dolphingirl
11-05-2001, 03:21 PM
Hi, I am new to the group. I was diagnosed with PD about 2 years ago. I just wanted to ask if any one else has a problem with severe rapid muscle twitching in their arms and legs? I just feel like my symptoms seem pretty progressed for the time I have been diagnosed. I am currently going to speech therapy 3 times a week for dysphagia. I have already had aspiration pneumonia once. I have to walk with a cane because I am so unsteady and fall at least once a day. I have alot of difficulty breathing and swallowing. I am only 36 years old and have a 12 year old and a 5 year old and just recently became a single parent so I guess I am trying to find out if these things seem to be consistent with PD or if I need to seek another opinion. It just seems like I am progressing much more rapidly than all the information I have read indicates. I have been on Sinemet CR 50/200 and Requip 4mg both 3 times a day but they seem to have no effect at all other than to make me tired and nauseated. Any help or suggestions would be great. I am about at the end of my rope and don't know which way to turn. My email address is dolphin2001xx@aol.com
Thanks
Kim
Thanks
Kim
Sponsor
Pelicangirl
11-05-2001, 09:23 PM
Hi Kim,
I think you need to get a second opinion by a Movement Disorder Specialist. If Sinemet and Requip aren't working for you, the likelihood is you don't have Parkinson's. Sinemet is the "gold standard" for PD, meaning that if it works you have it, if it doesn't, you don't. Everyone is different, but that's just a general test. But you do have something, and you should find out what it is. Even if it is PD, there are other medications that can be taken, although not quite as effective.
I recently had DBS-STN surgery, which is also another option, especially at your age. But first you must find out what you have. Get that second opinion!!!
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Pelicangirl (aka Ruth)
I think you need to get a second opinion by a Movement Disorder Specialist. If Sinemet and Requip aren't working for you, the likelihood is you don't have Parkinson's. Sinemet is the "gold standard" for PD, meaning that if it works you have it, if it doesn't, you don't. Everyone is different, but that's just a general test. But you do have something, and you should find out what it is. Even if it is PD, there are other medications that can be taken, although not quite as effective.
I recently had DBS-STN surgery, which is also another option, especially at your age. But first you must find out what you have. Get that second opinion!!!
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Pelicangirl (aka Ruth)
Googy
11-05-2001, 11:49 PM
Hi Dolphin,
I agree with Ruth see a MDS.What you are going through is not common ,but then everyone is different.The Sinemet should help you if it is PD.But there are side effects to everything.Get another opinion.
Good luck and welcome to this BB,keep us posted.
Googy
I agree with Ruth see a MDS.What you are going through is not common ,but then everyone is different.The Sinemet should help you if it is PD.But there are side effects to everything.Get another opinion.
Good luck and welcome to this BB,keep us posted.
Googy
SANDY SUE
11-06-2001, 03:42 AM
Welcome to our group, Kim. Both Googy and Ruth are our resident "almost doctors" and what they say is true. Many of the symptoms you have I also have, including difficulty in swallowing, speech, and being tired. You should get that second opinion from a movement disorders neurologist. You should also do as much reading as possible on PD and similar disorders (I hate that word "Disease"). You can get an internet 2nd opinion from Dr. Lieberman at www.parkinson.org. (http://www.parkinson.org.)
He might even be able to recommend a doctor for you to see in your area. And one last comment - stress and PD go together like oil and water. Stress itself can make one mentally, as well as physically, tired. I, too, wish you luck in your search. Just remember, a cure IS going to come, certainly in your lifetime. Keep us informed.
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He might even be able to recommend a doctor for you to see in your area. And one last comment - stress and PD go together like oil and water. Stress itself can make one mentally, as well as physically, tired. I, too, wish you luck in your search. Just remember, a cure IS going to come, certainly in your lifetime. Keep us informed.
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dolphingirl
11-06-2001, 08:17 AM
Thanks so much to everyone for your replies. The sinemet did work at first but once my neuro went down on the dosage because of other problems I feel like it doeson't help at all. Unfortunately I also have Bipolar Disorder, Fibromyalgia, degenerative disc disease and diabetes plus I have been under a tremendous amount of stress with my divorce and having to move back in with my parents. I think that in the back of my mind I have been frightened because the twithching and swallowing difficulty can also be signs of ALS and I seem to have alot of the symptoms. I have to admit that PD sucks but given the lesser of two evils I would take PD over ALS. I just try to stay active and keep my mind off of things. Anyones suggestions for relieving stress would be most welcome.
Kim
Kim
Bruce
11-06-2001, 04:31 PM
You have received some good advice from people I know have a lot of experience with Parkinson's. I have pd and we have some symptoms in common. The poor balance, difficulty swallowing and fatigue are some of my symptoms.
I suspect your dose of Sinemet and Requip may not be high enough to relieve your symptoms. I am trying to switch from Parlodel to Requip and, believe me, it isn't easy. I am up and down like a yo yo. So the dose and the time between doses is critcal.
I am concerned about your falling and maybe you should consider buying walker. I have had some falls in the past and now have to use a walker.
The aspiration pneumonia could be lethal. I have periods when I vomit everything I eat or drink. I try to eat slowly and chew my food longer.
Every pd patient progresses at a different rate and it is not predictable.
As for taking pd drugs, everyone has to weigh the risks (side effects) vs. the benefits and all drugs have side effects. Bruce
I suspect your dose of Sinemet and Requip may not be high enough to relieve your symptoms. I am trying to switch from Parlodel to Requip and, believe me, it isn't easy. I am up and down like a yo yo. So the dose and the time between doses is critcal.
I am concerned about your falling and maybe you should consider buying walker. I have had some falls in the past and now have to use a walker.
The aspiration pneumonia could be lethal. I have periods when I vomit everything I eat or drink. I try to eat slowly and chew my food longer.
Every pd patient progresses at a different rate and it is not predictable.
As for taking pd drugs, everyone has to weigh the risks (side effects) vs. the benefits and all drugs have side effects. Bruce
dolphingirl
11-06-2001, 04:49 PM
Bruce,
thanks so much for your info. I think that we may have emailed back and forth some when I was on the previous message board. Are you from Indiana? I think that you are right as far as the walker being something that I may have to face in the very near future, it has been so hard for me to adjust to all the changes, the speech therapy, different way of eating and walking, bathing, etc. that I have just not wanted to face that. My boys are only 12 and 5 so I want to try to sray mobile as long as possible. I am in the middle of a seperation right now and living with my parents so I know the stress of that has exacerbated my symptoms. I am getting ready to meet my husband in a few hours to try to talk and see if we can work things out. Everyone say a little prayer for me and hope that I can convince him. Thanks so much for everyones great advice.
Kim
thanks so much for your info. I think that we may have emailed back and forth some when I was on the previous message board. Are you from Indiana? I think that you are right as far as the walker being something that I may have to face in the very near future, it has been so hard for me to adjust to all the changes, the speech therapy, different way of eating and walking, bathing, etc. that I have just not wanted to face that. My boys are only 12 and 5 so I want to try to sray mobile as long as possible. I am in the middle of a seperation right now and living with my parents so I know the stress of that has exacerbated my symptoms. I am getting ready to meet my husband in a few hours to try to talk and see if we can work things out. Everyone say a little prayer for me and hope that I can convince him. Thanks so much for everyones great advice.
Kim
Googy
11-06-2001, 06:46 PM
Hang in there Kim,our thoughts and prayers are with you.
Love,
Googy
Love,
Googy
Bruce
11-06-2001, 09:39 PM
Kim, I do remember your name and exchanging messages. That is a miracle that I remembered you. Yes, I live in Imdiana and I am not doing to great either.
I am sure you are in a very stressful situation. I have been there when I was still working. I don't have a cure for stress, except I can promise you we will be praying for you and your children. You make my problems very small in comparison.
If you are on medicare, they will pay for a walker. One desigened for pd pts. is the U step. It won't work to well on unpaved ground. Bruce
I am sure you are in a very stressful situation. I have been there when I was still working. I don't have a cure for stress, except I can promise you we will be praying for you and your children. You make my problems very small in comparison.
If you are on medicare, they will pay for a walker. One desigened for pd pts. is the U step. It won't work to well on unpaved ground. Bruce
dolphingirl
11-07-2001, 10:20 AM
Thanks so much Googy and Bruce for your replies. It really helps to have someone guide me along this unknown territory. Unfortunately, my talk with my husband did not go as planned and he is going through with the divorce. Maybe it is for the best. I have enough worries without being saddled living with someone who doesn't care about me.
Bruce, thanks for the info about the walker. My soon to be sister in law works in the dedical supply store her mother owns so I will see if she can get me some info.
I also wanted to ask if anyone else uses any aid to help them at home as far as eating, bathing, turning over in bed, etc. I know there are several out there but didn't know which ones were actually helpful.
Hope everyone is doing well.
Kim
Bruce, thanks for the info about the walker. My soon to be sister in law works in the dedical supply store her mother owns so I will see if she can get me some info.
I also wanted to ask if anyone else uses any aid to help them at home as far as eating, bathing, turning over in bed, etc. I know there are several out there but didn't know which ones were actually helpful.
Hope everyone is doing well.
Kim
Bernie812
11-07-2001, 11:36 PM
Hi to all,
Kim,
I can't help but add my two cents here.
Seeing an MDS to get a propper diagnosis and get the right meds & right course of treatment is all important. They have more experience with PD and are usually more in-tune with the latest treatments & studies. Please don't ignore this advice from the others. Even if it's just for a second opinion, you should see a specialist (second opinions should be routine anyway). Be good to yourself.....you deserve it...go see the best.
Did you post that you're from Georgia. Anywhere near Atlanta? I believe they have some good PD centers there.
Good Luck - Bernie812
Kim,
I can't help but add my two cents here.
Seeing an MDS to get a propper diagnosis and get the right meds & right course of treatment is all important. They have more experience with PD and are usually more in-tune with the latest treatments & studies. Please don't ignore this advice from the others. Even if it's just for a second opinion, you should see a specialist (second opinions should be routine anyway). Be good to yourself.....you deserve it...go see the best.
Did you post that you're from Georgia. Anywhere near Atlanta? I believe they have some good PD centers there.
Good Luck - Bernie812
Bruce
11-07-2001, 11:53 PM
Satin or silk sheets, anything with a slick surface , nylon helps to wear to bed. Keep pills within reach to help get out of bed.
Arm rests on commode for support standing up. Medical supply store for bench to sit on in shower and one to sit on outside of shower.
Lots o paper towells to clean up floor after eating. That's about all I can come up with at the moment.
Arm rests on commode for support standing up. Medical supply store for bench to sit on in shower and one to sit on outside of shower.
Lots o paper towells to clean up floor after eating. That's about all I can come up with at the moment.
dolphingirl
11-08-2001, 06:37 PM
Bruce and Bernie, Thanks so much for the tips. I am about 25 miles west of Atlanta and I am thinking of trying Emory University. My Medicare coverage begins in December so I am not sure if that is going to be easier than my current HMO or not as far as choosing my physician with no referral. I will keep you posted as to what is going on.
Kim
Kim
Bruce
11-08-2001, 10:14 PM
Kim, good luck to you. Atlanta is a great city for medical treatment and medicare isn't bad unless you are thinkimg about having the DBS surgery. Medicare covers it in 27 states and Indiana is not one of them. You might be a good candidate for the surgery. The surgery is really the easy part. The adjustments are the pits.
Bruce
Bruce
md1817
11-09-2001, 09:02 PM
The Neurology Department at Emory University is excellent in both clinical care and basic research, especially for movement disorders.
speck
11-09-2001, 09:39 PM
try asking your specialist about parkinsonism.
thats one of five diseases but is not well know.
it could be that you have a certain type of pd which may respond to certain drugs
good luck
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take care!!
thats one of five diseases but is not well know.
it could be that you have a certain type of pd which may respond to certain drugs
good luck
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take care!!