floridagirl
08-01-2001, 10:24 PM
I am 33 female and have been living with strange symptoms for several months. Tremors, twitching memorey loss, severe impared balance, loss of coordination, abilty to walk and function normal, write, type, swallow, bowels slow, severe insomnia like I am being tazered, shimmery vision and difficulty with urination.
There is a history of Parkinson in my family on my Paternal side. Can anyone offer suggestions?Answers? The doc says it is Psycological and sends me round and round to different specialists from Fresno to Stanford, cant figure it out.
Hopefull
There is a history of Parkinson in my family on my Paternal side. Can anyone offer suggestions?Answers? The doc says it is Psycological and sends me round and round to different specialists from Fresno to Stanford, cant figure it out.
Hopefull
Sponsor
Googy
08-02-2001, 06:30 PM
Hi Ca flori girl,
I guess that means you have just moved to Ca from F lorida.I echo Bernies words,(Thanks Bernie for the nice remark I enjoy seeing your informative posts.) Flori you mentioned Stanford.Check to see if they have a Movement Disorder Specialist.I feel sure they must.If not go to the Parkinson site that Bernie posted.With meds you will feel like a new person.you arent getting the right advice from the Dr.s you mentioned.
Love,
Googy
I guess that means you have just moved to Ca from F lorida.I echo Bernies words,(Thanks Bernie for the nice remark I enjoy seeing your informative posts.) Flori you mentioned Stanford.Check to see if they have a Movement Disorder Specialist.I feel sure they must.If not go to the Parkinson site that Bernie posted.With meds you will feel like a new person.you arent getting the right advice from the Dr.s you mentioned.
Love,
Googy
Carrotcake
08-02-2001, 10:43 PM
P.S. The NPF site is www.parkinson.org (http://www.parkinson.org) and not www.parkinson.com. (http://www.parkinson.com.) Hope this helps. As Bernie suggests, write to Dr. Lieberman at this site and ask him for a recommendation for a good MDS in your area. They will be the best at diagnosing you properly.
Good Luck !
Good Luck !
Pelicangirl
08-07-2001, 01:43 PM
Hi Floridagirl,
I agree with all of the above, expecially Bernie, who said to get yourself to a movement disorder specialist.
That would be the best present you could give yourself.
Pelicangirl (aka Ruth, also from CA).
I agree with all of the above, expecially Bernie, who said to get yourself to a movement disorder specialist.
That would be the best present you could give yourself.
Pelicangirl (aka Ruth, also from CA).
floridagirl
08-08-2001, 05:48 PM
Thanks to you all for your suggestions it is becoming a really hard battle. I went to Stanford yesterday. The Primary doc looked at me strangely and suggested that I try elavil and see a Psyc! I told her to review my chart that I have reactions to Elavil! She kept looking at her watch and said good luck then said well lets choose three things to help you with today. Migraine, vision, twitching. Ikay I replied. I asked to see a Opthamologist due to the darkening vision-No. Cardiologist-due to the buldging veins and chest pain.-No, and discontinue any Imatrex or meds for the migraine. I thought that Stanford was the top notch here in Sunny Calif. Apparently not. Mean while I will look for a Movement specialist
:))
:))
arose
08-09-2001, 02:32 AM
I've seen Lieberman. Highly regarded by who?
Caring
08-09-2001, 04:47 AM
When you mentioned darkening vision, are you talking about temporary spells where everything becomes dark, then your vision comes back, or is this a constant thing for you?
I've had this thing where it's like someone is dimming the lights down to almost no light, then the lights slowly come back on again. It's only happened occasionally, and only for a few seconds, but I am curious if this is what you are having.
By the way, I have not been diagnosed with Parkinson's yet, but have the tremors which I have to take Sinemet (generic) for, and have some other symptoms similar to Parkinson's, though I was told that I do not have SOME of the key signs (but I need further observation to make an accurate diagnosis.) What I can gather from this board so far, is that if I don't have Parkinson's, then I've got a close cousin of Parkinson's.
All of your symptoms are similar to mine, though I have many others, which I am finding out are also common in Parkinson's patients.
You should make a list of anything that is unusual to you. Skin crawling, stumbling over, dropping things, etc. This way, when you see your doctor, you will be able to have a written list to tell them about.
Maybe you can even write down specific instances when this happens, as a sort of "proof" that you are not just imagining these things, but that you actually are experiencing REAL occasions where strange things are happening.
Example would be (not that this happened to me) but, fell on floor when trying to get out of bed this morning, leg was too stiff to move. Was talking to my friend, and suddenly could not speak properly, this went on for half an hour, slurring. Forgot how to get to work this morning. Was relaxing on couch, hand started shaking so bad I spilled my tea all over me.
You get the idea. It might help to give examples. Just a thought. Sometimes doctors are almost like attorneys...if all you have are generalizations, then your case is weak--specifics are important to some doctors.
Hope this will be helpful. I hope you find a doctor who is open minded enough to explore the possibility that something is wrong more than just psychological.
At your young age, it's a good chance this was caused by some chemical poisoning. This is what happened to me, and some of the other people here too have the same theories about what happened to them.
He he he, look at me. I was just going to make some quick suggestion. http://www.healthboards.com/ubb/dizzy.gif
Take Care now.
Sincerely,
Caring
I've had this thing where it's like someone is dimming the lights down to almost no light, then the lights slowly come back on again. It's only happened occasionally, and only for a few seconds, but I am curious if this is what you are having.
By the way, I have not been diagnosed with Parkinson's yet, but have the tremors which I have to take Sinemet (generic) for, and have some other symptoms similar to Parkinson's, though I was told that I do not have SOME of the key signs (but I need further observation to make an accurate diagnosis.) What I can gather from this board so far, is that if I don't have Parkinson's, then I've got a close cousin of Parkinson's.
All of your symptoms are similar to mine, though I have many others, which I am finding out are also common in Parkinson's patients.
You should make a list of anything that is unusual to you. Skin crawling, stumbling over, dropping things, etc. This way, when you see your doctor, you will be able to have a written list to tell them about.
Maybe you can even write down specific instances when this happens, as a sort of "proof" that you are not just imagining these things, but that you actually are experiencing REAL occasions where strange things are happening.
Example would be (not that this happened to me) but, fell on floor when trying to get out of bed this morning, leg was too stiff to move. Was talking to my friend, and suddenly could not speak properly, this went on for half an hour, slurring. Forgot how to get to work this morning. Was relaxing on couch, hand started shaking so bad I spilled my tea all over me.
You get the idea. It might help to give examples. Just a thought. Sometimes doctors are almost like attorneys...if all you have are generalizations, then your case is weak--specifics are important to some doctors.
Hope this will be helpful. I hope you find a doctor who is open minded enough to explore the possibility that something is wrong more than just psychological.
At your young age, it's a good chance this was caused by some chemical poisoning. This is what happened to me, and some of the other people here too have the same theories about what happened to them.
He he he, look at me. I was just going to make some quick suggestion. http://www.healthboards.com/ubb/dizzy.gif
Take Care now.
Sincerely,
Caring
arose
08-09-2001, 01:10 PM
I went to one of the so-called National Parkinson Foundation Centers of Excellence. There was no research, the doctor there was not a movement disorders specialist. There was no center, I would hardly call it excellent. This seems misleading to me.
Googy
08-09-2001, 06:11 PM
That is to bad. I'm so sorry. Ruth will tell you about her Movement Disorder Specialist.Many have on this BB.I cannot understand why this place you went to didn,t. With my husband it was a long time ago.Our Neuro sent us as he could no longer do anything for him, he couldnt walk at all,the meds quit.We just went to him every week for six weeks.He was the one who got him going again.We then when back to our old friend the Neuro and stayed with him for many years,till we moved here.
Pelicangirl
08-15-2001, 02:55 AM
Arose,
I have a Movement Disorder Specialist that I have been seeing for about 4 years now. What a change!! My regular neuro told me, after 9 years of treating me with Parkinson's meds, that he didn't think I had PD!!!
Then he asked if I'd mind seeing an MDS. I didn't even know there was such a thing!!
Well, I saw the MDS and she looked at me for about 5 minutes and said, "What on earth did he think you had?" Unfortunately she moved, but I found another one who is just as good and closer to home. He sent me to UCLA for DBS-STN and I've never felt better!! It's so wonderful not to take all those meds and feel so good. I know it's not a cure, but I'm going to enjoy it for as long as it lasts.
Anyway, the point of all this is, I suppose there are MDS's that aren't as good as some others, and you probably have to look aound to find the right one, but I've found 2 who are great and I'm sure there are more out there like that.
Pelicangirl (aka Ruth)
I have a Movement Disorder Specialist that I have been seeing for about 4 years now. What a change!! My regular neuro told me, after 9 years of treating me with Parkinson's meds, that he didn't think I had PD!!!
Then he asked if I'd mind seeing an MDS. I didn't even know there was such a thing!!
Well, I saw the MDS and she looked at me for about 5 minutes and said, "What on earth did he think you had?" Unfortunately she moved, but I found another one who is just as good and closer to home. He sent me to UCLA for DBS-STN and I've never felt better!! It's so wonderful not to take all those meds and feel so good. I know it's not a cure, but I'm going to enjoy it for as long as it lasts.
Anyway, the point of all this is, I suppose there are MDS's that aren't as good as some others, and you probably have to look aound to find the right one, but I've found 2 who are great and I'm sure there are more out there like that.
Pelicangirl (aka Ruth)
Bruce
08-22-2001, 10:28 AM
I have the follwing symptoms that you listed and I have Parkinson's. memory loss, impaired balance, loss of coordination, slow writing, typing, swallowing, constipation, insomnia.
Their seems to be a prejudice among many physicians, diagnosing Parkinson's on a 33 year old patient. I have read it many times on the Parkinson boards.
Their is one way you can confirm you have Parkinsons. The next physcian you see, if he/she doubts you have pd, ask for one prescription Of Sinemet and faithfully take the drug for 30days. I if you experience a dramatic improvement in your symptomd, it is very likely you have pd. If their is no change in your symptoms then it is not likely you have pd.
Bruce
Their seems to be a prejudice among many physicians, diagnosing Parkinson's on a 33 year old patient. I have read it many times on the Parkinson boards.
Their is one way you can confirm you have Parkinsons. The next physcian you see, if he/she doubts you have pd, ask for one prescription Of Sinemet and faithfully take the drug for 30days. I if you experience a dramatic improvement in your symptomd, it is very likely you have pd. If their is no change in your symptoms then it is not likely you have pd.
Bruce