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cldm

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Everything posted by cldm

  1. cldm

    Eyebrow droop

    Does anyone here have trouble with a one sided eyebrow (not eye lid) droop? The left side of my face always feels a little more stiff than the right, but my left eyebrow seems to always want to be a bit floppy and drop down a little. I can still make it go and up down voluntarily if I put in extra effort, but even after exercising it up and down, it wants to drop back down. It doesn't affect vision too much, but it looks a little strange and I am conscious of it. Thanks.
  2. cldm

    Madopar vs Madopar HBS

    Hi Dr Okun I have been taking regular Madopar 50/12.5 around 5 to 7 times per day. I was just waiting until it wore off and then took another. When it wears off I feel stiff and have difficulty walking normally, and also get fuzzy in my mind. I tried 100/25 regular but it gives me a headache and makes me feel tired, and doesn't last any longer. My neuro swapped me to Madopar HBS 100/25 and it lasts much longer. Three a day along with the Azilect I already take is enough to keep me moving properly all day. The downside is that it gives me a constant mild headache and makes me feel a bit sick/tired/groggy. Although I move better over the day on the HBS, I felt way less sick taking the 5-7 regular Madopar. I have only been taking the HBS for a few days but is this side effect common and likely to improve? Thank you
  3. Hi Mark I've never posted a question in this section so thank you very much for your opinion. I also posted this question to Dr Okun but I thought I might pick your brain also if that is ok. I have been taking regular Madopar 50/12.5 around 5 to 7 times per day. I was just waiting until it wore off and then took another. When it wears off I feel stiff and have difficulty walking normally, and also get fuzzy in my mind. I tried 100/25 regular but it gives me a headache and makes me feel tired, and doesn't last any longer. My neuro swapped me to Madopar HBS 100/25 and it lasts much longer. Three a day along with the Azilect I already take is enough to keep me moving properly all day. The downside is that it gives me a constant mild headache and makes me feel a bit sick/tired/groggy. Although I move better over the day on the HBS, I felt way less sick taking the 5-7 regular Madopar. I had a similar negative effect when I used to take pramipexole. I have only been taking the HBS for a few days but is this side effect common and likely to improve?
  4. cldm

    Welcome to the club

    I started on an agonist but felt awfully sick and exhausted, and then swapped to Azilect which didn't work as well, but good enough for 6 months or so. I desperately needed something to get me moving properly and make me comfortable again. I think taking meds gets us more active, and being more active means more stiffness when you try to stop meds and give your body that sudden change. Madopar is helpful and tedious like you guessed, but I want to keep working, stay active, and run a muck with the kids, and a few Madopar during the day let's me do that. I don't take them shortly spaced enough (ie no strict schedule) so I still have on/off time. I mentally don't like the idea of that much medication but in reality I'm probably only 1 or 2 pills per day short of not having significant symptoms. If I stopped Azilect then I would have to be much more strict with timing. Sleeping is so variable for me and I don't have the answer. It can be periods of 3hrs a night, to back up to 6. I'm happy with 6, but not with 3. My best sleep is if I've been really active during days prior and a Madopar about an hour before bed. Good luck to you both. I'm sure this is as hard or harder on our families than it is for us so we owe it to them to keep ourselves moving well and positive while we can. In my view, if you can't move well then it is harder to be positive and have those short moments where you can put this out of your mind. I'm hoping as time goes by I can stop letting it occupy my mind. I don't like bothering family and friends talking about PD as deep down I know everyone has their own version of a bothersome struggle.
  5. cldm

    Welcome to the club

    Superdecooper, my issues are mostly around stiffness and slowness, with hardly a tremor. I am low 30's and take Azilect and Madopar. Madopar is a levadopa based drug like Sinimet. I started on Azilect only and it helped a lot with the stiffness compared to how I was before, but I was still uncomfortable and it's results were unreliable, especially when I got sick or tired etc. I also had trouble with knowing where my hands were and it was a bit disturbing for me. It is a strange sounding problem to try to explain. In the end Madopar helped a lot, as I think it was just a side effect of being so full time stiff, a bit like a mild version of when you sleep on your arm and you lose where it is. Madopar has given me a big boost to life as it means I can keep up with the family and work again. There is a downside though for me being slight gut trouble, but more that the stiffness can be a tad worse as it wears off. I take 50mg which lasts about 3.5hrs. 100mg doesn't seem to last any longer, and 25mg doesn't work at all. The neat thing about immediate release Madopar is that if you have to do any serious physical work, or you get crook, then you can take a bit extra if needed. With Azilect alone you pretty much have to deal with the consequences of fluctuations in your dopamine needs, although it does give a good base improvement for me. Not sure if any of that helps but thought I'd share what is working best for me so far. I'm not perfect and don't expect to be, but I am much better than where I have been in the past.
  6. cldm

    Madopar dosage

    Hi Dr Okun I have recently commenced on Madopar in addition to the 1mg Azilect I take. So far it works wonders and doesn't make me sick like pramipexole. The doc started me on 50/12.5 which kicks in reasonably quickly, around 20-30 minutes, and works for about 2 - 2.5 hours ( a bit variable in between). Given he prescribed this dose 3 times per day, there is still a considerable amount of time it doesn't work. He upped it to 100/25 morning and afternoon, with 50/12.5 in the middle of the day, but it still only lasts the 2 hours. The doc has been happy for me to experiment a bit as long as I do it for a few days at a time to be sure about the result. It is no big deal because I assume I can just take 50/12.5 more often, but I'm wondering, if 100/25 only works for as long as 50/12.5, then where does the excess go? Is it typical that a higher dosage wouldn't work for longer than a smaller dose? It also makes me wonder if I could get away with even less at 2.5 hour intervals. I am only trying to treat the stiffness which from all of my reading is more of a dystonia type thing rather than rigidity. Thanks again for your time. Much more rare than a young person with PD is someone as generous with their time such as yourself.
  7. HiI am in my low 30's and have had one neurologist diagnose me with parkinsons and one saying I have parkinsonism signs but he is not 100% convinced it is PD. Even I don't think I fit the criteria good enough so I would be interested in hearing alternative ideas.I have only two issues that have been taking me to the doctor the past 8 years, the first being a persistent tightness in my left shoulder which has been very slowly getting worse and affecting my neck and arm. The second neuro isn't 100% convinced this is related. The second issue is the one that landed at me at the neurologist, and is the most bothersome, being legs that significantly tighten up when walking. It started out being intermittent and then progressed to happening full time over 2 years or so, and is now at the stage where I can only walk 20 or 30 steps before the cramp forces me to stop. Around the same time my legs started having issues with tightness, I started having non-stop fasciculations everywhere (feet, legs, arms stomach, face etc). The fasciculations don't particularly bother me, but the neurologist insisted on a nerve conduction study which were normal.Muscle relaxers like Norgesic and Baclofen have made no difference (although the tend to help with sleeping), but completely to my surprise, pramixperole extended release gave me a full recovery after 6 hours of taking the first 0.75mg dose, and seems to work for about 28 hours. It made me feel slightly sick, and messed with my sleep after a few weeks, so the neurologist switched me to Azilect, which took about 3 days to start working, but also gives my leg issues a massive improvement. I have been on Azilect for 2 months and the leg issues are staying away, and don't seem to have any significant side effects. I also tried a non-slow release pramixperole 0.25mg which kicks in much quicker, but only has an effect for 2 hours or less, and then my legs go completely back to being stiff again.I understand these two tablets are aimed at parkinsons, but I feel like this is clouding the judgement of the neurologists.My only parkinson like symptoms that the neurologists have pointed out are a left hand that doesn't do well in a finger tapping test, stiffness and response to these tablets. I don't have a tremor, normal MRI, normal nerve conduction study, previous B12 shots for slightly low B12 which has remained normal, and take ongoing low doses of thyroxine for mild hypothyroidism which has remained normal. I'd really appreciate any feedback or alternative ideas to ask the neurologists about.Thanks for your time.
  8. cldm

    Help with questionable diagnosis

    Hi Dr Okun Thanks as always for your continued support. I am still currently only taking Azilect with occasional pramipexole for mostly muscle tightness. I still have episodes of worsening muscle tightness which mostly impacts walking for a couple days at a time here an there, but I usually wait it out rather than make myself sick with Pramipexole. I haven't had an appointment to discuss this with my Neuro as yet. I have been having episodes where my balance seems to be really off. It has only been a handful of times but has caught me completely off guard, almost as if I lost my bearings for a moment. It is usually on standing after lying or sitting. Blood pressure has been fine, but I don't feel overly well at all with a less than usual appetite and a decent amount of fatigue. I am not sure what to expect with how healthy to feel, or what I should angle toward during my next consult. Do you think the balance issues and generally feeling unwell could be caused by now being on Azilect for a long period of time, or a typical progression? If I am offered a different medication such as Sinimet then is it better practice request to drop the Azilect or to take a combination in your opinion? Thanks so much again.
  9. cldm

    Help with questionable diagnosis

    Hi Dr Okun I have now had a couple of follow ups, with two neurologists diagnosing early onset PD, and one not sure. I really don't feel confident to trust the diagnosis even though it is 2 out of 3. Just to recap I am low 30's male, issues with tight muscles mostly affecting walking, no benefit from omeprazole, baclofen etc, but drastic relief from Pramipexole but gave me nausea and worsened sleep issues, and drastic relief from Azilect after a few days of medicating. I had my most recent examination off Azilect and Pramipexole for two weeks. To my surprise the stiff leg issue is much worse now, and now present 100% of the time. It took a few days for the leg issues to return. My feet hit the ground quite hard and my forefoot always hits before my heel which can get quite uncomfortable. My walking speed is pretty good considering the awkward gait and I don't shuffle. My balance particularly at night on uneven ground is not that good. My left leg is about 50% worse than my right. Also to my surprise, my finger tapping this time didn't demonstrate any parkinsonism which it has in all previous appointments. I'm not overly sure what it is that you look for in this test but I was told it was normal this time. While off Azilect, I find that I wake up 5 to 10 times per night and early in the night swing my arms in tune with my dreams. I also shake a bit off Azilect but it is both arms and being in sustained positions, and I think it is from the stiffness tiring them slightly more than a typical parkinson style tremor. The last neurologist who is not 100% sure still advised to stay on the Azilect or Pramipexole so that I don't cause other issues with hips, knees etc. I have now started on Azilect again which has returned me to normal walking after a few days. Sleep is improved and shaking improved. I used immediate release Pramipexole while waiting for Azilect to work. When I take Pramipexole it is completely obvious to me that my lower back, tops of my thighs, and left side of my face relaxes. I can feel it happen quite obviously. A few questions I would really appreciate your opinion on if you have time: Is it possible that my finger tapping could fluctuate? Is it normal that it could appear normal this last time but not every other time I have seen a neurologist? In your opinion, if I possibly don't have PD, which medication would be a less likely to cause any long term harm? Azilect or Pramipexole? I have had a few occasions where I have had to take a small amount of Pramipexole in addition to the Azilect as my stiffness has returned. This has only been if I have been unusually stressed or sick. Is there any other obvious illnesses that you think I should have investigated based on the above. I know the tablets help quite obviously, and I know my motor control/stiffness/balance has gotten worse over the last year, but I don't feel I demonstrate any other Parkinsons signs very convincingly. Your time is very much appreciate, and I hope you can understand my hesitance to accept this just yet.
  10. Hi I am in my low 30's and have had one neurologist diagnose me with parkinsons and one saying I have parkinsonism signs but he is not 100% convinced it is PD. Even I don't think I fit the criteria good enough so I would be interested in hearing alternative ideas. I have only two issues that have been taking me to the doctor the past 8 years, the first being a persistent tightness in my left shoulder which has been very slowly getting worse and affecting my neck and arm. The second neuro isn't 100% convinced this is related. The second issue is the one that landed at me at the neurologist, and is the most bothersome, being legs that significantly tighten up when walking. It started out being intermittent and then progressed to happening full time over 2 years or so, and is now at the stage where I can only walk 20 or 30 steps before the cramp forces me to stop. Around the same time my legs started having issues with tightness, I started having non-stop fasciculations everywhere (feet, legs, arms stomach, face etc). The fasciculations don't particularly bother me, but the neurologist insisted on a nerve conduction study which were normal. Muscle relaxers like Norgesic and Baclofen have made no difference (although the tend to help with sleeping), but completely to my surprise, pramixperole extended release gave me a full recovery after 6 hours of taking the first 0.75mg dose, and seems to work for about 28 hours. It made me feel slightly sick, and messed with my sleep after a few weeks, so the neurologist switched me to Azilect, which took about 3 days to start working, but also gives my leg issues a massive improvement. I have been on Azilect for 2 months and the leg issues are staying away, and don't seem to have any significant side effects. I also tried a non-slow release pramixperole 0.25mg which kicks in much quicker, but only has an effect for 2 hours or less, and then my legs go completely back to being stiff again. I understand these two tablets are aimed at parkinsons, but I feel like this is clouding the judgement of the neurologists. My only parkinson like symptoms that the neurologists have pointed out are a left hand that doesn't do well in a finger tapping test, stiffness and response to these tablets. I don't have a tremor, normal MRI, normal nerve conduction study, previous B12 shots for slightly low B12 which has remained normal, and take ongoing low doses of thyroxine for mild hypothyroidism which has remained normal. I'd really appreciate any feedback or alternative ideas to ask the neurologists about. Thanks for your time.
  11. cldm

    Help with questionable diagnosis

    Thanks very much for taking the time to reply - It is much appreciated. I'll report back in time after I get another opinion off medication.
  12. cldm

    Opinions on diagnosis

    Thanks very much for your replies everyone. LAD - to answer your query both of the neurologists I have seen are movement disorder specialists, but like I say, one diagnosed parkinsons and the other parkinsonism and is looking/waiting for a cause. I was really hoping the second neurologist would come up with a complete alternative to explore, but he hasn't, so I might try a third. otolorin & DaveN - A DAT scan sounds like a good idea. I have a follow up early in the new year so I will speak to the neurologist about it then. Some mild form of DRD sounds likely to me too and I spoke to the neuro about it, but he tells me that I would see twisting of the limbs. Like I say though, a very mild form of DRD fits better in my mind. joeideal - it does sound similar except without meds, my leg stiffness is full time these days. My cramps don't sound as severe however because all I need to do is stop moving and the cramp will go. I actually think my leg issues result from a really tight lower left back, and the meds are actually helping that which in turn fixes my legs, but not sure if that is realistic. I also swing around in my sleep. On bad nights I sleep in the spare room, because I worry about swinging my arms into my wife, but that isn't that frequent. Luckily I don't suffer depression. My mood and motivation feels better off medication but who knows what that means. Good luck in figuring out what is going on. I am really keen to hear how you get on with your scan etc. Thanks again everyone.
  13. cldm

    Opinions on diagnosis

    yep - both legs are similar in tightness with the left only slightly worse, and both get the cramping while walking.
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