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Doubleup

Not Diagnosed, However Need Advise

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Doubleup    1

My Story

I am 44yrs old and have not yet been officially been diagnosed with Parkinson’s yet however have been fighting Parkinson’s like symptoms over the past almost year now mostly since June. I was on Adderall until end of May this year for ADHD and feel its process was maybe masking Parkinson’s or also perhaps even somewhat creating it.

My symptoms in last November that I recall were digestive (constipation) with some low drive mild depression and just feeling off/tired even on the meds on certain days. I was advised to exercise and improve my diet and keep on the meds 5mg twice daily as I was prescribed Adderall for the past 1.5 years as well as a prior two year period toward 2005.

I began realizing I was feeling a reduced effect from the drug earlier this year and I realized I was getting tired in afternoons and drinking a lot of coffee to compensate (with little affect) as well as some digestion constipation problems. Toward end of May I quit Adderall completely including coffee and it has been very rough. Initially I didn't link the way I was feeling to quitting Adderall, I went to my primary doctor whom actually wanted me to stay on the drug however ordered a ton of labs and referred me to a GI. All of which tests came back without any findings... My Primary Doctor now understands and supports my choice to stop Adderall and just warned it may affect my work for a while and I will have my ADHD symptoms to deal with.

My symptoms since quitting Adderall were initially worse digestive constipation followed by some fatty stools., sleep loss (awake at 1-2am with difficulty after that), high frequency finger/hand tremors showed up a little later, anxiety, some depression, emotional, lowered libido and just an overall desire to do "nothing" even when I was thinking of all that I needed to do.

When I read about the neurotoxicity if the drug I am sickened that I did not research it's potential effects sooner. Many symptoms I have now are in alignment with Parkinson's however I am told it could take months for my body to adjust and tell me if it is Parkinson’s, withdraw symptoms or both.  

Today I have been doing a no wheat low carb diet and really watching my sugar. I have been more religious with my diet since then however still making adjustments. My blood pressure is low now and blood work looks the best it's ever been and all tumor and inflammation markers are low so I think my hard work is paying off.

Exercise is something that has been difficult to be consistent at. There are days I can barely get my kids to school and time just wisks by while I am feeling miserable then others where I can just throw on my shoes and go for a run and lift some weights. I am working on getting more consistent with this and hopefully improve or at least slow down whatever is going on. 
 

Managing my symptoms today:
The tremors are manageable for now as long as I avoid stress or coffee.

Hands and feet a little tingly at times however not bad. Muscle tightness on some days and none on others

Anxiety kicks in overdrive on some days and not on others.

My mental drive and energy are so up and down, seems I will sometimes get this 2-3 day burst of almost normalcy and then will just have a crash day where the thought of running a simple errand sounds like a funeral.

Apathy, Depression and Finding joy in things is somewhat sadly lost, I do things and observe things that make my kids happy and smile for them and say the right things, I just hardly “feel” it like I used to.

Sleep is probably the worst part right now. Melatonin helps get me to sleep, 5htp, magnesium, Theanne also in my evening supplement routine... However, I consistently awake near 1-2am and just somewhat rest with my eyes shut. Mind wandering sometimes other time just in like a half sleep state... Usually close to wake up time is when I finally feel like I could maybe get back to deep sleep. It's no fun. My Fitbit will register about 6.5-7hrs of sleep on a good day however some of that is just me laying still... 

I have been taking 5-htp which seems to slow the tremors some it seems and L-Tyrosine seemed to help balance energy a bit on some days; B vitamins Omega 3, Vitamin E, D CQ10 and multi vitamins which all do not give any direct noticeable effect.

Neurologists:

I have consulted two online video Neurologists that both said they do not feel my symptoms are Parkinson’s related, that this is more Anxiety related, however those were very impersonal and short.

I visited with another Neurologist in person at Sutter who basically said he doesn’t see Parkinson’s however I needed to get my Anxiety and Sleep issues under control before he could diagnose me further. That was not very helpful..

Then my local Neurologist spent a good hour with me. He was mystified with my symptoms. The only movement issue he was questioning was my left hand I was not quite as accurate at opening and closing it fast like my right. For my mood he wrote a script for Wellbutrin however I don’t feel good about taking it after reading many enhanced tremor side effects and the fact it also alters Dopamine function. I requested a movement specialist and maybe a DAT scan and he said all he could do was refer me to Stanford so now waiting for that…

This is all a process with a lot of waiting and taking one day at a time, praying this is mostly withdraw symptoms however 3+ months off the drug now and reading deeper into Parkinson’s many of my symptoms are early stage complaints. I may be a year away from the real movement symptoms or a true diagnosis. I must prepare for that if need be, in the meantime just doing the best I can with any advice you may have..

Edited by Doubleup

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swamper    59

Dear Doubleup:  Exercise!  Even if you don't feel like it, or especially if you don't feel like it, exercise!  That is the one thing that has been shown to slow progression of PD, and it is good for whatever ails you.  Cycling, boxing, have been shown to work.  But whatever you do, be sure to stick to it, and do it faithfully.  My best advice to you is that.  Good luck!  And keep fighting!

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otolorin    29

Hi Doubleup, your complaints resonates with me,I was diagnosed about a year and half ago,and probably been having some symptoms similar to yours,like anxiety,apathy,not enough sleep without realizing it is PD.My pry md attritubed all these symptoms to anxiety due to pre-existing mild mvp.I had to go through multiple neurologists within the span of  6months before i finally saw a motor specialist and got diagnosed.The waiting period sucks,I guess this is due to shortage in number of motor specialists.I think you are on the right path.Just keep waiting for your next appointment at stanford and try to exercise vigorously as much as you can.Exercise is vital.Good luck.

Edited by otolorin

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Doubleup    1

Thank you both for the needed encouragement for exercise! And thank you Otolorin for relating to my doctor frustrations...

I will work to exercise fighting thru my down days and at worst get some short sweats in even when I'm in a crash. Lately I feel like my muscles do not recover as quickly as they used to. Is this maybe a portion of the muscle stiffness from PD or just possibly I am still just more out of shape from these past few months of lower activity? Also tremors are increased right after workouts is this common for you?

I am typically a physically active person that used to work out a lot and my job also requires physical activity so I have that going for me in tackling this part at least. 

Edited by Doubleup

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swamper    59

Yes, my tremor increases with exercise, and also the muscle stiffness is difficult.  I have always been very active, and find the limitations on my activity very frustrating, but I am convinced that I would be in much worse shape if I did not do my Rock Steady boxing or my gym workouts.  And my mental health would be a whole lot worse as well. So keep fighting! 

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Doubleup    1

Thank you Swamper.

Any advise for sleep besides melatonin? I've tried a lot of over the counter combinations with pretty much the same 1-2am awakening effect...  I guess if I dig in other forums I can find info on this also; for now I am just trying to figure this all out while I wait for the next Doc.

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swamper    59

I am not the best person to advise about sleep.  I am retired, and so do not have to function very well during the daytime.  That said, I take 50 mg

trazodone at bedtime (have for years), and I go to sleep promptly most nights, at about midnight.  I wake most mornings about 6 am, and that is it for the day. 

I rarely take a nap, which saddens me, as before PD that was one of my greatest -pleasures.  But such is life, and I figure I am doing as well as can be expected, with just six hour of sleep.

If I take the trazodone any earlier than 11 pm, I am up at 4 or 5, so the six hours seems to be all that I need.  Retirement is a blessing! 

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LAD    215

Exercise is just as important as any meds! It's one thing everyone agrees is beneficial for PD! I was prescribed an anti depressant for anxiety and sleep. I do sleep better now. I also do relaxation exercises in bed....breathing and yoga type music. 

Hopefully you will see an MDS and get things sorted out. 

 

LAD

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DaveN    428

Double up,

Do your tremors effect both hands? My best advice is to stop thinking about what you may or may not have. Dr. Google is only going to enhance your anxiety and from there you might wonder if your symptoms are real or physcosymatic. Start an excercise program and live your life. Let the doctor do his job when you have your appointment.

Dave

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otolorin    29

Double up, Swamper is right,exercise will amplify the tremor and stiffness temporarily,as per sleeping,avoid CNS stimulants like caffeine close to bed time and make sure you relax well.Try not to exercise close to your bed time.I take melatonin as well,magnesium and alprazolam for anxiety at night and I get some good sleep.I have a demanding job too,but while I was working,I did not feel like I was active enough compared to when I actually created time for exercise.So you really have to find time for the exercises.

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waruna01    51

You might want to try thripala at night to help with digestion. Ashwaghnda might give you energy boost. Very safe herbs to to try.

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waruna01    51
  1. One word of advice for you is you can't diagnose Parkinson's properly when you think you already have Parkinson's. Your body will mimic Parkinson's like symptoms once the thought and fear of Parkinson's enters your mind. Parkinson's is best diagnosed when you don't believe you have Parkinson's and only your doctor think you have Parkinson's. Also, if you still have your sense of smell, I.e you can smell a banana or coffee, I would rule out Parkinson's myself and live your life until your sense of smell is completely gone. This is the easiest way to rule out Parkinson's. Tremors and other PD symptoms usually appear years after losing smell which is one of the prime early indicators of PD. Your prescription meds might also be partly to blame so try to wean them off and try something herbal and natural. There is absolutely no benefit in diagnosing Parkinson's early. It will make your health insurance premiums go up, life insurance rates to go up, change family dynamic wit your spouse,kids, friends and family. So please do your self a favor and stop chasing Parkinson's if you can still smell a banana, coffee, even a little. Worry about Parkinson's after you can't smell anything at all. Do regular exercise. Keep stress levels down. Tripala, shayankapushpi, Ashwaghnda are good herbs to try regardless if if you have PD or not. They are healthy on brain cells. Remember, there is absolutely no benefit in diagnosing Parkinson's early.
Edited by waruna01
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waruna01    51
On 9/9/2017 at 2:55 AM, Doubleup said:

Thank you Swamper.

Any advise for sleep besides melatonin? I've tried a lot of over the counter combinations with pretty much the same 1-2am awakening effect...  I guess if I dig in other forums I can find info on this also; for now I am just trying to figure this all out while I wait for the next Doc.

Melatonin and other sleeping aide will worsen sleep. What you may need is a long vacation preferably out of country to recapture your normal sleeping rythem. You probably under too much stress from thinking you already have PD and it will worsen sleep. Ashwaghnda is also good for sleep and healthy for brain cells

Edited by waruna01
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Doubleup    1

Thank you for all the advise on sleep and self diagnosis. I have read a little on Ashwaghnda and have ordered some to try. My goal is no meds if possible, natural remedies like this moving forward unless I just cannot cope. I don't drink coffee as it makes Tremors worse and will never touch ADHD meds again. 

As for my self diagnosis and Dr Google. Trust me I have been told this by my Doctor and have taken good breaks from reading a single thing about anything. It absolutely does help my anxiety when I do that however I still have the tremors and sleep loss and will maybe go 2-3 days feeling "almost normal" besides slight cognitive impairment, depression and slower moving; then will have a bad energy crash with major anxiety. I feel like this stage of what I am going thru has waves, there are just some days I can barely do anything others almost ok... Which provokes me back to research and calling my doctor.

I have been to a lot of appointments to my Primary, GI, Psychologist and even an Oncologist. On top of my other distracting symptoms I originally noticed tremors only when nervous or concentrating awhile back however did just think anxiety. Once they showed up pretty much 24/7 I requested Neurology which is what I should have started with besides maybe a psychiatrist. If I am barking up the wrong tree I genuinely appreciate every word you all give me. I have learned so much about Parkinson's if I end up without a diagnosis I will surely be a lifelong fan of the fight to cure it! 

I heard from my Neurologist late Friday and the referral was sent to Stanford so I will need to call tomorrow and see how long the wait will be and will surely report back. Thanks again everyone.

 

 

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DaveN    428

Double up,

You keep saying you have tremors but have yet to describe where they are. A lot of diseases and conditions have tremors. It would be helpful to all to better describe what you are experiencing. Parkinson's tremors are not high frequency. Do you have them at rest or when you're doing something?

On 9/8/2017 at 1:54 PM, Doubleup said:

My symptoms since quitting Adderall .....  high frequency finger/hand tremors showed up a little later, anxiety, some depression, emotional, lowered libido and just an overall desire to do "nothing" even when I was thinking of all that I needed to do.

Thanks.

Dave

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waruna01    51
16 hours ago, Doubleup said:

Thank you for all the advise on sleep and self diagnosis. I have read a little on Ashwaghnda and have ordered some to try. My goal is no meds if possible, natural remedies like this moving forward unless I just cannot cope. I don't drink coffee as it makes Tremors worse and will never touch ADHD meds again. 

As for my self diagnosis and Dr Google. Trust me I have been told this by my Doctor and have taken good breaks from reading a single thing about anything. It absolutely does help my anxiety when I do that however I still have the tremors and sleep loss and will maybe go 2-3 days feeling "almost normal" besides slight cognitive impairment, depression and slower moving; then will have a bad energy crash with major anxiety. I feel like this stage of what I am going thru has waves, there are just some days I can barely do anything others almost ok... Which provokes me back to research and calling my doctor.

I have been to a lot of appointments to my Primary, GI, Psychologist and even an Oncologist. On top of my other distracting symptoms I originally noticed tremors only when nervous or concentrating awhile back however did just think anxiety. Once they showed up pretty much 24/7 I requested Neurology which is what I should have started with besides maybe a psychiatrist. If I am barking up the wrong tree I genuinely appreciate every word you all give me. I have learned so much about Parkinson's if I end up without a diagnosis I will surely be a lifelong fan of the fight to cure it! 

I heard from my Neurologist late Friday and the referral was sent to Stanford so I will need to call tomorrow and see how long the wait will be and will surely report back. Thanks again everyone.

 

 

If you still have your smell, forgot all this PD nonsense, reading this forum and chasing Stanford doctors, go live your life. Find a passion, help others to occupy time. All this anxiety issues will go away then. More you keep reading stuff in this PD forum, more you will think that you will get PD. I would not come here If I were you. You don't have Parkinson's and will likely never get it. Save your $$$ from going after doctors and donate it for a charity or something 

Edited by waruna01
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Doubleup    1

Waruna01, I pray you are correct. I actually I am not reading much anymore. I have done enough of that and at this point I just need to take it a day at a time and listen to my doctors.

Since I was on Adderall which highly stimulates Dopamine to much higher than normal levels for ADD and ADHD it is highly possible being off that medication has led to more of "Parkinsonism" vs specific Parkinson's disease symptoms. 

It is also possible that I was already prone to Parkinson's prior to meds and these meds boosting Dopamine output masked some of the symptoms until I quit taking it. I also feel the Meds likely had some neuortoxic affects as well as depleting my dopamine storage which would explain my afternoon "nodding off" while driving episodes. I have been taking Thyrosine for a few weeks now and feel a slight afternoon alertness improvement. I considered mucuna pruriens however that seems to be jumping ahead a little too fast. 

My tremors while are mostly high frequency do occur at rest and in both hands. These may be essential tremors, I then have individual individual finger movement that randomly occurs at various times in mostly my left hand. The tremors seem to intensify if I am concentrating or feeling anxious. My left hand/forearm is very "tingly" for lack of a better explanation and I have some slight diminished speed and use of it. My muscle tightness comes and goes in various limbs however right now in my left is very present.

Beyond that most of my symptoms affected are some Depression, Apathy, Cognitive Impairment, Sleep Loss, and Anxiety. I can get to sleep however by 1am I am typically restless the remainder of the time.

My sense of smell is still here however something like pickles I need to put my nose in the jar whereas I do feel I could smell as soon as I opened the lid before. Coffee I don't really smell it brewing, however if I grab the bag I can smell the beans.

Many diagnosed with PD have reported having essential tremors in years prior as well as Depression, Apathy, Sleep Loss, and Anxiety. These are all common pre PD symptoms, mine maybe too many all at once or not consistent with typical progression however I have to take into account that I was on this bad medication that likely altered some things an thus my symptoms and diagnosis will be a little different than others. I was also treated for depression in 2005

Maybe you are right and that would be welcome outcome however after over 3 months being off these Meds while exercising, eating very healthy and taking healthy supplements I would have suspected at least a couple symptoms improving. Each day is a struggle and until I actually know what I am dealing with I don't want to just accept the next prescription for a quick fix that may reduce a better balanced healthy treatment later with more educated diagnosis and information. 

With PD or not I am not here to waist anyone's time and I pray for healing for all. 

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pdmanaz    49
On 09/11/2017 at 1:27 AM, waruna01 said:

If you still have your smell, forgot all this PD nonsense, reading this forum and chasing Stanford doctors, go live your life. Find a passion, help others to occupy time. All this anxiety issues will go away then. More you keep reading stuff in this PD forum, more you will think that you will get PD. I would not come here If I were you. You don't have Parkinson's and will likely never get it. Save your $$$ from going after doctors and donate it for a charity or something 

OMG LOL

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stump    463
On 9/10/2017 at 11:27 PM, waruna01 said:

If you still have your smell, forgot all this PD nonsense, reading this forum and chasing Stanford doctors, go live your life. Find a passion, help others to occupy time. All this anxiety issues will go away then. More you keep reading stuff in this PD forum, more you will think that you will get PD. I would not come here If I were you. You don't have Parkinson's and will likely never get it. Save your $$$ from going after doctors and donate it for a charity or something 

21 minutes ago, pdmanaz said:

OMG LOL

 

While I've had my disagreements with pdmanaz over politics, I'm in agreement with him on this one.

 

Loss of sense of smell is a common issue with PWP's but it's hardly universal, nor is the extent of loss of smell anywhere near the same for everyone.  I can still smell coffee and bananas, just not very well.  Cholorine has to be very strong for me to notice it.  Dirty diapers, rotten meat, sour milk also have to be especially strong for me to smell it.  But I can still smell those things.  Interestingly, ammonia is something I can smell better than most people.

 

Anyway, you might have PD, but you also might not.  Overall probably better odds for not having it than that you do.  But losing your sense of smell is not the prime determinant by a very long shot.

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DaveN    428

Double up,

Your afternoon sleepiness is most likely a result of not getting a good nights sleep.  I doubt that Adderall is causing your symptoms. It's not uncommon for an MDS to prescribe it to someone with PD to combat extreme fatigue.  Your sleep issues are probably contributing to all or some of your issues. You should consider seeing a sleep specialist to get a handle on that. 

Waran is incorrect about loss of sense of smell.  It's true that most PD patients have loss of sense of smell but it's not uncommon to not have the problem. I personally do not have complete loss of sense of smell, mine is highly diminished. I'd love to be able some a flower again. Parkinson's can be cruel sometimes.

We want to help and no you're not wasting anyone's time. I doubt that you have Parkinson's. You need to beware when talking to other members. Some took a while to get diagnosed and therefore assume that everyone else is experiencing the same doubts from the medical community that they endured. Nobody can hide from this dam disease as it is progressive and will eventually rear its ugly head.

Don't let your fears of the unknown consume your thoughts. Live your life like there is no tomorrow. You could easily get run over by a bus and then where would you be? 

Dave

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Doubleup    1

Thanks for the clarity in the smelling, now I don't have to go around the house sniffing everything ;) 

Dave, my afternoon tiredness was while still taking my Addreall 4+ months ago. And my coffee consumption I was increasing with zero effect... This all made me nervous and decided to quit both. Also while on the medication I slept great. Since the day I stopped I have not slept well once. 

Doctors just wanted me to increase my dosage, at this point I only want herbal remedies unless I have no choice... Most Doctors love to write scripts collect their money and push you out the door for a few more months.

I could simply be suffering multiple symptoms from my body adjusting to being without this medication there are a lot of similarities however more than likely time will me the only truth. 

Living a day at a time as you said and trying to make the most of it. I just feel awful many days and need to get past that somehow... I won't give up!

 

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waruna01    51
3 hours ago, Doubleup said:

Thanks for the clarity in the smelling, now I don't have to go around the house sniffing everything ;) 

Dave, my afternoon tiredness was while still taking my Addreall 4+ months ago. And my coffee consumption I was increasing with zero effect... This all made me nervous and decided to quit both. Also while on the medication I slept great. Since the day I stopped I have not slept well once. 

Doctors just wanted me to increase my dosage, at this point I only want herbal remedies unless I have no choice... Most Doctors love to write scripts collect their money and push you out the door for a few more months.

I could simply be suffering multiple symptoms from my body adjusting to being without this medication there are a lot of similarities however more than likely time will me the only truth. 

Living a day at a time as you said and trying to make the most of it. I just feel awful many days and need to get past that somehow... I won't give up!

 

What you need is a very long vacation.

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Doubleup    1

First I would have to look at my goals and priorities and find a way to let go of some major stressors in my life that I should likely let go of anyway. Problem is making a living doesn't always come easy.

Medication wise I may be more inclined to try an antidepressant with PD vs. some syndrome that may balance itself out naturally with time. Just sticking with Herbal  advise for now.

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ellaangel2    189

When someone is worried about having unexplained, undiagnosed symptoms, talking to them in a minimizing manner does not help them at all.  It is very frustrating to get this kind of feed back from a "support" group.  What kind of "support" are you offering??  Your unfounded advice and opinions are just adding to their frustrations.

A diagnosis may have come quickly or easily for some; probably because you didn't go to the Dr. right away when noticing symptoms or it didn't dawn on you that symptoms could be something serious.  This is not the case for others.  Some people are instinctually more aware of their bodies and some are more proactive in seeking medical care.

I am not saying that Doubleup has Parkinson's, but the fact that she is seeking medical advice about some concerning symptoms is to be admired and to come to a "support" group and get no "support" is not appropriate at all.  Having to make a person defend what they are feeling is just plain wrong.  Would you like to have to defend your feelings?

Obviously she feels concerned enough about her symptoms to seek help and support, why not give her some, instead of discounting her symptoms.

Doubleup is in a very stressful, anxiety ridden place right now, how about giving some "real" support.

I support you Doubleup, I've been there, it is no fun at all.  As a matter of fact, it is horrible to be experiencing symptoms and not getting answers.

 

btw - just fyi members, It is a fact that loss of sense of smell is not "across the board" in Parkinsons.

Edited by ellaangel2
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