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DaveN

PD Progression

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Not sure where to start, so I'll just dive right in. My wife noticed sometime last year that I no longer swing my right arm when I walk. My wife was doing some research online for her mother and noticed that some of my symptoms were similar to Parkinson's. I made an appointment with a Neurologist/MDS. I've seen the doctor twice so far. He ran lots of blood work, MRI, and submitted my nerves to an EMG/NCS.

 

The blood work came back with low B12 levels which have been rectified by taking B12 supplements. My immune system also came back severely compromised and after additional testing, no known cause was discovered. I'm not sick, so we decided to just go with the flow until something changes. The MRI indicated nothing more than I suffer from migraines which wasn't news to me. The EMG/NCS confirmed the severe nerve damage that I have in my lower back and introduced some issues with my C7 nerve in my neck, which I'm disregarding right now because I'm not interested in opening a can of worms.

 

This year I've developed several symptoms that are troubling. I am worn out beyond reason, my right shoulder is always sore like I have slept on it wrong, I have a slight tremor in my right foot and right hand, severe constipation, and night sweats every night. I hadn't really noticed the tremors until I started paying attention. Now that I'm accustomed to them, they have scaled back some.

 

My doctor is unsure if I have PD and we have agreed to monitor for changes. My questions for you folks is how fast does PD progress? I've noticed some changes but nothing life altering. I really would prefer this to go away being that I have enough to deal with because of my peripheral neuropathy in my legs. I live in constant pain on a daily basis for which I take oxycodone and I have an implanted Spinal Cord Stimulator. I take muscle relaxers to combat the servere cramping and muscle twitching in my legs.

 

Dave

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Hi Dave, and welcome to our forum.

Every single patient with PD has a different progression rate of symptoms. Generally speaking, Parkinson's is a slowly progressive degenerative disease. The onset and progression of symptoms is insidious, over months to years. Progression may be more rapid in other neurologic disorders. Young onset parkinson's in particular has an even slower progression rate -as compared to late-onset PD. Time plus follow up evaluations by an experienced MDS-including response of symptoms to dopaminergic medications- almost invariably lead to the correct diagnosis.

Good luck and keep us posted !

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I started out witj tje lagging arm swing, limping, and stiff neck. Also noticed some flex issues in my left hand. I figured arthritis, carpal tunnel, old age. After about 2 years of increasing symptoms, I went to my gp doc who said she thought I might have PD. A trip to the neuro also suggested (but did not confirm idiopathic (ie cause unknown) PD. I started on Azilect$$$ and fairly quickly went to carbadopa/levadopa (aka Sinemet) and got pretty significant relief. Three years later, I am still on the slow but steady slide with only a minor increase in C/L at my last visit.

 

To my knowledge, there are no current tests for PD although many are being worked on. The answer from my brain doc is that if the meds treat the symptoms, then it is likely PD.

 

Good luck!

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Christie, thanks for the reply. I'm not sure I'm considered young but I also wouldn't say I'm old. I'm right in the middle at 51. My doctor offered to prescribe something for me, but I declined for now. I'm on so many prescriptions right now that I'm concerned with adding anything new.

 

Beachdog, thanks for the luck. I think my doctor is reluctant to diagnose because some of my symptoms can be explained away by my current diagnosed problems. I'm used to looking at things on the bright side but I sure could use a break.

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I have always said that my progression into PD is at the rate of one molecule per day, never varying from that comparison. Since 1995 I have felt funny and this feeling has progressed as even stairs since then. I really find it hard to believe how uniform the progression is. But that's the nature of the beast. I am the guy that is alergic to Sinimet, so my only medications are dietary supplements...I don't know if they are doing anything...I have gotten to the stage where I find it hard to dress myself, wipe my butt, and stand and talk to someone. There's a long list of symptoms that are attacking me. So far the only thing that brings about any relief at all are 3 aspirins, and it's only one molecule of relief. I take the aspirin about every 2 weeks, don't want to overdo it.

The best to you all, John sh

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John, thanks for the reply. Have you tried taking a low dose aspirin on a daily basis? It's good for the heart and maybe it'll get you half a molecule. I understand all to much about allergies and sensitivities to prescription drugs. It's a pain in the ass to have something that can help but unable to use it.

 

Dave

Edited by DaveN

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lately when Im working around the house the slowness doesn't see to bother me.It just takes alot longer to complete a taskI do have to be careful of over doing like showeling snow. Felt great but then all of sudden I was exhausted. back in the house for awhile then back for a few more shovels. We got over three feet since Christmas but lately it has slowed

This is new to me this year and I hope it doesn't get worse.I read from many others here exhaustion is a common problem.

Havn't gone back on the sinemt till I see my new VA doc in 6 months.I was impressed by the VA nero as he seemed very knowledgeable. he seemed very confident Im dealing with early PD and said often other doctors are reluctant to diagnosis PD early on.

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  • No one has mentioned his night sweats, but that was a major problem for me before I was diagnosed and medicated. Also, muscle cramps and a lot of other disturbances when I tried to sleep.

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I've been taking Mirapex for a little over a month now. I wasn't able to finish titration to the dose my doctor wanted, but it still seems to be helping a little. As long as I stay cool, calm, and collective, everything is copasetic. I take one pill every 8 hours. I've noticed that the tremor is a little noticeable around hour 7 every so often. It's not particularly helpful in regards to the fatigue.

 

Gardener, I hadn't given it much thought, but I haven't had any major night sweats as of late. Maybe the Mirapex is helping in that department.

 

Dave

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All my symptoms are on my right side, very similar to Dave's. My right shoulder and arm started hurting so bad about a year ago that I started seeing a chiropractor, before I was diagnosed. It was painful when I rolled over at night. My handwriting went to crap which motivated me to see a neuro. She asked me about anything else I had noticed strange. Then it occurred to me that on my right foot the toe next to my big toe crossed over onto the big toe. And, I had noticed I held my right arm rigidly when walking and I was constantly trying to relax my hand, arm. When eating, my hand would tremble slightly when returning my fork or spoon to my plate.

 

The Sinemet has slightly improved my handwriting after taking it for two plus months. I was very disappointed that it did not help the pain or rigidity in my right arm. Does anything help that?

 

John, what dietary supplements are you taking?

Edited by she-ra

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The Sinemet has slightly improved my handwriting after taking it for two plus months. I was very disappointed that it did not help the pain or rigidity in my right arm. Does anything help that?

 

Sheila, have you discussed this with your neuro ? PD-related rigidity usually responds to sinemet. maybe you need more sinemet or maybe something else is to blame? (dystonia ?). Is your neurologist absolutely certain you have PD?

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From what I gather here, that is not unusual, being vague. The symptom for several movement disorders are similar and vague. I am not yet 100% convinced I have PD.

 

I did the 23&me genetic test and the results did not completely rule me out but said I was below the average to develop PD. The actual test said, if I am understanding correctly, it says I have a decreased risk for PD ("slightly lower odds of developing PD, between 1 and 0.67 times typical odds/risk). Again, vague and inconclusive.

 

The first neuro I went to seemed very confident, almost cavalier, that I have PD. The second neuro was rather vague. He suggested I wean off the Sinemet and start Amantadine, which started my constipation. I took it for about 6 weeks and weaned off that and restarted the Sinemet. At least that helped my handwriting. I haven't been back to a neuro as I am unsure which one to go to. I am leaning towards the second one as he is part of a MDS department at a large university.

Edited by she-ra

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Were either of the neurologists a Movement Disorder Specialist (MDS)? If not, you might want to consider seeing a MDS. My husband and my sister both have PD. Both had "lower than average" risk for developing PD on their 23&Me tests. Go figure. As for them, both have found going to a good MDS was worth the wait, cost, and travel time.

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Sheila,

 

I get where your coming from. Uncertainty is a tough place to live. From what I've read on this and other sites, it takes time in determining if you have PD. Taking a prescription to confirm whether you have something is not 100% if you're not taking the appropriate dose. Has your doctor(s) done all the obligatory testing to rule out other diagnosis such as a head MRI, EMG/NCS of the limbs, CT/MRI Scan of the spine, sleep study, and lots of blood work? I'm sure I left off other testing, just thought I'd list what I've done so far.

 

My doctor is still rather vague in giving me a diagnosis. Hopefully in time we'll get the answers we seek.

 

Dave

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Sheila,

what is your current dose of levodopa? if your neuro concurs, you might need to up the dose. rigidity should utlimately respond to sinemet.

from what i've understood, "vague" opinions are common in the early stages of PD. the better we look, the younger we are, the more reluctant neurologists are to commit to a final diagnosis of PD...

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Christie, my current dosage is 25/100 three times a day. Yesterday I took a baby aspirin as someone here suggested and my arm felt much better. Don't know if it was the aspirin or I was having a good day. The rigidity felt the same but less pain.

 

The vagueness drags out my denial stage.

 

@Dave, I have had the MRI, which was fine. None of those other tests yet. Right now, I really don't have much to complain about and realize my symptoms could be much worse. I just would like to know what I am dealing with.

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Aloha Sheila,

 

I found that physical therapy helped my rigidity quite a bit. The deep tissue massage really helps to loosen up the tight muscles. My MDS made the referral and the health insurance is paying their share. I hope this is helpful.

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Just to show how we all progress differently...

 

My PD symptoms had been progressing steadily since 2004, beginning with small writing and reduced right arm swing, then developing an increasing foot drag, slight irregular hand tremor, poor dexterity, rigidity and balance difficulties, all on right side. However, this past year, those motor symptoms have pretty much stabilized, and even improved in some areas, by my measure and also my MDS. Fatigue is one thing that continues to increase along with some muscle tightness .

 

Neurologist rx'd Sinemet without success in 2007 and dx'd essential tremor. Symptoms continued to advance and started Amantadine in 2010 which helped muscle tightness (but is losing its effectiveness), Then tried Requip with disastrous results. Went back on Sinimet and titrated up to six 25/100 tabs per day. Didn't notice an improvement with the Sinemet, but it may be helping to reduce the advancement of symptoms. A DaTscan last month indicated PD or similar disease. MDS now wants to wean me off Sinemet and Amantadine. I recently started taking Neupro.

 

Am convinced daily exercise helps, especially Tai Chi, although increasing fatigue makes it more and more difficult. A daily aspirin (325mg) also seems to offer some benefit. After 7 years of steady decline, this past year has been a pleasant surprise. Interestingly enough, the DaTscan results actually made me feel better, as they removed doubt about my condition and let me better focus on dealing with the situation.

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Hello Dave. Like others, when diagnosed in early 2003 at the age of 47, it was a bit unnerving to be told "we can't give you a prognisis". It's been a 10-year journey now. Bits and pieces..

- started with reduced right arm swing, slight limp; for first year amantadine helped greatly; little over 1 year added Requip titrating up to 3 mg over a few weeks; at nearly 4 years increased Requip to 13 mg and had compulsive behavior nightmare, started sinimet and titrated Requip down to 4 mg; waited for Azilect to come on to US Market and had major benefit from 1 mg; continual increase in sinimet and stalevo years 5 through 8 1/2; clearly learned what "on/off" meant as sinimet lost it's ability to last through 4 hr med cycles...dyskinisia, nasty dystonia; Oct 2011 DBS at the Cleveland Clinic...amazing results. Reducts PD meds from 25 pills a day to 7; was at the Clinic yesterday for 15 month stimulator adjustment (hadn't been there for 9 months). Extemely grateful for successful DBS surgery. I'm now feeling better than 1 year into PD.

- Would agree that physical exercise is extremely helpful.

10 years into PD I'd say that there have been experiences that you "couldn't give me the world" to go through again, but at the same time you couldn't give me the world for the benefit of some of those same experiences. I've found God faithful.

 

Wishing you the best!

Dwight

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Dwight,

 

Thanks for the input. It's nice to know that the medical community has made some strides in combating this disease. Your DBS sounds similar to my SCS (Spinal Cord Stimulator). Without it, I wouldn't be able work and probably would have been put out to pasture a long time ago.

 

I did an experiment last night and today by taking a Mirapex holiday. I was questioning whether it was doing anything for me. I got my answer, it appears that my tremors are well controlled by this prescription. I ended the experiment this evening and after several hours the tremors are just getting under control again. My experiment has me bummed out, because the tremors are much worse than they were 6 weeks ago. Does anyone know if you stop this stuff it can makes things worse temporarily or permanently? Is this what you folks refer to as "off"?

 

Good thing I have a follow-up appointment next week. I have so many question and concerns.

 

Dave

Edited by DaveN

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Sudden withdrawal of Mirapex, or any other dopamine agonist, may cause a dopamine agonist withdrawal syndrome (DAWS). Stopping mirapex cold turkey without consulting your neurologist is generally not a good idea. One might argue it was only for two days though, so the risk was probably minimal.

 

Symptoms of DAWS are described in this interesting article "Dopamine agonist withdrawal syndrome in Parkinson disease" : "Symptoms of DAWS resembled those of other drug withdrawal syndromes and included anxiety, panic attacks, agoraphobia, depression, dysphoria, diaphoresis, fatigue, pain, orthostatic hypotension, and drug cravings"..."Dopamine agonists have a stereotyped withdrawal syndrome that can lead to profound disability in a subset of patients. Physicians should monitor patients closely when tapering these medications"

http://www.ncbi.nlm.nih.gov/pubmed/20065130

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Christie,

 

Thanks for the article. It was very enlightening. My holiday lasted a total of sixteen hours, 2 doses, so it's unlikely that I was suffering from DAWS. Basically, the only symptom that I experienced was an increased tremor in my right hand and foot. Just for reference, 4 years ago I was taking Cymbalta for about a month, but due to complications I had abruptly stop taking it. About 2 days after I stopped I endured 2 weeks of hell. I know what withdrawal's feel like, so I'll be sure to not try that experiment again.

 

Thanks.

 

Dave

Edited by DaveN

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Thank you Dave. Good luck with your appointment. i hope your neuro will help you sort out your concerns.

BTW, i don't think that stopping mirapex-abruptly or gradually-may have any permanent effect on your neurological condition. All these drugs(dopaminergics) we are taking just:

-mask the symptoms,

-have no effect whatsoever on disease progression

-mess with our dopamine in our brains (a neurotransmitter with a major role in addiction) making us addicted not only to them but also to several other things (gambling, sex, shopping, etc)

-give us our lives back! without them we wouldn't be able to move, enjoy life, socialize with other people.

(saved the best for last !)

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Thanks Everyone.

 

I'm not in a comfortable place right now. Between this new problem and my neuropathy, I have no idea what's up any more. I had my follow-up with my MDS and things are a little clearer but not quite crystal. The Myrapex is helping with the tremors in my hand and foot, but it wears off before the next dose. How long should a Mirapex dose last? I don't have a lot of PD symptoms such as rigidity, slow movement, speech changes, or writing changes. I have a little stiffness which could easily be explained away to other causes being I have serious spine issues. The only symptoms I have is no right arm swing, minor tremor in my right hand, a minor+ tremor in my right foot, and bouts of fatigue throughout the day. I asked him point blank what my problem is and he indicated that its most likely early Parkinsons because the Mirapex is helping. I asked him if it could be anything else and all he could say is it could be psychological. I highly doubt its psychological and he agreed. I'm a pretty well adjusted individual with a minimal amount of stress in my life.

 

Sorry for the ramble everyone, I don't like uncertainty.

 

Dave

Edited by DaveN

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