, how does one eat an elephant?

The answer: One bite at a time.

I know it's hard, but try not to focus on the whole elephant, just the bite you are working on right now. Is this denial? Sure. But, one way or another, you have an elephant to eat, so why choke yourself trying to consume it in one go? Facing the whole elephant at once is not only overwhelming, it can be downright terrifying and altogether too much to face. So take a deep, deep breath and focus your full attention on chewing over the mouthful you have to eat right now.

I'm so, so sorry I have nothing better to give, nothing more helpful to offer, but I feel very confident that if you keep on sharing with the good people on this forum, you'll find a way to eat the elephant you face.

Best regards,
Kim

#18 Island Woman

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Posted 12 January 2013 - 09:54 PM

well said Kim...baby steps...small bites...what ever...Bren just take it slow...deep breath...we are all with you

Patricia

#19 Mihai

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Posted 12 January 2013 - 10:46 PM

I like your advice Kim...very interesting (and applicable) analogy!

Sometimes, getting an actual diagnosis is a relief compared to the ongoing evaluation and limbo of the unknown. At least then there is a name to put with the changes taking place in the body. Then you can begin the "now what?" stage and begin to develop a practical strategy for treatment and continuing on with life.

I'm sure you are emotionally exhausted...lean on and use the supports you have...family, friends, your girlfriend, this forum, your faith, etc... You will get through this with the support of those that love and care about you.

We care and we are here...keep encouraged, friend!

Hugs,

Michael

#20 christie

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Posted 13 January 2013 - 08:34 AM

A final diagnosis is always a relief. But, again, we should never forget that ANY negative test is ALWAYS good news.
Negative brain MRI (excluding brain tumors, multiple sclerosis, vascular-often inoperable-lesions...).
Negative EMG (excluding peripheral neuropathy, and most importantly, amyotrophic lateral sclerosis-ALS-a horrible and uniformly fatal disease)
Negative blood tests for a bunch of life-threatening diseases
Negative Datscan imaging (excluding Parkinson's disease in most cases, or at least suggesting a very slow progression and improved prognosis)

who wants a diagnosis when he can have a LIFE ?

Edited by christie, 13 January 2013 - 08:35 AM.

English is not my first language !




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