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Parkinson's Diagnosis


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#1 Daven

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Posted 07 May 2013 - 07:44 PM

Well, I had my appointment today with the new Movement Disorder Specialist. What a difference it makes when the doctor and his staff spend time with you to properly determine what ails you. My previous doctor spent 5 maybe 10 minutes tops with me, whereas my new doctor and the fellowship doctor spent 3 hours examining and testing me. They concluded that I do in fact have Parkinson's Disease. He suggested I could do a DaTscan if I wanted to, but in his opinion it would be a waste of money and would only tell us what he already new. He's starting me out on 1mg of Azilect once a day. He wants to start me on this cause it should be easier on my system. I already take a lot of prescription medications throughout the day. He explained that I'll need to be patient cause it'll take time to get the medicine(s) right.

For those that say I should at least do a trial with Sinemet to confirm the diagnosis, he said that wouldn't be necessary cause there is no doubt in his mind what my problem is.

I was really hoping that all this crap was in my head, well technically it is, and it would just go away on its own. I'm little bummed and realize it'll take some time to completely wrap my head around all of this. If anyone has any advice on this new prescription I'll be taking, I'm all ears.

Dave

#2 joy h

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Posted 07 May 2013 - 08:42 PM

Dave foe me having a accurate diagnosis was better then being miss diagnosed and passed around like a football. i also suggest you find a Parkinson support group and start exercising. Sending you a hug. looks like you have a good dr
have a blessed day
joy

#3 Daven

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Posted 07 May 2013 - 09:23 PM

Thank you Joy. You are correct, having a diagnosis is much better than living in limbo land. Exercise is not a problem, I walk 2 1/2 miles on the treadmill every day and if weather is permitting another 2 1/2 miles with my wife through our neighborhood. My Doctor was a little surprised considering I have permanent drop foot in my right foot.

Dave

#4 dgray001

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Posted 08 May 2013 - 07:32 AM

I was recently diagnosed as well. I haven't been to a MDS, but went to a highly recommended neurologist who specializes in PD. He spent a great deal of time with me, explaining everything in terms I could understand. Most of it I already knew, as my Dad had PD for many years. My family doctor refused to diagnose me as having PD, because i'm young, but I knew I had the symptoms. I just hoped I was wrong. It was very upsetting to finally get the diagnosis and I cried, still a little bummed. Your doc is right, its challenging to get the right combo of meds, I'm still trying to adjust to new meds I was recently put on. Keep on keepin on the best you can. My doc was surprised that I ride horses :-)

#5 LarryH0123

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Posted 09 May 2013 - 10:20 AM

Aloha Dave,

I also started on Azilect 1 mg. and am still taking it. I had no adverse side effects at all from that one. I am now on Rotigotine, Neupro patch 8 mg. in addition to the Azilect. I have had some nausea and dizziness with each increase in dosage of the Rotigotine but my body adusts in one to two weeks.

#6 Daven

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Posted 09 May 2013 - 11:59 AM

Thanks for the response Larry. I was beginning to think that I was invisible. I'm hoping the Azilect will help with my daytime fatigue.

My doctor also suggested I take Melatonin to treat my sleep issues that I wasn't aware of or ignoring. It seems waking up and finding yourself sitting on the side of your bed is a form of acting out your dreams. Now that I know what it is, It concerns me that this happening. The initial dose of 3mg wasn't very helpful last night. Every time my wife rolled me over for snoring, I started getting out of bed. I have no knowledge of this happening. Normally, I wake up very refreshed in the morning, but today I felt hungover. Anyone else have this effect with Melatonin or do I just need to be patient and bump up the dose until its effective.

Dave

#7 Mandy Neagles

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Posted 09 May 2013 - 04:33 PM

My doctor, as well, will not diagnose me with PD yet. It has been 10 years! However, he did have me go on a very high dose of melatonin, 10 mg/night, which helped. For some reason though he recently switched me from that to Mirtapazine and it seems to work even better!

#8 Daven

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Posted 10 May 2013 - 12:10 PM

Hi Mandy, thanks for the response. I increased my dose last night to 6mgs of the Melatonin and I slept the entire night for the first time in a very long time. I don't know if it's related but the tremor in my hand is much more pronounced today. I start the Azilect on Saturday morning. I decided to wait for the weekend in case I have an adverse reaction to it.

I'm sorry you don't have a diagnosis. If you don't mind me asking, what are your symptoms? What kind of doctor are you seeing? I've seen two Movement Disorder Specialists (MDS). I think the first one was getting confused because of my other problems whereas the second MDS was able to see through my other symptoms and determine the problem. Maybe you should consider seeing another doctor to see if another perspective can shed some light on whats going on.

Dave

#9 KimAgain

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Posted 16 May 2013 - 08:12 AM

Thanks for the response Larry. I was beginning to think that I was invisible.

Dave


Ouch. That's EXACTLY how I felt when I first poked my nose in here--and I promised myself I would aways acknowledge a "newbie," because it's bad enough feeling like an outsider to the world of PWOP without also feeling like an interloper in the world of PWP! (I myself felt downright snubbed!) However, I now find it's all too easy to find oneself dropping in briefly and only reading a few threads, effectively ignoring others--I apologize for that. Also, I think people are reluctant to be the first to jump in with opinions or advice, for fear of coming off as a know-it-all or something.

Let me say a belated, "Hello Dave, I see you here and I feel for you." I can imagine the place you are in, I feel many of us have been in a similar place, but this disease is as individual as the human beings who have it, so I guess no one can ever truly know how you feel. My name is Kim, feel free to ask me anything you want--either here or in private messaging--I'll try to help or point to someone here who can.

Live strong,
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#10 KimAgain

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Posted 16 May 2013 - 08:56 AM

My doctor, as well, will not diagnose me with PD yet. It has been 10 years! However, he did have me go on a very high dose of melatonin, 10 mg/night, which helped. For some reason though he recently switched me from that to Mirtapazine and it seems to work even better!


I remember the day I was diagnosed (we all do, I'm sure) and the feeling that I could just punch the lights out of the doctor delivering the bad news--little did I know that I was actually "lucky"--since I was at least getting a definitive diagnosis! "How sure are you?" I asked, "One hundred percent" came the instant reply. Well, I was having none of that! I wanted him to, "Find something else!!" (Yeah, I know, real intelligent... but, we all handle denial in our own way I suppose.)

I have tried to imagine the frustration of chasing a diagnosis and not being able to catch one and, I admit, I am at a loss to even imagine the angst such a situation must cause. Is seeing another doc feasible for you?

Live "despite,"
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#11 Daven

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Posted 16 May 2013 - 11:14 AM

Kim,

Thanks for the welcome. I guess the reason why no one responded is because I joined the site last year in October. I was pretty numb after my doctor informed me of my diagnosis. I didn't take the opportunity to follow up with any questions. My oldest daughter was having surgery on her feet during my appointment, so needless to say I was a little distracted. My wife will be coming to my next appointment in August where I'm sure we'll have compiled a list of questions and concerns as we try to wrap our heads around what all of this means.

I'm not sure how this changes my life yet. How many good years do I have left? Should I even be thinking about that? I'm hoping once I titrated up to the 1mg of Azilect that it will help with my biggest problem which is the fatigue. The tremor in my hand is minor right now, although it is more pronounced than it was 9 months ago. I am sleeping through the night since I started taking the Melatonin, so that's one feather in my cap.

Dave

#12 Sean

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Posted 16 May 2013 - 12:04 PM

Kim,

Thanks for the welcome. I guess the reason why no one responded is because I joined the site last year in October. I was pretty numb after my doctor informed me of my diagnosis. I didn't take the opportunity to follow up with any questions. My oldest daughter was having surgery on her feet during my appointment, so needless to say I was a little distracted. My wife will be coming to my next appointment in August where I'm sure we'll have compiled a list of questions and concerns as we try to wrap our heads around what all of this means.

I'm not sure how this changes my life yet. How many good years do I have left? Should I even be thinking about that? I'm hoping once I titrated up to the 1mg of Azilect that it will help with my biggest problem which is the fatigue. The tremor in my hand is minor right now, although it is more pronounced than it was 9 months ago. I am sleeping through the night since I started taking the Melatonin, so that's one feather in my cap.

Dave


Hello Dave...sorry to see you here but you'll be glad you've finally decided it's time to reach out to others sharing your experience. I'm now 40 years of age and have had outward symptoms of PD for the past 15 years, was diagnosed 10 years ago, and a DaTscan recently confirmed my initial diagnosis. Honestly, when first diagnosed, I hadn't a clue as to the meaning of all this. I didn't know anything about PD and became a bit more frightened with every forward step in my learning process. I can distinctly recall saying to myself, "at least now I know how I'll die." Immediately after hearing the words in my head, I told myself that I had to snap out of this way of thinking! Yes, PD can be life-altering but it doesn't have to be life-ending! Keep talking with your physician and others who are walking this path with you. Please ask, no, demand what you feel you need from your physician and become the owner of your body and this disease. I'm ten years now into this battle and my ammunition is a potent cocktail that includes 5 25/100 tabs of Sinemet 4x daily, 100 mg of Amantadine 3x daily, 200mg of Comtan 3x daily, 1mg of Azilect 1x daily, 800mg of Skelaxin (a muscle relaxer) 1x daily, 5mg of Flexeril (another muscle relaxer) 1x daily, 10mg oof Baclofen (yes, another muscle relaxer) 1x daily and, finally, 1mg of Clonazepam 1x daily at bedtime for sleep. It took 6 years of trial and error for me and my physician working together to create this concoction but it works for me, at least for now, but it allows me to continue to function so that I can continue my career as a practicing attorney. It also allows me to do most anything I want to do such as exercise...I love running...hiking, swimming, roughhousing with my boys, lectoring in my parish church, loving my wife and most all good things in life. Yes, i sometimes pay the price, but, If I'm faithful to my drug regimine, the price is held in check. Yes, I hate having to take so many pills each day, I also take 2 bullets of CoQ10, 1 football of Fish Oil, and a multi-vitamin each day, but, these are MY only choices at this time. Yes, I'm most likely headed for DBS surgery next summer so many of these pills will probably no longer be needed and I'll welcome the DBS and hope it also allows me to keep going as long as possible.
Take care, friend. PD is tough so we have to find the will and wherewithall to keep going. NEVER GIVE UP! Stay positive but don't be afraid to vent when needed. Forums such as this are great places to vent and to offer help and to learn. I look forward to many more "conversations" with you and hope for nothing but the best for you and yours as you begin this new "alternate route" in your travels through life.
Take care,
Sean

#13 Daven

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Posted 16 May 2013 - 01:39 PM

Sean, I had an uncle (through marriage) who had PD back in the 70's. He lived a remarkably full life. Back then, no one mentioned it but it was very evident that he had it. He was really wonderful man to be around, at least that's how I remember him.

My Doctor is trying to keep me on a minimal amount of pills right now per my request. I take way to much medication already, Pravastatin, Niaspan, and the 2 football sized Fish Oil/Omega 3's for my cholesterol, Lisinop/HCTZ for blood pressure, two Metformin horse pills twice a day for my Diabetes, a Men's over 50 Vitamin per my wife, and then you have everything I take for my neuropathy which is 10mg of Baclofen twice a day, 15mg of Oxycodone for pain every 4 hours, and Trazadone at bed to calm the nerves while I sleep. So far I've only added 2 new pills in the form of the Azilect in the morning and the Melatonin at bed. I sure hope I can be a minimalist for the time being. I'm so screwed when I retire one day if I'm ever able to. I may be working to just pay my prescription bill.

Dave

#14 KimAgain

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Posted 16 May 2013 - 09:38 PM

Dave,

Do you mind elaborating about your neuropathy symptoms please? I am on pain medication, too, and feel so much shame about it. But, my feet and... well, I'd like to know if we have similar pain issues?

Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#15 Rogerstar1

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Posted 17 May 2013 - 12:12 AM

Kim, et.al -

I had DBS last August and have a sense that my 8-9 month honeymoon period is wearing off. Most problematic is a pronounced pain in my ankle. You intimated you also experience foot pain and I wonder if you attribute yours to a distonia or neuropathic symptom. Mine only bothers me when any weight is put on that ankle. Feels like it might be a stress fracture but x-rays have been negative and an MRI is not possible due to my DBS contraption. Can't say that my disabling ankle pain responds to L-dopa as a similar elbow problem used to. Do we have anything to talk about? regards, Roger

#16 Daven

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Posted 17 May 2013 - 07:42 AM

Kim,

First off, you should not feel shame about taking medication to control your pain. You have a right to be comfortable. You may not be able to be pain free, but it should be managed enough so you can function. Pain causes stress and isn't that one of those things that is bad for a PWP.

I've had four back surgeries. The first was back in 2001 in response to a ruptured disc in my lower back. I was left with permanent nerve damage from the rupture. For the most part everything was minor and I went about my life living with the problem. Over time, the bad disc disintegrated and the disc above it started to dry up from all the additional stress placed on it. In 2007, I underwent a 2 level fusion to stop any further damage. Unfortunately, I was left with a lot of nerve damage because I procrastinated on seeking medical assistance. In 2008, my doctor had to do a revision of one of my fused levels because my body absorbed all of the bone. I did end up fusing and my back is stable, but I have a lot of nerve damage as a result. Late 2009, I had a Spinal Cord Stimulator implanted to help control the pain.

Now that you have the history, I'll try to explain the nerve pain that I experience. The tops of my feet and the front of my ankles burn like the worst sunburn you can imagine times 10. My stimulator is quite effective on this type of pain. I rarely wear shoes because anything touching my feet for a prolonged period of time will feel like someone poured acid on them. Then I have what I refer to as tender foot. Some people will say it feels like walking on broken glass but to me its more like I'm walking on my bones. It's very difficult to explain but the oxycodone helps a little with this pain. My third pain generator is in my left leg where it feels like someone placed a wire inside my calf. The wire is then heated to the point that it glows red. It's a searing hot pain. My stimulator is not very effective on this pain, hence the need for the oxycodone. My pain levels hover around the 5-6 level when everything is working.

My left leg is partially numb from the knee to my toes and I have some numbness in my right big toe. My right foot has drop foot which is irritating when I walk because my foot slaps the ground with every step I take. The muscles in my legs look like there are bugs crawling inside of them because my muscles fasciculate 24/7. The fasciculation is worse at night than during the day. The fasciculation will trigger cramps that feel like your legs are being turned inside out. Baclofen is quite effective in helping me manage this problem. Roger, my cramps feel very similar to what you describe but rarely do I get one while I've have weight on them. Now, if I try to stand during a cramp, that will intensify the cramp 10 fold.

Opiates are usually not very effective on neuropathic pain. That type of pain usually responds better to medication like Lyrica, Neurontin, Cymbalta, Topomax, or Savella to name just a few. I was very sensitive to these prescriptions and experienced side effects that prevented me from taking them.

Roger, a few years ago I used to take Lipitor for my cholesterol. It was really effective till one day a tipping point was reached. My muscle enzymes became elevated and I started spending my evenings on the couch in extreme pain. My legs would cramp uncontrollably for hours on end. Once I stopped the Lipitor per my doctors orders, my cramps returned to their current baseline. There is a blood test to check these levels.

Dave

#17 KimAgain

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Posted 17 May 2013 - 10:55 AM

Roger,

Sounds like the ankle pain you are having may be something akin to the pain I have had when I have been <searching for the right word or phrase!> over or under stimulated/mis-adjusted or my meds/DBS mixture is off! Usually, dystonia of some sort is the result, which then causes a pinched nerve in my foot, running up my leg into my back (no, not the other way around--adjustment corrected the issue), or a "twisted ankle" feeling.

My Mother was always a bit over the top on proper footwear, "you only get one set of feet to last a lifetime and there are no dentures for the feet, so take care of your feet!!" needless to say, I have always worn good shoes and pampered my tootsies, SO, I was more than a little shocked when I began to notice what appeared to be the beginning of a bunion on my previously perfect left foot! This is when I realized that my toes were still dystonic enough on that foot to be pulling my big toe under my other toes. This was, however, causing no pain that I noticed--OR, I had become accustomed to the pain--either way, it was causing undetected damage. The toes on my right foot have been curling under for a long time, making shoe choice limited to those that will strap on or stay on by themselves without the need for much muscle control.

My DBS is adjusted to allow less meds (I am on 4 Sinemet a day now), but it is a tricky balance. I teeter on the edge of symptoms all the time now, it seems, and I could be a lot, lot closer to symptom free IF I were to take more meds. But, my MDS is very worried about possible future Tardive Dyskinesia, so he's adjusted me to drop my Sinemet use. On my previous setting, I was able to stay on six pills a day (25/100 Sinemet CR) for three years. It has been suggested that I try Botox in my feet to correct the remaining twisting, but OUCH! Which brings me to my curiosity about neuropathy...

The soles of my feet are SO tender that I simply cannot go without shoes, even on a rug, anymore. In fact, I cringe when I so much as use a bubbly washcloth on them. I first noticed it about five years ago when a friend took me for a pedicure... When the lil' gal grabbed my foot and started "massaging" it, I suddenly squealed like a little piglet and went airborne! I frightened everyone in the place, including myself! Things have gone from bad to worse since then. God forbid I ever stub my toe... I invent new language--and, it's never the good kind.

Dave,

WOW... your message came in as I was typing a short while ago. You certainly pulled me out of the Blue Hole of depression into the Purple Pillar of Admiration (never heard of that? Oh, well it's... OK! I just invented it, but sheesh, I was lost for words!)--next time I have a "the burning in my leg is just too much" day, I'm going to re-read your post.

Let me address as much as I can before my friend gets here to help me clean my house! (I have two of the kids I volunteer with coming to spend the night and my friend Nancy is coming to help me get the house ship shape so the kids can trash it again... makes no sense I know, but ain't* that a woman for ya?!)

First, the pain meds. I am taking hydrocodone on the days when the twisted feet/leg/muscle pain is just awful. I am careful with it and so afraid of addiction, I "punish" myself if I have had to take a little more one day (for extreme pain) by taking none at all on a day when I can tolerate pain better. I rarely mention to anyone that I use it at all because I have been treated in the past to that "knowing look" that says, "Oh, so you have a pain pill problem?" and I simply refuse to defend myself. (OK, perhaps I am overly sensitive because of all the addiction in my family, too.) Only my closest friends know and they are all supportive--"don't you dare suffer anything you don't absolutely have to!"

Yes, pain absolutely causes stress. Ditto, lack of coordination, balance, the wobblies, twitchies--and all the miscellaneous idioms for symptoms associated with discomfort or poor functioning in PWP (did that make sense? I'm running out of time, Nancy's on her way).

Wait, she's here. OK, I'll write properly when time is kinder... which may be a day or two because I have kids coming and my husband on his way home from a business trip (YAYY!!), so please do not think I am being rude or neglectful, I just cannot juggle fifty things at once anymore. :wacko:

I LOVE this thread!
Be well,
Kim

*Being British, I've never used that word before--spell checker is red lining it--did I spell it incorrectly??

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#18 Daven

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Posted 17 May 2013 - 11:59 AM

Hi Kim. One quick question. If you were having a bad day and needed to take an extra Sinemet, would you punish yourself by taking less the next day? I'm pretty sure the answer to the question is a NO. Why would you do that with your pain medication? As long as you work within the confines of how something is prescribed, you should have no worries. Who cares what other people think?

Dave

Ok, that was more than one question.

Edited by Tired, 17 May 2013 - 01:20 PM.


#19 KimAgain

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Posted 17 May 2013 - 03:54 PM

Dave, I concede. :???:

Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#20 KimAgain

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Posted 19 May 2013 - 04:19 AM

Almost 5 a.m., and I am chasing sleep... hard. Had a tea party for twelve and thirteen year-old girls yesterday. The tension in my muscles is unbelievable, but I don't think it's caused by tea parties or struggling to stay ahead of two young girls, in fact, I know it's not. My little dog Hannah is in distress--and this means, by definition, that I am, too.

Dave,
It would seem that your kind of nerve pain is more of a burning sensation than a pins and needles thing, if I read correctly? But, it also causes your feet to feel tender? Mine are so tender at times that I cannot touch them myself! Is neuropathy, if you know, more of a clinical diagnosis thing, or a specific test thing? I do not have diabetes or anything like that.

OK... Muscle relaxers kicking in, the tension is leaving, so I think I should pull the shades on my notebook for now and say goodnight/morning.

I'll torment you all with a real post as soon as I am again able to open the shades and peek out at the PD world to see what you are all up to.

Dream big and lovely everyone,
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.





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