I used to have CFS but now for a while the doctors have conversion disorder which I don't think is the right diagnosis Just would like to say Happy New Year I'm am going to see someone about my headaches I've had them for a more than a year now they are really getting on my nerves They are recommeding a CT scan but my guardian wanted a MRI scan but you never always get what you what :@
Hi and my first time commenting on one of your videos. I do wish you well and am just sorry to see you with so many neurological problems and suffering as shared in greater or lesser degree by many others unfortunately.I would have thought that MSA was a distinct possibility. Along with M.E patients,a neurologically mediated disease, central damage is a possibility. I would love to know what a neurotransmitter test would reveal if ever performed.e.g Dopamine production normal?..I suspect not.
Hi Sly1958. I haven't had any testing for Dopamine etc that i know of. All tests into my neurological problems have stoped. i think it will take a major deterioration to get a neurologist to reassess me. The diabetes I have been diagnosed with MAY open up further investigations. I am having to see a podiatrist related to my diabetes. I have neuropathy/numbness in my feet that has never been properly investigated. I am hoping her findings may change that.
Hi again and thanks for your reply. Your comments reiterate the terrible lack of care,proper testing and research so common to many perhaps diagnosed at one stage with M.E..no thanks to the psychiatric lobby of course. There are in my view many intertwinining symptoms, the direct result of cellular/neuro degeneration that give rise to symptomology of parkinsonism,M.S, M.E etc. No surprise that neurotransmitter status for example has not been investigated,too many patients get little real 'care'
Glad to see your making the videos again! I hope you can get to the bottom of whats wrong, and at lease get some piece of mind, and even get some real help. Keep plugging away, and don't give up! I wish you so much good vibes for the new year.. your strength is amazing, I pray for you and hope this can get sorted out. All the best for 2010. Very best wishes Mark.
The response you have with your arms is very similar to mine, that only occur in a vertical position.
Wishing you a happy New Year. I finally gave up on a diagnosis and settled for MSA. I am now on pallatiave care. I think many of my symptoms are milder because I am becoming very much stiffer. Any way you look at this, once the cell loss begins to occur, it doesn't stop. We have new hope in stem cell research. In my prayers,
A happy New Year to you Sami. You are in my prayers too. I am hoping that I don't have MSA, although when I look at you videos I see so many similarities. One thing seems to be certain is whatever it is I have it isn't going away, and the possibilities for effective treatment are not to good at the moment. It seems to me that for most neurological illnesses, the only thing that can be offered is disease management, there are very few cures.
Nice to hear from you again Paul and sounds like this Neuropsyche did a much better job of examining you than the previous Neuro Drs you mentioned. I think ME as a diagnosis is a bit of a dead end (treatment wise) but MS is worth exploring cos' it can affect the eyes and cause blindness as well- might be a coincidence but still worth checking. Surprised that she didn't think it was parkinsons. Hope this leads to some answers (& treatment) for you:)
It is good to have some one confirm that there is something objectively wrong with the function of my brain. She also said that me executive functioning is impaired. What she couldn't say is what is causing it. I have always thought my symptoms seem to point towards ME, MS or Parkinsonism of some sort. She seemed to think there would have been other cognitive problems had it been PD. However, someone has contacted me who has Multi system Atrophy, and her symptoms look suspiciously like mine.
I used to have CFS but now for a while the doctors have conversion disorder which I don't think is the right diagnosis Just would like to say Happy New Year I'm am going to see someone about my headaches I've had them for a more than a year now they are really getting on my nerves They are recommeding a CT scan but my guardian wanted a MRI scan but you never always get what you what :@
XxLi3rose123xX 2 years ago
Hi and my first time commenting on one of your videos. I do wish you well and am just sorry to see you with so many neurological problems and suffering as shared in greater or lesser degree by many others unfortunately.I would have thought that MSA was a distinct possibility. Along with M.E patients,a neurologically mediated disease, central damage is a possibility. I would love to know what a neurotransmitter test would reveal if ever performed.e.g Dopamine production normal?..I suspect not.
sly1958 2 years ago
Hi Sly1958. I haven't had any testing for Dopamine etc that i know of. All tests into my neurological problems have stoped. i think it will take a major deterioration to get a neurologist to reassess me. The diabetes I have been diagnosed with MAY open up further investigations. I am having to see a podiatrist related to my diabetes. I have neuropathy/numbness in my feet that has never been properly investigated. I am hoping her findings may change that.
kaazoom 2 years ago
Hi again and thanks for your reply. Your comments reiterate the terrible lack of care,proper testing and research so common to many perhaps diagnosed at one stage with M.E..no thanks to the psychiatric lobby of course. There are in my view many intertwinining symptoms, the direct result of cellular/neuro degeneration that give rise to symptomology of parkinsonism,M.S, M.E etc. No surprise that neurotransmitter status for example has not been investigated,too many patients get little real 'care'
sly1958 2 years ago
Hi Paul,
Glad to see your making the videos again! I hope you can get to the bottom of whats wrong, and at lease get some piece of mind, and even get some real help. Keep plugging away, and don't give up! I wish you so much good vibes for the new year.. your strength is amazing, I pray for you and hope this can get sorted out. All the best for 2010. Very best wishes Mark.
semisonicTV 2 years ago
The response you have with your arms is very similar to mine, that only occur in a vertical position.
Wishing you a happy New Year. I finally gave up on a diagnosis and settled for MSA. I am now on pallatiave care. I think many of my symptoms are milder because I am becoming very much stiffer. Any way you look at this, once the cell loss begins to occur, it doesn't stop. We have new hope in stem cell research. In my prayers,
Sami
SamiBebe2 2 years ago
A happy New Year to you Sami. You are in my prayers too. I am hoping that I don't have MSA, although when I look at you videos I see so many similarities. One thing seems to be certain is whatever it is I have it isn't going away, and the possibilities for effective treatment are not to good at the moment. It seems to me that for most neurological illnesses, the only thing that can be offered is disease management, there are very few cures.
kaazoom 2 years ago
Nice to hear from you again Paul and sounds like this Neuropsyche did a much better job of examining you than the previous Neuro Drs you mentioned. I think ME as a diagnosis is a bit of a dead end (treatment wise) but MS is worth exploring cos' it can affect the eyes and cause blindness as well- might be a coincidence but still worth checking. Surprised that she didn't think it was parkinsons. Hope this leads to some answers (& treatment) for you:)
neelubird 2 years ago
It is good to have some one confirm that there is something objectively wrong with the function of my brain. She also said that me executive functioning is impaired. What she couldn't say is what is causing it. I have always thought my symptoms seem to point towards ME, MS or Parkinsonism of some sort. She seemed to think there would have been other cognitive problems had it been PD. However, someone has contacted me who has Multi system Atrophy, and her symptoms look suspiciously like mine.
kaazoom 2 years ago