Do I have Parkinson's or not?

I was diagnosed with Parkinson's in 2009. In 2010, on the recommendation of my Neurologist, I started treating my symptoms with Carbo/Levo 25/100. One half tab three times a day. After three months there was little change to my symptoms and things actually appeared to be getting worse. We began titrating up on a somewhat regular basis. Nearly seven years later, I now take sixteen Carbo/Levo 25/100 each day. For the past four years my symptoms have been fairly well managed. I walk now with a nearly normal gate, my tremor is hard for the uninformed person to usually notice, and my speech is greatly improved.

Now, because for the past four years I have stabilized and had very little progression of the disease, my Neurologist suggested the other day that maybe he was wrong, and that I may not have Parkinson's. He based this on his observation that my symptom have been stable for the past four years, with only minor adjustment of medication.

It seems to me that the amount of Carbo/Levo he has me on would have some type of negative effect on me if I did not have Parkinson's. If you don't have Parkinson's, can a person just take Carbo/Levo without any Side effect?

Has anyone out there have a thought on this or heard of this before?

39 Replies

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  • I am not a pd specialist. You say you have pd symptoms and were diagnosed. You are taking a high dose of l/c. Your doctor's comments are strange - change doctor is my suggestion.

  • 28:16

    “They may have been taking a particular medication that it self induces Parkinsonism and unless that is recognized the disorder will continue and lead to increasing disability.”

  • Well worth watching

  • Again a great video Roy I did not Know that dopamine was toxic, you taught me something new. Again thank you. I bet you that I was going to give you Props again.

  • Everything you say sounds like Parkinson's to me. There are many people who post here who seem to be stable. If your current routine is working tell your doc don't fix what ain't broke.

  • Perhaps you are now on the dose that replaces the normal amount of dopamine required to function, i.e. none of your dopamine is coming from your own body at this stage of a degenerating disease so no adjustment necessary. Having said that this is sheer speculation by a non medic as I have never come across this scenario.

  • I read somewhere that if your symptoms improve with the medication for your Parkinsons, that confirms the diagnosis

    I am on the same but less medication as you and it also works really well for me too. I have had P.D. For over six years and I am doing really well.

  • I ve also heard that if symptoms improve with increased medication, that confirms a diagnosis.

  • It might contribute to a diagnosis but does not necessarily confirm a diagnosis. The main way to find out is from the symptoms.

  • I thought the best way to find out if you have PD is to have a DAT scan of your brain. That is how two different doctors found mine after being to 5 different doctors who had various diagnoses like essential tremor.

  • In some countries DAT scans are not readily available but should confirm there is a neurological problem. Generally though the symptoms are pretty obvious, rigidity, tremor, slowness of movement, anxiety, sleep disruption etc.

  • Reccomend look up Parkinsonism..

    BilDEvid

  • Why, Bill? What will I find? Having been dxd with PM by drs at UVa, Harvard and Mayo, and confirmed as having PD by a DatSan, i have been able to resolve 10 of the originak PD symtoms. And i recently visited with a naturopathic MD who himself has had full fledged PD for 15 years and still pratices. He changed my dx from PD to Parkinsonism and predicted that after further testing he could make me sysptom free.

    Do you know what he means by "Parkinsonism" and how it contrasts with PD?

    Bob

  • Parkinsonism are symptoms resembling Parkinson's disease but may not be caused by Parkinson's disease.

    Some medications and other medical conditions can cause symptoms that are similar to someone with Parkinson's.

  • Like you I have the same thoughts. I was diagnosed with PD in 2008, had brain scan, cat scan, etc and medics confirmed PD. Doc has me on Pramipexole 700MCG 1MG and Co-Benaldopa X 3 times daily. I am a bass player and continue to gig at about 90% of my pre diagnosis ability. Can still ride my 1584cc Harley Davidson regularly. The tremor in my right hand is not much worse than it was 8 years ago. The Parkinson's nurse I see on 6 monthly intervals says I have a very slow progressing form of PD. I really do wonder if I should be taking all this medication, I am aware that it has affected my self confidence, I am not as gregarious as I used to be and I suspect the meds have caused this.....I am a 67 year old Male who is otherwise in good health......not sure what to do.....any advice welcome.

  • You only mention one symptom, tremor in right hand. No other symptoms like lack of facial expression, blinking less, stiffness, loss of fine motor skills, slowness of movement?

    Do you exercise? If so what. If you just have a tremor it might be essential tremor - is it a resting tremor (PD) or moving tremor (ET)?

    Surely your neurologist would know? Amazes me.

    You have not lost any fine motor skills if you are playing bass after 8 yrs. My guess is you haven't got pd but ET. But I haven't got much info, never met you and I am guessing based on your 100 words.

  • Just got in after a gig and saw your post, thank you for taking the time to write. I have little doubt that I do have PD..... diminished substantia nigra shows up in scan etc etc. And yes a "resting tremor". The slowness of it's progression makes me wonder if I need all this medication, and, whether it is the meds or the PD that have robbed me of my gregarious self confident personality....I suspect it's the meds. Time to talk to the PD nurse

  • bass123 - these are just hunches from me. I think it is more likely to be the pd as the right amount of meds should make life better - make you feel better. However, I know problems can arise with wrong dose and bad reaction to agonists.

    I have found my own mood more solemn I think because

    1) I have pd, it is serious and a bummer

    2) My face is not as mobile as it was - pwp have less expression

    3) The future is uncertain with pd so optimism is in shorter supply

    4) People who know I have pd joke with me less

    I posted a question a few months ago about the mind set of people with pd and it just scratched the surface.

    If I could completely ignore what other people think I could be happier in company but it is easy to become self conscious with pd (understandably so). There is no easy solution to this.

  • I thought the same thing . . . I actually only have two minor symptoms left - small'ish handwriting and low voice - all the rest have disappeared, No shaking hand, twitching left leg, a pronounced unbalanced gait, etc. In short, my Neurologist said, "Go off the meds." Though he should have warned me to ween myself off of them, I went cold turkey for three weeks. By week three, I was begging to go back on them. Were the meds (Carbo/Levo) addictive? I don't know, but I read that they are. Talk to your Neurologist.

  • It might be that your neurologist said go off the meds to assess your symptoms but it was a gross error not to inform you to do this gradually over a few weeks. You don't say what dosage you were on? Did your symptoms return after 3 weeks without meds?

  • I agree, and I said a word or two about it. Yes, the symptoms were still there. That's when he added amantadine x 2 to my regimen of carbo/levo 1 1/2 x 3 per day.

  • It will be a great thing when an accurate diagnosis of Parkinson's is available. But for now we have to rely on what is available. Then there is the problem that this disease is different for most people. If we have symptoms that are causing problems in our daily life then it must be an advantage to be able to control them with medication. Why would the medication be causing harm when it is giving benefit. At present this is all that is available and findind a good Neurologist is also very important.

  • Is it wise to reduce medication over time? Ive thought about it, just to find out

    a would symptoms re appear?

    b would they then get worse or wear off altogether?

  • First, I want to thank each of you; Ozie, RoyProp, Bazillion, Park_Bear, Paddyfields, GailBaily, Joytheteach, BillDavid, Bass123, Vincia, Lu45 and anyone I might have missed for your thoughts and comments. This is the first time I have ever done something like this, and was quite frankly surprised at all the responses. I regret my rather late response, but I am just coming out of a severe off period after a screw up on my part.

    I now feel that I should have shared a little more information in my first post. My tremor first became noticeable in 2007 while trying to fish. it was minor, and only appeared present in my right hand. At that time I was running Marathons and in excellent health. My GP suggested that I change my diet and cut back on my running. One year later (2008) during my annual physical, the tremor was now noticeable in my right leg. My wife, staff and coworkers began noticing speech issues, and I was having some minor difficulties with typing and other dexterity issues. I was referred to a Neurologist who ran a battery of tests over several months. He finally concluded that I had Parkinson's. I then began to seek out a second opinion, and the diagnosis was confirmed. I then visited Oregon Health Science University, and again the diagnosis was confirmed. It was now 2009. By the beginning of 2010, I had significant tremor in the Right side, and was beginning to notice cognitive issues severe enough that my company early retired me. Sadly at less than half they were paying me while full time employed.

    On to medication, I won't digress to the information formally given, but will say that it took me quite some time to agree to start Carb/Levo because I was of the camp that the sooner I started the meds, the faster the disease would progress. However, my quality of life was suffering as well as that for my wife and children. So, started a low dose, and now have titrated up to a high daily dose. I also take Clonazepam to help sleep through the night and have underwent two sleep studies that the Doctor concluded that my meds were wearing off during sleep which he believed to be the cause of what appeared to be RA&LS.

    For the past four years I have been suffering from severe nightmares that are not only horrific but way to surreal. I have a great deal of chronic pain in my neck and feet. My cognitive issues are worsening gradually, I am having eye sight issues that my Ophthalmologist believes are related to Parkinson's and my Urologist has begun treating me for issues commonly related to Parkinson's to help prevent embarrassing moments.

    So, I am sure you can understand my confusion when my Neurologist proclaimed that "Maybe I don't have Parkinson's". Per my Neurologists recommendation, It only took one week of being off of all my meds before I landed in the ER nearly dead. Two months later, and I am just starting to get back to where I was. Not a great place, but better than where I was since being released from the hospital.

    I am sure I still missed a lot here, but thank you for your patients in hearing the rest of the story, and again thank you for your previous feedback.

    (FYI; I use to type as a part of my work. This just took me over two hours to type)

    Thanks,

    Cabinfevermt

  • My heart goes out to you for what you have endured. Sometimes life sucks. I am convinced you should change neurologist, any trust must be broken? You know yourself, from your symptoms you have pd so him doubting it seems ludicrous. Too much medication can be as bad as too little so a new neuro could advise.

    The nightmares would be a problem - is this something you have discussed with your doctor?

    On another note, I have noticed that quite a few marathon runners seem to get pd, have you noticed this?

  • My Neurologist has little interest in addressing the nightmares. I had not heard about Marathon runners and PD. I will look into it further. Thanks

  • It is only my observation about marathon runners.

  • Good Morning.

    We share some common threads - long distance running (trail ultras), diagnosis in 2008, and tremor. I live in Wisconsin. We have too many people in the Ultra community that have ended up with chronic Lyme or related tick borne illness because of a delayed diagnosis. We have learned that Lyme can attack your immune system and open the door to an array of other immune disorders like rheumatoid arthritis, peripheral neuropathy, including Bell’s palsy, as well as pain, numbness or weakness in the limbs. Polymyalgia rheumatica is another one tied to Lyme. Some links for you below.

    Consider a visit to an infectious disease specialist. I was tested positive for Lyme and the physician suggested a spinal tap. I was told that Lyme and related tick borne disease can cause definite neurological problems. I discussed my infectious disease specialist visit with my Parkinson's neurologist and was told because I responded so well to carbidopa-levodopa that i definitely had Parkinson's. So, I never followed up on the spinal tap. I think my Parky is related to a severe head injury (hit by drunk driver when I was 50) where I was unconscious and then had severe perseveration for a couple of days.

    As you know, PD affects people differently. When I was diagnosed I maintained my physical training at 30 minutes to 2 hours a day. At 70 I still work full time (self-employed). Predominant symptom is still severe right hand tremor. About 2 years ago I developed foot dystonias in the AM before I take my first 2 Sinemet. Otherwise, I feel great and I have relied on Sinemet pretty much from the start. But, I appreciate that the onset of dyskinesias could be right around the corner.

    I hope you are able work through your symptoms and either get the proper diagnosis or confirm the Parky. What's striking to me is I know people with chronic Lyme who have matched your symptoms over a period of time.

    Best to you and good luck!

    foundationforpn.org/what-is...

    ninds.nih.gov/disorders/lym...

    columbia-lyme.org/patients/...

  • WOW!!! I could almost be reading a synopsis of my life with PD, especially more recently. I am a 68 yr old woman, mother of 2 adult sons & 2 granddaughters. I was a headteacher for over 10 yrs & have been dxd for 12 yrs. My first external symptom was so vague it took a long time to persuade my GP to take notice. It was not tremor or gait change but I felt that I was very gradually losing the use of my left side. Once persuaded something was wrong he asked me if I would mind taking part in a nerve trial at our local hospital. The upshot of that was: my nerves were OK but this meant messages from the brain were being scrambled. I probably had PD.

    I must add at this point that I was experiencing other symptoms such as lack of confidence, fatigue, sleep & concentration, all of which I now know are a huge part of PD & for me more significant than motor function.

    The consultant who dxd me is a gerontologist with a special interest in PD. He saw my husband & I within a fortnight, allocated us a PD nurse & enrolled us in a medical trial at Birmingham University.

    Here's the clincher - if you want the best advice on any aspect of PD find a trial you can enter. I was fortunate to be accepted on a multi-national foetal stemcell transplant trial. As part of the trial I had every kind of scan imaginable, access to six monthly visits with leading PD experts etc. PLUS the incredible motivation that I was able to help find a cure.

    Re some of your other concerns especially about managing meds I'll contact you the site as I too find the keyboard wearing.

  • Thank you

  • There are 2 major symptoms which help differentiate idiopathic PD from, say, drug induced parkinsonism. Many drugs can induce a Parkinson's like state and people with 'real' PD usually have lost sense of smell and/or have constipation. Drug induced 'parkies' - if you will, do not lose olfactory function, do not become constipated and have non-progressive, bilateral (both sides of the body) rigidity without resting tremor. In 16% of drug-induced PDism 'real' PD develops with olfactory dysfunction. From reading about the subject, there are nearly 1001 causes of parkinsonism ranging from radiation exposure, heavy metal toxicity, legal/illegal drug use, bacterial, viral and fungal infection(s). Yesterday I was reading about Typhoid fever temporarily inducing parkinsonism in a 2014 outbreak in Africa. The question is did you either lose/lost your sense of smell or have constipation?

  • i do not have constipation and i have not lost my sense of smell, but i do have pd (confirmed by dat scan). not that you asked me ;-)

  • Smell was lost in 2011, Taste in 2015. Urologist has been helping me with constipation since 2013

  • That's it I have to have a pocket silvestrov. !

  • Many PD sufferers have not lost their sense of smell, and not all suffer constipation. You have to remember that each case is different.

  • All the neurologist with whom I have met have said that a definitive dx of whether you have PD can be made by taking a DaTSCan. Have you taken one?

  • I have one scheduled for the end of January

  • After reading more on DaTSCan, including information from the Manufacture of the DaTSCan (GE), I am now less convinced that the test is even remotely definitive. The test appears to be no more accurate than clinical diagnosis. In fact, GE states that the test should not be used to diagnose PD, it should only be used as a clinical tool in conjunction with typical clinical evaluation and testing. Furthermore, the DaTSCan, when used independently, was less accurate in diagnosing PD and Parkinsonism than clinical evaluation and testing.

    I,m still going to do the test, but only because it provides one more tool and my insurance is going to cover the $10,000 cost.

  • I agree, get a new doctor. And ake the DATSCAN. It is the definitive test to determine if you have PD or not.

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