Has anyone else had this problem?

I am kind of new to the whole blogging thing. I have had some sort of neurological disorder for 6 years now. I was diagnosed in 2006 with Parkinson's disease. In 2008, my diagnosis was taken away along with the medicine that was helping to control my symptoms. I just recently had a movement disorder doctor tell me, " We know two things: 1. This is absolutely not psychogenic and 2. you have a form of Parkinson's disease or a form of parkinsonism. We just don't know which one yet." He increased my medicine but didn't put anything in the notes, that I could see anyway. I just went to a doctor for a referral and he wanted to take me off the medicine that is working. I refuse to lie down and let whatever has a hold of me beat me. I just recently completed 48 of the 60 miles for the Susan G. Komen 3-day for the cure. I am tired of hearing that my symptoms are "atypica" and that my symptoms are just due to me being "overly stressed" and that my symptoms are the cause of psychogenic tremors. I am sorry to vent but we are getting to our wits end. Has this happened to anyone else?

19 Replies

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  • Laura, I haven't had this particular experience, and I admire your determination not to let whatever this is get the best of you. I was diagnosed with Parkinson's Disease in 2002, and am currently taking medication that, so far, is controlling the tremor. However, I hurt all over, every day, and am getting so frustrated! My sister was recently diagnosed with fibromyalgia, and I'm beginning to wonder if there's something more going on with me than the Parkinson's. As for your situation...I'm learning that we MUST be our own advocates, because we are the only ones who really know how we feel, what works and doesn't work (both with our bodies and with medication), and we have to communicate these things firmly with our doctors and caregivers. Good for you for exercising! I've found that riding my bicycle and practicing yoga work for me. Do you journal? That helps release a lot of the frustration, and puts things into perspective. No one knows how it feels to lose control of your bodily function until they experience it. And then when I see people who are suffering from terminal illnesses, or who are confined to wheelchairs, I feel guilty for whining. We must be gentle and forgiving with ourselves and do what feels right for us individually. I'm sorry that this doesn't really answer your question, but I care about you and wish you relief.

    Peggy

  • Peggy,

    Thank you so much for your caring words of advice and wisdom.I am sorry that you are in so much pain. One thing that I have found to help my tremors is number one the medicine but if I forget to take my pills like today (darn "parkie"brain lol) I have other outlets to "get me going". I use creativity to help the overall "stuck" feeling I get. We also use tons of humor in this house to get through the really rough days. I agree that when I see someone with a terminal illness or "differently abled" I look back at my life and wonder why I am whining at all. It is nice to have people to talk to that have been battling something similar to my own situation. I mean I wouldn't wish this on anyone but thank for caring. I care about you and wish you relief also.

    Laura

  • Absolutely I know this problem! I was diagnosed in 2003, and intially the medicaiton worked fantasically. With no symptoms visible the doctors could not see pd and took me into hospital for so called 'washout' over a fortnight. By day three I looked like a hobgoblin, and on day 5 the head neurologist came and took a look at me. Long and short of it was he sent me home got me to come into his clinic the next week and here I am, with a PDism of no definitive type, but still taking the medicine. :-) I never did have much of a tremor, I am more a rigidity/bradykinesia sort of person, but I do have a hand flap, and lately when I am walking my body seems to have a mind of it's own, my arms and legs are not doing what they should do, Your story sounds similar to mine, except for the tremor, and I guess I have learned to live with the uncertainty, and get on with life. My son has to see me unmedicated and knows the difference in me. I know the difference in me, but to get to a doctor I need meds! The most fed up I have ever been with this know nothing diagnosis is that when I gave up work (I was self employed) my sickness insurance did not cover me because there was a question mark over it. That really did upset me!

    Talking to other PwP makes all the difference, meeting up with them is a revelation. People who know what you are talking about, and what you are feeling. And you don't HAVE to explain yourself, they KNOW!

  • Hello Ladies! I was diagnosed in 2009/Nov. I had a bad tremor in my left hand, freezing in the right leg and eventually tremor in my right arm, I couldn't dress, bathe, feed myself before being diagnosed with Parkinson's. One thing I have learned, is stress will override your medicine's, it can be any type of stress, lack of sleep, confrontations, people being noisy, driving or just a loud noise, anything can set it off. I keep a small pill case with me, everywhere I go, with at least three doses of medication in it. If I get in a situation where I go all parkie, I will quick take a half pill, get somewhere quiet until it kicks in. I found out that the "aches and pains, stiffness" are all part of Parkinson's, I thought it was my arthritis acting up (: but the neurologist smiled at me and said "next stage pd, Jamie (:.." gee thanks guy...lol.. so now I take ibuprofen first thing in the morning and it helps with the aches and pains of muscles starting to freeze.. and I TRY to keep exercising.. have I said anything that helps? Hugs to everyone! and don't let our monster get you down (:

  • hi maggie g - i have decided to take the ibuprofen in the morning like you and i am def more comfortable today - so thanks for the tip x

  • Awesome Shasha!.. BTW when I was a little girl, many moons ago..lol.. I had a little doll named "Shasha" she was handed down thru 5 sisters and barely survived my first niece..She was my favorite doll...lol.. I'm glad the ibu is working for you.. it sure helps me get going in the mornings (:

  • my dolls were all naked as even though they were ll beautifully dressed when i was given them - i could not wait to take their clothes off .. how weird is that ?

  • Easier to play with them...lol.. without messing up their clothing... better than my sisters, they always cut their hair off... (:

  • Hi Laura, i too have pd and have a severe tremor in my right arm,i.v got to the point now where the going out for meals part of my life has gone,the tremor just gets out of control and the food goes everywhere,then i become the centre of attention and just want to get out of the place as soon as possible,i also get slowness of movement,i,v had pd since 2003 and i also get annoyed that the so called experts come up with the conclusion that i,m suffering from stress and anxiety,of course i am i,v got parkinsons,the anxiety wasnt there before,good luck to everyone,take care. alan xx

  • I think the one thing I have learned about PD is no two people experience exactly the same thing. I was diagnosed in 2004...am now 62 and doing pretty well actually as long as I am on meds. Laura, regarding your weird diagnosis...I have a big toe on my left foot that constantly flexes..silly little movement..but there.The neurologist said that wasn't Parkinson...probably my restless leg syndrome..( I read lots of us get that too) i used to have it tho where it was whole body jerks @ night or other resting times...and my body would be sore as heck afterwards. My symptoms of restless leg have almost virtually stopped tho since I started using the sleep apnea CPAP....except that toe. (talk about dehumanizing alanrob...I feel like an alien every nite when I suit up...my husband started using one for his sleep disorder and now I feel better about that dilemma) Had a bad broken baby toe recently(bet I'm not alone in hitting things) and when trying to x-ray the technician was trying to pull the rest of the toes back to get just the little toe...and there they were pulled back and that big toe that jerks went as far forward as it could bend...the tech and I both laughed at that....i told her I have some weird stuff.

    I have enjoyed reading all these blogs because when U look up symptoms you get acouple of big words and thats it...nothing about the aches,pains, memory problems..all the incidental things we recognize immediately when we see someone else describe them...it makes you more aware...so you can be more active in addresssing them...

  • Cleo, I too have the "dancing toes" I've worn out sooo many sneakers with this action..all five of my toes, with the big one as the leader or conductor, start rolling at the drop of a hat, my husband thinks it's funny when I have flipfops on, he calls my feet a study in motion. I've now developed a "pinky" finger wiggle, which is irritating to say the least.. just glad the rest of my body stays pretty still..

  • i heard there two ways of telling if you have pd a cat scan and if Sinemet works for you

  • Captsteve, The cat scan didn't show anything on me, but after many different medicines to stop the in ability to dress, bathe, walk the Sinemet-after one dose-had me a normal person again.. that's when my diagnosis was made concrete.

  • Hello and welcome to the "wonderful world of blogging"! lol

    I am sorry to hear about the difficulties you're having even with something that should (theoretically) be as simple as getting an accurate diagnosis.

    Real PD has historically been very hard to accurately diagnose. Especially amongst us PD folks who happen to still be alive. Seems that deceased Parkies do not present that much challenge to determine if we really have PD. Autopsies normally bear this out, but I, for one, do not choose to have an autopsy done today!

    Good news: There is finally a scan available in this country that should enable you and your M.D. to make an accurate diagnosis while you are still alive (what a concept!) approved this year, it is typically referred to as a Datscan. Try googling a few things in regards to:

    en.wikipedia.org/wiki/Ioflu...

    Here also is a very good primer on tremors:

    clevelandclinicmeded.com/me...

    Hopefully this into and these diagnostics will prove successful for you. Please keep us posted!

    Steve Arndt

    srarndt@aol.com

    PD Support group leader in Bisbee, AZ

  • Thank you all so much for your comments. I am sorry that you all have been having problems but I am so glad that I have people who understand what I am going through. I knew there were other people out there; however, I just never knew how to get ahold of anyone. I find myself nodding in agreement with each and every one of your comments. I will definitely start taking an anti-inflammatory medicine in the mornings. With regards to the autopsy- I want to forgo this as long as possible.....lol. @ falling down....I am actually on crutches, as I have been for the past 6 weeks, due to tripping. We always joke that I am a great Martini shaker and that I am a great "seeing eye dog" because my feet seem to magically find the things other people miss. Thank you for making me feel "normal" again.:)

  • anyone found anything that is effective for them regarding bad hand tremor,have tried most things getting desperate for some relief its becoming constant any suggestions gratefully recieved.

  • Alan, What medicines are you on? how long have you had PD? I have no insurance, so my doctor put me on Sinemet right off and it stopped my left hand tremor, I've noticed tho, that when I mess the timing of my meds up, ie take too much too soon, I get the dyskensias? real bad and have to lay down til the meds wear off a bit.. I'm now on Azilect in the mornings to help keep the roller coaster down..it seems to smooth me out all day along with my regular Sinemet.. BTW.. I threw myself on the mercy of the drug companies and am now getting the Azilect free from them.. had to take a cut in salary to do it tho ):

  • hi maggie, i,m on sinemet 4 times a day and trihexephenidyl,(artane) 2mg twice a day,i,v had pd for eight years now and have tried a lot of meds including azilect but my tremor is getting worse it affects most household tasks and i,v given up on eating out its just too embarrassing,it just takes off violently and usually the food ends up on the floor,i have to say i,v met a lot of pwp and have yet to see a worse tremor at least in severity

  • Yo tengo Parkinson y a mi hermana le tiemblan mucho las manos, pero ella no tiene parkinson. Sí su vida no ha sido fácil, tampoco la mía pero ningún doctor ha dicho que sea el resultado del stress.

    De todas formas le aconsejo que visite a un psicólogo o psiquiatra porque seguro tiene algo de depresión

    Saludos.

    Guadalupe.

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