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cldm

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  1. 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.
  2. 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.
  3. 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.
  4. Opinions on diagnosis

    yep - both legs are similar in tightness with the left only slightly worse, and both get the cramping while walking.
  5. 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.
  6. 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.
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