Hi Teresa,
Have been taking the Sinemet for 10 days now on the 1/2 tablet 3x a day, as per the Neurologist I have seen in Minneapolis. Pain seems a little better during the day, but in the evening and at bedtime it is not good. Particularly when I go to bed. Honestly it is wearing me down. Will have an EMG on Weds and then see another Neurologist on Thursday at the Mayo. Sincerely pray that he will be able to help me with the pain. I continue to walk 3+ miles a day, garden and keep quite active. With be involved with the Big and Loud Program for the month of November. Thx for your concern.
Susan
@susan62
It is good to hear from you. I hope that your appointment with the doctor at Mayo will offer you some help with the pain problem. Some adjustment in the meds may be necessary, but the doctor can figure that out.
Do you have a lot of stiffness first thing in the morning? I hope to hear from you again after your appointment.
I feel the most like myself before being diagnosed with PD in the morning before I get out of bed. I would not say that I feel stiff. Slowly the discomfort and pain starts to creep back into my arm. As I think I have said, the pain takes different forms, from an electrical small buzz to a sharp pain, to a strong ache, to pins and needles, to a burning and to a twisting. It moves around and comes and goes. The twisting feeling is the worst. It is this pain that wears on me the most. I still excercise and keep very active. I can deal with the rest of the symptoms, but honestly it is this pain that makes it hard to keep positive.
Yes, I will let you know how my appointments go. Communicating with you helps a lot.
Thx,
Susan
I feel the most like myself before being diagnosed with PD in the morning before I get out of bed. I would not say that I feel stiff. Slowly the discomfort and pain starts to creep back into my arm. As I think I have said, the pain takes different forms, from an electrical small buzz to a sharp pain, to a strong ache, to pins and needles, to a burning and to a twisting. It moves around and comes and goes. The twisting feeling is the worst. It is this pain that wears on me the most. I still excercise and keep very active. I can deal with the rest of the symptoms, but honestly it is this pain that makes it hard to keep positive.
Yes, I will let you know how my appointments go. Communicating with you helps a lot.
Thx,
Susan
I agree. The twisting feeling is the worst. My main area of pain is my right thigh. That is where I have the twisting, pins and needles and cramping occurs. I hope you get relief soon.
I feel the most like myself before being diagnosed with PD in the morning before I get out of bed. I would not say that I feel stiff. Slowly the discomfort and pain starts to creep back into my arm. As I think I have said, the pain takes different forms, from an electrical small buzz to a sharp pain, to a strong ache, to pins and needles, to a burning and to a twisting. It moves around and comes and goes. The twisting feeling is the worst. It is this pain that wears on me the most. I still excercise and keep very active. I can deal with the rest of the symptoms, but honestly it is this pain that makes it hard to keep positive.
Yes, I will let you know how my appointments go. Communicating with you helps a lot.
Thx,
Susan
I have been thinking about you. As I recall, you had an appointment at Mayo last week. If you are comfortable sharing about that appointment, I would love to hear if you were offered any new suggestions or help with your current pain problem.
Hi Teresa. Thx for your continued interest. I had an EMG when I was down at the Mayo last Wed and I have no nerve damage. Hallelujah!!! I then saw a neurologist on Friday. He was WONDERFUL!!! I can’t say enough about how wonderful the Mayo Clinic is and everyone there is so helpful and concerned about helping you. I could tell you numerous very positive stories of family and friends experiences there too. Anyway, the doctor said that I am at the very beginning stage of PD and that I was getting a very low dosage of Sinemet. He increased the dosage which I am doing gradually every day. He feels confident that it should help with the pain in my arm. He said to call him if it doesn’t respond. Otherwise I am to see him again in 2 1/2 months. He strongly encouraged me to continue to be active by walking 3 miles daily, gardening and generally staying active. No problem on that with me. He also said that with the medication, excercise and working the Big and Loud Program I should have 10-20 years where my symptoms don’t change much. THAT made both my husband and me very hopeful. If one can, I STRONGLY encourage anyone who has some disease or major health issue to go to the Mayo. It’s good for your body and your mental health.
@susan62
What a wonderful report! Yes, I agree with the doctor that exercise can make the difference in symptoms of PD! I am glad that you have good medical support available now and that you and your husband feel more confident and hopeful.
Will you keep in touch and let me know how the increase in meds helps your pain?
Hi Teresa. Thx for your continued interest. I had an EMG when I was down at the Mayo last Wed and I have no nerve damage. Hallelujah!!! I then saw a neurologist on Friday. He was WONDERFUL!!! I can’t say enough about how wonderful the Mayo Clinic is and everyone there is so helpful and concerned about helping you. I could tell you numerous very positive stories of family and friends experiences there too. Anyway, the doctor said that I am at the very beginning stage of PD and that I was getting a very low dosage of Sinemet. He increased the dosage which I am doing gradually every day. He feels confident that it should help with the pain in my arm. He said to call him if it doesn’t respond. Otherwise I am to see him again in 2 1/2 months. He strongly encouraged me to continue to be active by walking 3 miles daily, gardening and generally staying active. No problem on that with me. He also said that with the medication, excercise and working the Big and Loud Program I should have 10-20 years where my symptoms don’t change much. THAT made both my husband and me very hopeful. If one can, I STRONGLY encourage anyone who has some disease or major health issue to go to the Mayo. It’s good for your body and your mental health.
Hi Teresa,
I am only about 1/3 of the way toward getting to the maximum dosage that my doctor wants me to achieve. It is such a gradual process, but yes, I have already noticed quite a bit of improvement. My Mayo doctor told me that I am very early in my Parkinson’s and that I should have 10-20 years where the symptoms should be managed. As you can guess, I was THRILLED to hear that!!!!!!!!!
The pain is significantly better and I don’t experience it much except in the later part of the evening into going to bed and then it is not as bad as it was. I think the pain comes at night because my excercise and activity during the day has worn my muscles and they are tired. They feel way more ridged then. Certainly won’t stop being active and exercising though. Everyone I have talked to has emphasized this.
The Sinemet has really helped with the symptoms, besides the pain, that I have had. My writing is a lot better and though I still think BIG when I do, it is SO much easier. My balance is quite good. I swing my arms when I do so now without thinking about it and my steps are long. My strength is also a lot better. I can open bottles, etc with my right hand and mix thick things like cookie batter. I can get into heavy coats by myself. These are the things I have had trouble with.
So, for the most part things have improved quite a bit. Thx for your support!
Susan
ps I LOVE my Mayo neurologist!!!!!!!
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@susan62
It is good to hear from you. I hope that your appointment with the doctor at Mayo will offer you some help with the pain problem. Some adjustment in the meds may be necessary, but the doctor can figure that out.
Do you have a lot of stiffness first thing in the morning? I hope to hear from you again after your appointment.
I feel the most like myself before being diagnosed with PD in the morning before I get out of bed. I would not say that I feel stiff. Slowly the discomfort and pain starts to creep back into my arm. As I think I have said, the pain takes different forms, from an electrical small buzz to a sharp pain, to a strong ache, to pins and needles, to a burning and to a twisting. It moves around and comes and goes. The twisting feeling is the worst. It is this pain that wears on me the most. I still excercise and keep very active. I can deal with the rest of the symptoms, but honestly it is this pain that makes it hard to keep positive.
Yes, I will let you know how my appointments go. Communicating with you helps a lot.
Thx,
Susan
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2 ReactionsI agree. The twisting feeling is the worst. My main area of pain is my right thigh. That is where I have the twisting, pins and needles and cramping occurs. I hope you get relief soon.
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1 ReactionHello @susan62
I have been thinking about you. As I recall, you had an appointment at Mayo last week. If you are comfortable sharing about that appointment, I would love to hear if you were offered any new suggestions or help with your current pain problem.
Hi Teresa. Thx for your continued interest. I had an EMG when I was down at the Mayo last Wed and I have no nerve damage. Hallelujah!!! I then saw a neurologist on Friday. He was WONDERFUL!!! I can’t say enough about how wonderful the Mayo Clinic is and everyone there is so helpful and concerned about helping you. I could tell you numerous very positive stories of family and friends experiences there too. Anyway, the doctor said that I am at the very beginning stage of PD and that I was getting a very low dosage of Sinemet. He increased the dosage which I am doing gradually every day. He feels confident that it should help with the pain in my arm. He said to call him if it doesn’t respond. Otherwise I am to see him again in 2 1/2 months. He strongly encouraged me to continue to be active by walking 3 miles daily, gardening and generally staying active. No problem on that with me. He also said that with the medication, excercise and working the Big and Loud Program I should have 10-20 years where my symptoms don’t change much. THAT made both my husband and me very hopeful. If one can, I STRONGLY encourage anyone who has some disease or major health issue to go to the Mayo. It’s good for your body and your mental health.
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2 Reactions@susan62
What a wonderful report! Yes, I agree with the doctor that exercise can make the difference in symptoms of PD! I am glad that you have good medical support available now and that you and your husband feel more confident and hopeful.
Will you keep in touch and let me know how the increase in meds helps your pain?
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1 ReactionI will keep in touch. Thx Teresa!
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1 Reaction@susan62 Hi Susan:
Just thinking about you and wondering how you are feeling with the increase in Sinemet. Have the extra meds helped with your pain?
the increase hasn't helped so far. it's not so much pain as it is the stiffness and feeling like my muscles have been over worked.
Hi Teresa,
I am only about 1/3 of the way toward getting to the maximum dosage that my doctor wants me to achieve. It is such a gradual process, but yes, I have already noticed quite a bit of improvement. My Mayo doctor told me that I am very early in my Parkinson’s and that I should have 10-20 years where the symptoms should be managed. As you can guess, I was THRILLED to hear that!!!!!!!!!
The pain is significantly better and I don’t experience it much except in the later part of the evening into going to bed and then it is not as bad as it was. I think the pain comes at night because my excercise and activity during the day has worn my muscles and they are tired. They feel way more ridged then. Certainly won’t stop being active and exercising though. Everyone I have talked to has emphasized this.
The Sinemet has really helped with the symptoms, besides the pain, that I have had. My writing is a lot better and though I still think BIG when I do, it is SO much easier. My balance is quite good. I swing my arms when I do so now without thinking about it and my steps are long. My strength is also a lot better. I can open bottles, etc with my right hand and mix thick things like cookie batter. I can get into heavy coats by myself. These are the things I have had trouble with.
So, for the most part things have improved quite a bit. Thx for your support!
Susan
ps I LOVE my Mayo neurologist!!!!!!!
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