I am in the diagnosing stage for the cause of my muscle cramps, balance problems,stiffness and mild tremor. I have been on Mirapex for almost 3 weeks. It has helped,but only for about 3-4 hours after taking it. I am on a very low dose of .50 at night and .25 morning and afternoon. My symptoms do not seem real typical to me for PD. They are not one sided. I did start having right hip pain several years ago that I assumed was athritis. This then began in the knees and shoulders and lower back, sometimes making it verry hard to turn over at night. I finally saw a reumatoligist last Nov.. He said that it was not athritis according to blood tests and x rays. I then started having these feet and leg and hand cramps in Jan. This started the search for what was really wrong. MS was ruled out. My tremor does not seem to be the PD tremor I see described. The MDS said that I have a tongue temor. I did not even know this. It is very temulous most of the time. Maybe this is why I have bit my tongue often, even in my sleep sometimes! My hand tremor is only noticable when I'm holding a paper or the telephone, etc.
I'm 46. Some days I know this has to be PD. Other days I think no way! Maybe just stress( I do have 12 children(9 youngest adopted), eight at home ages 6-18) and sleep depravation from the aches and muscle cramps. Many of my symptoms could easily be stress related, short term memory loss, inability to focus on more than one thing at a time,clumsy hands, ect.
Who else has had this progression of symptoms? How unusual is it to have the same symptoms pretty much on both sides before even being diagnosed? From what I've read this usually happens much latter. Thank you and blessings, Sharon

PS, should I ask for a higher dose of Mirapex? How much help do you usually get from Mirapex? If you have PD does it completely control the symptoms if you are on the right dose?

[This message has been edited by mom212 (edited 09-12-2003).]

Welcome to the boards :wave:

My dad has just recently been diagnoised with PD and I am still learning about it. So I am not much of a help.

However, Bruce and Googy are very knowledgeable on the subject. And maybe they can help you.

Keep your chin up. Take care.

God bless you.

------------------
Kimi
Life is a gift. Your loved ones are the benefits.
Respect them both and you will reap the rewards.

Thank you. I hope someone can answer my questions. I called the Dr.s office yesterday but haven't had a return call yet.
I thought I might add that the Dr. did not say that he was thinking PD. He never mentioned the word. He scheduled me for a repeat EMG and glucose test. He said that I would probably then need to have a lumbar puncture,which has never been done. The first neuro I saw did a EMG and it was normal. The second who was a MS specialist did Mri's but not the spinal fluid. He is the one that gave me Amantidine, he said for dystonia and then sent me to the movement disorder specialist. I couldn't tolerate the side affects of the Amantidine and stopped it after 10 days. On the eighth day I had started seeing some symptom relief though. This MDS Dr. said that it is not dystonia and that he wants to rule out Stiffman syndrome and Issacc's. I had never heard of either. I think he may have just thrown those two things out because he knew I wouldn't know anything about them....I didn't know anthing about PD other than that it causes tremors until getting the Amantidine and reading about it's use for PD. The MDS gave me two prescriptions, Mirapex to try first, if it didn't help I was to try Ativan. I only find where Mirapex is used for restless leg syndrome and Parkinsons. Does anyone know of other uses? I have read about restless leg syndrome and I'm pretty sure that's not the answer.
One benefit I have seen from the Mirapex is that I can turn my head to look over my shoulder while driving. For some time now I have had to turn my whole body. I am still getting some muscle cramping, but not the very painful charlie horse ones I was getting several times a day. My toes and arches would curl. My fingers would cramp up in all directions and my hand would fold over with cramps. Just stirring a pot of soup or peeling vegetables would cause this. Driving would often cause feet cramps and sometimes I just couldn't hold the gas pedal or brake down. I couldn't have driven at all without cruise control to give me a break. I would have to pull over and get out of the car to stand up and work out the cramps before continuing to drive. This has not happened since taking the Mirapex. I did have one afternoon the first week with painful feet cramping for a few hours. It would be one foot then the other and then both! This time I was at home and my teenage daughters took turns massageing out the cramping.
If I ever get the doctor or even his nurse on the phone I plan to ask them point blank if he is considering that this may be PD. Thank you for any advice or insight you may have to offer. Blessings, Sharon

[This message has been edited by mom212 (edited 09-12-2003).]

Sharon, i posted a message earlier, but it is gone now. Maybe i have been banned.

Bruce

I hope not. I did a search and read everything that had been posted about Mirapex. I also found a post on another board today about Mirapex. I can't ask questions on that board since they don't accept my hotmail address for registration. I have not been able to find any other active board. Thank you for your effort anyway. Maybe whoever may have banned you has some help or advice. I didn't hear from the Dr.'s office today and am considering increasing the Mirapex slowly anyway.
I can't remember when I had more than 3-4 hours sleep at night. I can't sleep during the day at all. The first two weeks the mirapex made me very drowsy during the day. That has worn off now and I am very wide awake during the day, but dead tired! It has been strange how the feet cramps start at the same time each morning. I take the Mirapex around 11 or 12 and am up by 3, give or take a half hour. I cannot go back to sleep. I did double the dose tonight. I also think I need another dose in the late afternoon. Have any of you done this without consulting with your doctor? Remember, I don't know if this is PD something else. Will Mirapex harm you if you have another disease? I have never had to take meds for anything before, other than Ibuprophen and an occasional antibiotic . So taking this brain medicine is scary. Thank you and blessings, Sharon

Sharon,

I see you have seen a MDS.You have to rely on there judgement.It is never a good idea,to dose more of any meds,with out a Dr.approving.

Good Luck,

Googy

[This message has been edited by Googy (edited 09-12-2003).]

I agree Googy. I would never have taken more medicine though if I hadn't read that it was usual for it to be gradually increased until reaching an effective dose. I would never increase more than a minimal amount either. Again, I'm up at 3:30 . This time no feet cramping, just a bathrom call. I don't feel nearly as stiff this morning as usual. I will continue to try to get the Dr. on the phone. I have the emg scheduled for early Oct. and the next appt. is Oct.19th. He told me to keep him posted on my response to the med's. I called after the first week and the nurse said to double the evening dose or take an extra dose when I wake up in the early am. So I did have approval for that increase. So I don't really think it would hurt to add one more dose during the day, or to increase the other doses the same as the evening. I am on a very low dose compared to what is usual. (.25). I have also adjusted to the med well.
My main concern is that I have pretty much diagnosed myself based on my symptoms and my response to the Mirapex. I need to hear from you and others concerning my symptoms and yours....how do they compare and are my symptoms usual for early onset PD? Am I missing something here? Thank you for your help. Blessings, Sharon

This is my third try.

The dose of mirapex you first posted is not in the effective range. You were taking 1.0mg per day, and the effective range is 1.5mg-4.5mg per day. It is rrecommended that the drug not be increased less than 5-7 days. It may take as long as three months for the mirapex to be effective. If mirapex relieves most of your symptoms, it is likely you have pd. No rersponse indicates no pd. If you increase the dose sooner than 5-7 days you risk a possible overdose. Poor kidney function could increase the blood level of the drug.

Ativan: the doctor is covering for stress and anxiety.

It is possible you might have pd on both sides, which makes it harder to diagnose. PD is a complex disease and affects all over the body.

Bruce

Bruce, I'm glad you were able to post. Thank you for being persistant. In reading up on Stiffman syndrome I see where Ativan is used for treatment. It seems that people with SMS have severe spasms when stressed or startled. They have a very strong startle response. I don't think I startle any more than the average person. I have never noticed a relationship between being startled and having a charley horse spasm. SMS is also very very rare. I do get the muscle cramping more when I am very tired and after stressful situations though, such as holidays, hurried shopping, gardening etc. Most activities that I could do for hours I now have to limit to half hour segments with rest between. I have always been a very energetic person. I could paint and paper and decorate a room in one day. Till and plant a garden in one day. Now I have to break this up over a few weeks time. The same with shopping. I used to take the girrls to Dallas for two days of fast and fun shopping. I can hardly handle half a daay now and that's with resting at the food court several times. I have taken my 84 year old MIL shopping and she outlasts me! This is not something that just suddenly happened, it slowly got worse over severral years, starting with the hip pain after walking for very longgg. I didn't think too much about this. I thought just aging a little fast because of overdoing it. I started doing most shopping by mail to avoid the malls. I stopped teaching because I was just too tired at the end of the day to do anything with my family. I just wanted to crash at home evenings and weekends. The 3 kids were teenagers and very involved in many activities and I wanted to have more time and energy to be with them and give them more support. I didn't need to work so it was easy to quit. At this time we were also considering adopting more children as this had been a dream for years. I wanted to be tottally available to the children and concentrate all my time and energy on them. I never thought anything physical was really wrong at the time, just maybe arthritis from aging. I had physicals for each adoption. I always checked out fine and was just told to take Ibuprophen for the stiffness and joint pain. I didn't seek medical attention until it got to the point that I couldn't stand to finish the evening meal or vacuum the house without painn in my hips and then later the feet cramps.
My friends and family tell me that it's just because I do so much more than the average person with this large family. I don't really think that's it. For one thing the hip pain started when I only had the three children. We adopted one newborn in the US and the other children were ages 7-17 at their ages of adoption. These children were raised in orphanages and were very well trained to carry their own load. Actually these children help me as much as I help them. They are also very well behaved and lovable children. The main stress was the three adoption process's which consisted of 6 overseas trips in a three year period and then teaching the children English. I grew up in a large family as the oldest daughter, so I know how to manage. I was also a teacher for 12 years sso I had skills for teaching the special needs.
I feel like the stress of the adoption process itself may have brought out the symptoms more, but whatever it is that I have was there unregognized long before. I hope every day that this is just a stress reaction and that at any time it will just go away......I've never been one to get all stressed out over things. I'm pretty laid back and flexible when things don't go as planned....but I've read that sometimes you can have unregognized stress that can cause problems because you don't deal with it. I also realize that any change, good or bad is a source of stress to some extent. We have had many changes in our family over the years to adapt to. So who knows?
I feel like the Dr. was maybe prescribing the Mirapex just to see if I have the RLS based on the dose. It is interesting to read about the RLS relationship to Dopamine and PD. At the same time I can't believe that he didn't consider PD based on the symptoms I have of stiffness,imbalance, muscle cramping, difficulty with dexterity and tremor, even though I don't have the one sided symptoms and I don't think the tremor is typical resting.
I know I just have to be patient. I use all my patience up on the children though and have none left for these doctors! Seriously though I do realize that diagnosing is a long process sometimes and I do feel that this doctor will do what is necessary to eliminate all possible causes before giving a diagnosis. I do appreciate that. Thank you for your advice. Sharon

Sharon, your fatigue, leg cramps and poor balance do appear to me, typical of a neurological disorder, however, these symptoms are not specific for pd.

I am glad you are seeing a MDS, because this is their speciality.

Anxiety can cause leg cramps, and i drug i take for that is clonazepam, and will help you sleep. It's a strong drug, but i only tske one 1mg tablet.I ran out of the drug recently and the next day, i had cramps in my feet.

Bruce

Sharon,

Hang in there.My husband is also on Ativan,Just in the afternoon,when his dementia is worse.You have a hectic life.I admire you for giving a life to these children.

Googy

Thank you both. I don't plan to start the Ativan though. At least not until I have been able to increase the Mirapex enough to see if it is the answer. The doctor said to take the Mirapex first. If it didn't help the feet cramps to try the Antivan. He said that the purpose of both was to relieve the muscle cramps. Antivan is used for mucle cramps in SMS. Anxiety is a big factor in causing the muscle cramps in SMS. The blood tests have also been done for the antibodies specific for SMS. They were all negative. The purpose of the emg and spinal is also to help in completly ruling out SMS. I'm quite cerrtain I don't have SMS. It is much worse and rarer than PD. Based on the stories I have read of other people my age who have been diagnosed with PD ,mine seems very similiar. My stress this last year has been from not being able to do as much as I could or want to do and lately stress over not getting effective treatment . I don't think that stress would cause this hip pain and stiffness that I have. I have had many of the other PD symptoms that are common also. Right arm doesn't swing, I also sometimes hold it like I'm carrying a purse, which I have read is also characteristic. I asked my husband to watch when I didn't know and see if he observed any of these things. He has. He also noticed that my right shoulder is lower than the left. According to my family I also have had the masked face. My hand writing has been affected too. I have woke up a few times and been unable to turn over in bed for a few minutes. I have also awakened to find a wet pillow from nighttime drooling and have been embarrased by sometimes spraying when I speak. These are things that happened before PD even entered my mind. I hope this is all just a strange coincidence. I really appreciate your taking the time to respond. I will come back and let you now what answers I get after seeing the Dr. or talking to him. Sharon

[This message has been edited by mom212 (edited 09-14-2003).]

You just listed some of the classic symptoms. That was an intelligent move on your part to have someone observe you. If your hadwritting is tiny and illegible here is something to try. About once a week, write your name and save it. Week after week do the same thing. It's not a sure thing, but, if the mirapex is working, Your writting will increase in size.

I don't swing my arms and my right side is the pd affected side. The DBS surgery correced this problem and i now can type with both hands.

Bruce

Bruce, I think you may be the Bruce that I read a story about. In the story you wrote about how you were really the same person as before the diagnosis. That you had been learning how to deal with PD long before you had a name for what your symptoms were. At least it went something like that. I feel that way too. A diagnosis doesn't really change anything other than getting the proper treatment for those symptoms and then learning how to deal with something that you have to accept is not going to just go away with that treatment. Also I liked the part about how it could be so much worse. I agree. I have seen a lot of suffering in family and friends;cancer, kidney failure, heart disease.
As my writing shows, I keep trying to find a way out of this though.....I recognize many symptoms that indicate PD, and then I try to talk myself out of them. I really think about the tremor. This is something I don't think is anything like a PD tremor according to others stories. But then I know that some have a history of ET and others (30%?) don't even have a tremor. Tremor seems to be the main thing doctors look for in diagnosing PD. Also even though my right arm doesn't swing, neither does the left as much as most people. I do swing the right arm some when I think about it. I just don't think I have a definate one sided presentation that is typical. I don't have small handwriting. It has just become very sloppy. I can't seem to hold the pen good at times. My hand gets very cramped if I have to write very much and I just have to put the pen down and rest a minute, similair to how my feet feel when driving. I also go downhill on the paper when writing. Some days it's normal, other days I can barely sign my name. This is what keeps me questioning my gut feeling that this is PD. At the same time I am just anxious for an answer so that I can get on with things and put this part behind me. The Mirapex has almost stopped the crramping. This is strange but I look in the mirror and I just look diferent than three weeks ago. I actually have more wrinkles in my face which I don't like, but I just look more relaxed and like my old self. I also have more energy. last week I did a few jobs that I had put off for some time. I'm planning a shopping day at the mall with my four daughters next weekend, just as a test to see how much better I'm doing!
I do have faith that whatever happens is just a part of God's plan and will play a role in His big picture for our lives. Everything serves a purpose. I know that he never brings us to something without bringing us through it. I've seen it happen in my life too many times to doubt. Thank you again and Blessings to you and yours, Sharon

PS. I've been spending way too much time on the computer lately. I've vowed to give it a break for a while. I appreciate everyones advice and support. I know that it takes so much of your time.

Sharon, you have done your homework. Yes, whar you said about me is correct. Even though my pd has proggressed, i still have the same philosophy. I rarely think about having pd; i just live as "normal" as possible, and it's not a big deal. I remember something that still holds true. The anxiety may be worse then the disease. Just take one day at a time, and enjoy youself and all your children. It just takes a few adjustments over time.

Don't feel guilty about posting, because Googy and I enjoy helping people. It gives us something to do.

Bruce

I talked to the nurse and she approved my increasing the Mirapex by 50%.
Just when I thought it was really working I had feet and leg cramps on and off last night,plus horrendous stomach pain, maybe a virus. I have had sharp pinching,burning pain in my right side all day, from my neck to my feet, worse in my hip and knee. My feet have also have cramping today. What's going on? Just how much and how consistant should the Mirapex work? I know I have probably really been overdoing it since I have felt so much better this last week. I am also very very sleep deprived. Today is a busy day. I'm sure that has something to do with how I'm feeling. Meeting with social worker at 3:30 for an annual report on two of the girls, then parent teacher conferences tonight, plus fitting time in to take and pick two children up from gymnastics. I've been trying to get the house tidy, plus prepare dinner early. I'm having to take so many breaks because of the feet cramps that I don't know if I'll ever get everything done!
For you who have been on meds for some time, how much symptom relief do you get? How consistant? Thanks and Blessings, Sharon

Stretching muscles for leg cramps:

Calf muscles; stand two to three feet from a wall and face the wall. Lean forward keeping your feet planted on the floor. You should feel it in your calf muscles. Maintain that position for 30 seconds. Repeat as needed.

Foot cramps: extend the forward part of your foot and hold for 30 seconds. repeat as needed.

Bruce

Sharon,

Follow what Bruce said I do this every day,but for different reasons,for the leg cramps.

You need to cut back,and take care of yourself.

Try to get the children to help,they are a good age.

Googy

[This message has been edited by Googy (edited 09-18-2003).]

Thanks. I do the stretching. I had the foot stretch right just from trial and error in finding what works. I will try that one for the calf though. Am I expecting too much from the Mirapex or is it just really not what I need?
The children do help so very much, but today they were in school. They each keep their own rooms tidy, clean their bathrooms and do all the cleanup after meals. The younger girls help with dinner since the older ones work after school. The boys keep the yard,carport and porches clean plus sweep and mop the inside tile and wood floors. I do the laundry , but everyone irons their own clothes, except the 6 year old. The children were so well trained in the Detsky Dom that they don't leave their rooms in the morning without making their beds. Still it is a pretty big chore keeping the laundry done and shopping for the food and cooking for 10 every day. My husband is encourageing me to get outside help. I just really like doing things myself. It seems easier than telling someone else what to do and how to do it. Plus I get a lot of satisfacton from doing things for my family. I am preparing simpler meals and pacing myself as much as possible. Thanks, Sharon

MIRAPEX-----Anyone taking ( or know of someone) taking 10mg of Mirapex a day for PD? I am looking for people that have been given more than the recommended dosage for extended periods of time and want to know what kind of behaviors they have.My father took MIIRAPEX for PD and it was increased to 10mg a day. He had hallucinations and delusions that got worse and worse. He also had autonomic behaviors that we feel are related to the MIRAPEX. Anyone else know of PD patients on large doses of MIRAPEX?