Posted by Carole
on November 19, 2000 at 01:51:07:
In Reply to: Re: early onset? posted by Googy on November 19, 2000 at 00:52:33:
: : : Hi Leathan,
: There will be an answer.Follow Bruce's advice.Keep in touch with us,we do have many young PWP's on this board,i know they will help you also.
: : : I experience a severe mental state which makes me feel extremely basic and hence very frightened.
: : : It is very hard to describe. I feel confused , disorientated , muted , very unintelligent , forgetful , slow , and not surprisingly a bit low.
: : : It has , in short , devestated my life. I am in my early 20's. I have a severe concentration problem which has now impacted severely on me.
: : : My mind just appears to stop. At least in the past this would fluctuate - now I have not had any significant relief from it in a long time and I feel very basic.
: : :
: : : I experience a shake in my right hand when putting it on a table. It's become more or less guaranteed that more often than not it will shake when relaxed. Also have a head quiver - again when it is relaxed , i.e. - lying down.
: : : General body shake can occur also.
: : : Over and above this , extreme fatigue also renders me to a very basic state. I also get sleep paralysis. But the fatigue is very intrusive.. it is very frightening and shocking. It just comes on - but there is also a general one also - it requires planning out activities in advance.
: : : It can feel like your insides have been struck by lightening. Renders to a very basic state.
: : : Can also get lower leg pain which forces me to stop walking. It's as if the lactic acid builds up demonizingly rapidly..
: : : are there any young-onset-people out there who were diagnosed with ME/CFS and later turned out to have early pd?
: : : the symptoms are terrifying at the moment and have a personal , physical , social , all aspect of life impact.. - shocking stuff,
: : : it is very embarrassing also , plus at some times when i feel okay people ask me if i am okay , and i have recently read about this masked face business. I don't know - what is this? Does one's face feel tight or something?
: : : all i want is some medication or something , I have a CFS/ME diagnosis , but am now starting to question it , and I am not prepared to have to go through the torment of bad attitudes from doctors saying it's all in one's mind.. - that is very damaging. even with a cfs/me diagnosis they are within their right not to accept the diagnosis even if it's been made. it was too exhausting that diagnosed!!
: : : thanks
: : : Leathan
: : : ps : anyone's email address for exchange appreciated..
: : Leathann, You have to many symptoms for me to give you a good answer to your questions. I am sorry to see the misery you are experiencing. You definitely should see a neurologist who specializes in movement disorders. Go to the NPF web site (parkinson,org) and sign up for the "ask the doctor" forum. Post everything you have here on Dr. Lieberman's Q and A. You will receive an answer from the doctor in your e-mail within 24 hours. Dr. Lieberman is a Parkinson specialist and he not only gives great answers, but is also a compassionate man. He frequently resommends the best doctors throughout the country. He is the best source on movement disorders that I have ever encountered. If you want to e-mail me, my address is Rblandess@aol,com. Try not to worry or anxious, because it could make your symptoms worse. Take care. Bruce
I can imagaine you ARE very distressed by these symptoms, especially if you are not getting satisfactory medical help. One of my sister's friends was told for years that she had CFS, and it later turned out she had been suffering Parkinson's Disease all along, so don't give up. One of my first symptoms, severe enough to get MY attention, was a sudden fatigue. I sort of collapsed into my shopping cart one afternoon and could barely get to the car. That was scarey. I was given a catscan and told I did NOT have PD or it would have shown up! (not true) I was then put thru a glucose tolerance test, all day, and felt like a pin-cushion and victim of Dracula. The fatigue from that test was horrible. I was told I was hypoglycemic (I am borderline) and that was the cause of my fatigue and shaking. I was in my late 20s by then. It took years for me to be diagnosed differently. Luckily, things have changed and there are specialists in Parkinson's and other movement disorders now. The internet has opened up a whole new world, so do as Bruce suggests and find the right kind of neurologist to get more definitive answers. Bless your heart!