Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
I have been doing too much looking online for answers in regards to various tests, medications, symptoms, etc. as I am now completely confused about everything. I'm starting to doubt that I even have PD because my symptoms don't seem to be the same as others in this group. I can't get my symptoms to match up with the symptoms of PD when I look online. I can't even get answers on whether or not the symptoms I am having in my legs is related to PD, RLS, or just something like a pinched nerve in my back. I can't figure out if the medication Mirapex is being prescribed to treat me for RLS or PD since Mirapex is not doing anything to help any of my symptoms. I am confused about why they are performing a nerve and muscle test because I can't understand what it says they will be able to determine when the results come back. I'm just not sure about anything anymore. I try to follow conversations here in the group about levels of something in the brain that cause PD but it makes no sense to me. I want to be more pro-active in medical treatment if I do indeed have PD but it's hard when I'm clueless about it all. I even tried to look up Stages of PD and don't' see where I fall into any of the Stages. I know that a neurologist specializes in diagnosing PD but besides the fact that my one arm doesn't swing when I walk doesn't necessarily mean I have PD does it? Right before I started having problems with slurring of speech, trouble swallowing and chewing and had some drooling issues, I felt a tingling sensation on my nose - then all of the sudden my symptoms appeared. I may be in denial but I can't help but think that I may have just suffered a mini-stroke instead of having PD but like I said - I am just feeling confused because I'm not seeing many, if any, people in this group that display they same symptoms I do so is it possible that I don't have PD? I know my symptoms are real yet none of the medications I am on are working to alleviate any of my symptoms. My symptoms are real but is the diagnosis? I don't know where to search for answers anymore - I know that there is a lot of support out there from members in this group but I am having problems understanding or comprehending what is being said or suggested. I think I am starting to lose my ability to think straight and or to understand the simple things. I am just lost in my thinking pattern right now because I just am not getting or understanding what is going on with me emotionally or physically. Have I lost my mind?
I don't know what your symptoms are, could you possibly list some of them.
The doctor said that if the Sinemet did not work for my symptoms then it would not be Parkinson.
I started with mild tremors in my left hand, pretty soon I started having tremors that seemed to start inside my body then my whole body had tremors. They started me on Artane for the tremors. My arms do not swing when I walk. I lost my sense of smell, but I don't know when that happened. I choke a lot and I really hate that part. I started having episodes where as I was walking my feet froze but the upper body kept going. Have had many falls. Other times I just freeze in place. I can not walk with out a rollenator. My balance owes points. LOL One of the very frustrating things is that everything takes twice as long to do. I can tell when the meds kick in and when they are wearing off. Each time I go in they increase my meds. Today I began an extended release version of the Sinemet, hoping to be able to function better in the morning. Falling out of bed in not my favorite hobby.
If the medication is not working they should try a different med; however, they told me there was a test for about $5,000 that would identify the PD better.
What symptoms are they using to diagnose your PD? Maybe you need a movement specialist. That is what I found. She is a neurologist, specializing in movement disorders.
Wishing you well.
Hugs-RJ
The restless legs could be just that and have nothing to do with PD.
I don't believe I have restless leg syndrome because I have no problems sleeping at night ad my legs don't bother me when I am stretched out on the bed sleeping. My pain in my leg is an all day pain and only get relief is when I stand up.
maybe you can help shed some light on things for me. Like I had stated earlier I am at a complete loss right now. Not getting answers to questions about my symptoms or tests.
Good luck in your search and let us know how you are doing.
So I'd say stop comparing yourself to others. It's a shame there is no definitive test, but if you don't trust your neurologist, get a second opinion.
Good luck!!!
that I never knew were related till i started reading here. Oh and I've been taking one of the meds that cause Parkinson's for 13 yrs now (almost forgot that part)
point is trust your doc, if not find a new one
I do not have any swelling in my left foot at all. It's just a tingling and feeling of numbness. I haven't been checked for any possible clots either. I did have the Nerve Test done yesterday and it wasn't all that bad. There were a few times though that the shocks definitely got my attention. They put the probes down my entire leg and on my foot and toes yesterday so maybe the doctor will receive the information today and get a chance to review them. If he finds it's nerve related based on the results of the test yesterday then maybe he will cancel the muscle test.
Thank you for your concern - I will let you know what the results are from the tests once I get them.