A tough one to write gang but here goes: I was dxed about 2.5 years ago. I started on Azilect and then Requip . I did well on both of them but here we are two years down the line and I started Levadopa in November. My main concern is that it appears to have little effect and this is usually pointing towards a Parkinsons Plus syndrome unfortunately However, there appear to be certain aspects of my conditions that discount Multiple System Atrophy (I know hat I haven't got PSP or CBD by the way).
For example, none of the PD+ syndromes has loss of smell as a clinical feature whereas this was the first thing that I lost about 8 years ago. Similarly, virtually all men with MSA who present to their GP have erectile dysfunction (which I don't have) and hypotension (which again I don't have). MSA presents with symmetrical limb issue/dysfunction and again, my early issues were all - and remain mostly - on one side.
So any insights from the community would be very helpful if you can offer them. I'm getting frustrated with Levadopa's lack of efficacy and don' know what to do to be able to remain in work.
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jeeves19
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This thing we call Parkinson's is a strange thing. Symptoms are different for everyone. You sound to me that you do have pd. How much Carbadopa levadopa do you take. I would increase the dose until it worked or made me sick.
Thanks for the advice and time taken Bailey. Much appreciated. I started on 150mg in November and crawled up to 200 and this week I'm trying 300mg per day. But none of these strikes me as making much of an impact. As I said, both Azilect and Requip DID have quite a good effect and I was looking forward to the time that I'd have on levadopa :/
Mind MSA is one of the most misdiagnosed syndromes. Approximately 10% of patients with a diagnosis of Parkinson disease are found to have MSA at autopsy. It is the reason that special techniques are developed to differentiate the disease (FDG-PET, 23I-IBZM SPECT, MIBG) . Some characteristics may appear later in the course of the disease and some not; it depends on how it affects the autonomous and parasympathetic nervous system which differs from individual to individual.
Thank you! I asked because my 55 year old son died of PSP on May 4, 2017. His first symptoms appeared March 2014 (Double Vision, slurred speech and a couple of months later a stiff neck, Dystonia). Jan 2015 he was DX with Parkinson's.
Jan 2017 re-DX with PSP. March 2017 hospitalized for 7/8 days with 2nd bout of aspiration pneumonia. A PEG was installed, and he died five weeks after returning home. No autopsy was done.
Maybe you need to up your dosage, or perhaps change your type of levodopa/carbidopa too. I have been on Sinemet since 2014, 2 years after being diagnosed. I started with the slow-release ("continual release" = CR tablet) variety of Sinemet, but just this past year noticed it was lacking effectiveness - I was experiencing way too many "off" times and my nasty symptoms would creep back into my life. My doc suggested adding in a 1/2 immediate-release tablet with my CR tablet (4 x a day), and it helped a little, but I still felt I wasn't getting the relief I needed. When I told my neurologist about my problems with motitlity/digestion, he decided to try me on 1 and a half of the IR tablets. I only take my slow-release tablet at night now. My whole regime works much better! So, it was my sluggish gastro tract that wasn't getting the proper absorption of the pills. Not sure your situation, but just tossing that out there in case it may help. Good luck!
Sorry I'm asking too many questions...Do you experience any tremors?
Jumping up from zero to 300mg Madopar in a couple of months with a little or no effect needs further consideration. After all you already take a dopamine agonist and a MAO inhibitor. I've seen similar regimen but instead of Requip some are prescribed Mirapex (pramipexole) which another potent dopamine agonist. What is your neurologist saying?
It's been a while hearing from you, Jeeves 19. I’m sorry you’re having these problems without relief. Being able to work is really important. I have never been on Azilect or Requip, so I can’t say anything about them. I am on Sinemet, and since my symptoms have gotten worse and the Sinemet became less effective, I went in to see my neurologist. He upped my dosage of Sinemet quite a bit, when he tested me and saw signs that my PD was advancing. For now, I’m much improved, with very little tremor, and stiffness, and freezing gait, all of which I had before. I, also, have had autonomic system dysfunctioning, such as what can be seen in both PD and MSA. I have orthostatic hypotension and erectile dysfunction, and cogwheel rigidity in all four limbs. I am retired. I used to have a retirement job, but I don’t think I could work now. I’ve been diagnosed with PD and Ataxia, but not MSA. My best advice for you, would be to get an evaluation by a well qualified movement disorders specialist. Perhaps imaging tests and further examination could get to the root of the problem. Neuro-degeneration and it’s effects throughout the entire nervous system, can be diffuse and is not the easiest ailment to decipher, that’s why, sometimes, doctor’s don’t know for sure all that some patient’s may have had wrong, until autopsy. That’s what scientific googled reports state, referencing pathophysiology of neuro-degeneration.
Whatever you do, do not self-diagnose yourself. I know it's very frustrating when you don't get the result from medicine. I am surprised that you were put on Azelect before you started with l-dopa. Azelect is given to improve l-dopas function. I would query that at the next appointment with the neurologist.
If uncertain about medicines or diagnose ALWAYS ask questions. It's your body and life they are talking about. Always have an A4 size of paper when you go, even if there is only one question on the paper and tell him you have questions.
Thanks Aussie. Appreciate the concern. Spoke to the MSA Trust today who listened to my symptoms and said that they felt it probably wasn’t MSA BUT they did think that the lack of response to Ldopa was a concern. Bit of a conundrum!
Hi Jeeves19. I’m having the same concerns with my husband who was diagnosed in Nov 2017. His movement disorder specialist just keeps upping his Rytary and he is now on 8 tabs a day. I still don’t see the “this is really helping” from him and he too can not return to work, drive or us in the mood to get dressed go out etc. He doesn’t have tremors. He has ORtho static hypotension. Not sure what our next steps are going to be. Some one reminded me to be patient.
Hi Tiger, Just wrote to Kempton below. Won't repeat as its there for you to read. I wish that I had some suggestions but am sitting in the swamp myself festering. Sorry for you and your husband. Keep in touch and lets hope for the best.
May take time. I started with sinimet 3.5 yrs and then azilect a few months later. I didn't see improvement until later. I now can say definitely it helps, but as soon as it passes from digestive track, to blood, to brain it begins to wear off, and symptons return and so I know it worked. I don't know it was a matter of months or a year. So hard to objectively observe oneself, except to notice the inclines and declines. Neurologist three years on said confidence in diagnosis takes time, but idiopathic pd it is. I believe mine are similar symptoms.
Thanks for posting. The whole thing is annoying to me. I was just saying to someone on a private message that I have none of the cardinal signs of MSA (my blood pressure is normal, I have no sexual dysfunction, I have no slurred speech, I never fall, no vivid shouty dreams etc) other than bradykinesia and a resistance to Levadopa seemingly. Time will tell I guess but it's such a pain when you've been looking forward to the day you'll start the 'Gold Standard' and it turns out to be a damp squib as we say in Britain.
Hi Jeeves 19. I know it's hard, but try not to diagnose yourself. I go through similar cycles of fears that it's atypical pd each time when symptoms worsening and medication stop working. And each time anticipation and anxiety makes those new atypical symptoms real. With Ldopa medication there is a certain concentration trash hold after which you should feel an impact. I thing those amount you mentioned (even 300 mg per day, how do you split it between doses? ) may not be sufficient. And try to optimize absorption by timing of your protein meals. I used to ignore protein rules, and it was fine, until recently; I feel a major difference now. One more thing, the negative effect of anxiety is extremely powerful and could be long lasting, it works as a negative placebo effect, and cause an actual physiological response. The first neurologist who saw me more than 6 years ago suggested that I had one of the aggressive atypical form, immediately after that I "developed" all the symptoms, thanks to google. After seeing many movement disorders specialist and reversing my diagnosis to pd, it took me several months to start feeling better. It's likely that you imposed some of the negative physiological symptoms just due to anxiety. You need to work with a good neurologist on the dosing and medication schedule. Good luck.
You're very kind to have written all of that Lana. Many thanks. Sometimes when one's a bit down this site throws up some good people who offer a hand up. Cheers. Dunno what to say really. All I know is that from when I started taking Madopar I've never felt much relief and have done all of the avoiding food business very carefully. Bit weird as Azilect and Requip both made considerable differences to my quality of life. I presumed that Lev would be even better. Oh for a resting tremor I say! But apart from increasing bradykinesia, I have hardly any MSA features so I'm a bit perplexed. I do agree that placebo can be a powerful thing, but I'd at least expect SOME lessening from use of the Madopar?
It depends, how much Ldopa is in your formulation. When I started with low dose (don't remember how much exactly) per a neuro prescription - it did not do much. Then during appt with another neuro, he told me about this trash hold factor and to increase the dose, and it worked.
I started on 150mg 3 times daily in November, didn't really make any difference from what I recall so I decided to take 200 mg split between two doses. Again I never thought too much about it but was probably subconsciously believing that it was helping somewhere along the line. But my symptoms weren't particularly bad at that time. Things seem to have got worse in the last month quite suddenly. As a relative newbie (2/3 years into dx) I was always reading about people being 'off' and thought that I never had any of this 'off-time'. Some days I felt good (and didn't really seem to feel the need for any Levadopa) and some days felt awful Lana. Then I started thinking about the efficacy of the drug on the awful days. I judged that I'd take more of the Madopar on these days but it didn't do anything even though - like yesterday - I actually took a single dose of 250 mg.
I play in a band and am trying to hang on in there. But I'm struggling now to play a guitar. My 'plan' was to be in a band for therapy of various kinds, and when I rehearsed or gigged would simply fortify myself with good old Madopar and be okay for a couple of hours. But last night when rehearsing my right arm (strumming arm) was hardly working and I was so glad when the rehearsal ended so I could go home and get to bed with a book! So my 250mg didn't really deliver and hence I'm in a bit of a mental trough.
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