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Susie Poston

Needing support and opinions from those who know.

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Hello everyone I am new to this forum, in fact I still can't grasp that I am posting this at all. I am the type of person who dismisses things as no big deal because I don't like to worry people. A few years back i began to notice a slight occasional tremor in my left hand, mostly my thumb. Since then It has gotten worse, and now is in both hands. I notice it less if I am busy doing things, but when I am sitting still they shake almost constantly, somedays more then others. It has now gotten to the point where I feel as if both arms arm shaking like inside my arms. I have a slight headache most days, My left shoulder somedays is so stiff or sore that it affects some of my daily functions. Also for the last year or so have had a constant stiffness in my left hip it is painful and difficult to walk after gettting up from sitting and sometimes just in walking in general. My neck and shoulders always feel tight.....I usually just write that off to stress. In the last few months the little voice in my head tells me something is wrong, especially since I have noticed occasional involuntary twitch of my head or shoulders. I just had an appt with a neurologist and an MRI yesterday. I am 34 and there is a strong history of PD in my family. The Dr. seemed to not want to discuss the possibility of a PD diagnosis but the more I read and research and talk to family members the more my instincts tell me it is more likely PD. I guess I am just wanting some input from people who have been through the process. I also have had depression and anxiety issues that have seemed barely affected by a drug cocktail prescribed by my doctor/psych. I would like to know what you all think having read this....

 

 

Susie

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Hey Susie, I wouldn't worry just yet, (I know easier said then done). At least you've taken the first steps to figure things out. I am 34 too, and was recently diagnosed after a schlu of different tests. The neurologist told me based on my DAT Scan images, that it looks like I've been living with PD for years now (there are sooooo many symptoms that I blew off to stress, etc., and so did my primary a few years ago). It's interesting that you have a family history of PD. I don't, (from what I've been told), and my neuro even had my father assessed due to his tremor and walk, and nothing there. I finally got a solid diagnosis, esp with my response to the meds. My neuro's next thing for me is genetic counseling, and genetic bloodwork to see if I have the gene, esp for my kids' sake. She said not all Dr.'s do this, but considering my DAT Scan results and my age, we are gonna move forward and get it done. Considering you already know you have a family history of it...maybe you can ask your neuro what he/she thinks about this genetic test. Feel free to message me any time! Good Luck!

 

Kristin

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Thank you Kristen! It all seems so overwhelming right now and uncertain. It wasn't until I started reading through these forums and seeing large parts of what i am feeling in others posts that I started to accept this possibility. My follow up isnt until Tuesday and that feels like forever away. I keep telling myself I am over reacting that these symptoms will just go away....although deep down I think I know the truth. So as someone my own age in your opinion with what I have described am I over reacting or should I just start to see this as a real possibility?

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Susie,

 

Might I suggest you wait until Tuesday before you accept a particular fate. I'm very early in my journey, have yet to be diagnosed 100% that I have PD but was told that I mostly likely have it. I've started taking my first prescription just the other day in hopes of alleviating my symptoms. Part of me hopes it doesn't work so I can say I don't have PD. For now, I'm holding on to the possibility that my symptoms are benign or caused by something much less ominous.

 

I hope your symptoms are something else.

 

Dave

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I'm no doctor, so I can't say...all you can do is hope your journey in discovering what's going on with you turns out ok, and if it is PD, we're all here for you :)

 

We all have different stories and symptoms, and individualized issues...too much to say.

 

As for me, and my own PERSONAL story, I wish I was aware of this disease earlier, since I "ignored" soooo many of the symptoms for years. You are in the right direction going to a neuro and ruling things out. That was my 1st step too. There are soooo many things that can have similar PD symptoms, and only a neuro, or an MDS (a neuro that specializes in movement disorders), can tell you what's what. Good luck!

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Thank you all for the support.....it helps to be able to talk about things and to know that you all know the scary place I am in. Fear of the unknown is worse then anything. I will keep you updated.

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Susie: I am 53 and was diagnosed with PD a little over a year ago. The best thoughts I can give are a couple of things my doctor told me. Don't read to much on the internet about what could happen because everyones path is different. Stress and worry makes my symtoms worse and he was right because it was just stressing me out. I take one day at a time and try real hard not to let it keep me from doing anything. I still bicycle, hike, fish, golf, scuba dive, work in the yard, and squeeze in time for a full time job. Second, he told me he has had patients that went 20+ years without their symtoms getting worse. I am hanging onto that and so far, I don't think mine have progressed (tremors in left arm and leg). Good Luck and God Bless

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Susie, as dballinger said plus others....stress and worry makes things worse....some times friends call me the queen of stress...hard to get a handle on it ...remember you're not alone...if posting helps...do it...always someone here.

 

Patricia

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Susie: Having Parkinson;s is not a show stopper. Exercise your head off and eat healthy food - you will feel better physically and emotionally. And every once in a while go to Youtube and listen to Bo Diddley songs! I do and it helps keep the depression at bay...

 

Have Fun!

 

PaulG

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Wow, Everyone, let's just hold our horses for a second !or at least until susie's doctor commits to a final diagnosis.

 

Good luck Susie. Only your doctor can sort this out for you. Keep us posted.

 

PS : I've noticed that most first time posters who ask for initial advice don't return for an update and that's too bad for our community. we need this feedback, not only from patients who end up with a diagnosis of PD, but also from patients with an alternative clinical diagnosis. it's important for people to know that not everyone with Parkinson's-like symptoms has PD.

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I am very grateful to everyone who has taken time to not only read my post but to reply back. I know there is a range of diagnosis that could come back.......Joining this forum and posting has given me the courage to get real with myself, and with my husband. I have known in my gut for a while that there is something not right(whatever the something is) but I have worked overtime to hide the tremors, and to not admit or even allow myself to acknowledge any of the other things. I realize there are things I did not tell the neurologist when I went, and now see that was a silly mistake. Sometimes I am my own worst enemy......thank you all so much for the support and well wishes. I am doing my best to stay positive until the final answers are in. It is very comforting to know this forum is here and that there are people like all of you to help make this a little less scary.

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Thank you for your presentation. We are waiting for your results and in meanwhile tell us more about yourself and signiticant others in your life.

gmk

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More about me...well I am 34 I have lived in WA state my whole life. I am married to a wonderful and supportive man, his name is Howie. I have a son who is 12 a stepdaughter who is 14 and a step son who is 10. Only our our daughter lives with us. My son is in Utah with his Dad. This has been a very trying year or so for me, I lost my Mom in July of 2011 and life just seems to keep putting more and more on my plate. I have realized I am much stronger then I ever realized which is helping to face this new challenge what ever it turns out to be. I am very glad to be extending my support circle with all of you. I will be sure to let you all know how what I find out on Tuesday!

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Susie, just wanted to say good luck tomorrow...that's when you're finding out your results, right? ...at least of the MRI? I wish we were closer. We seem to have so much in commom, figures we're on opposite sides of the country! I too have a 13 yr old son, and two younger ones as well. It is important to have support. Count your blessings. That's great thay you have such a supportive husband and family. I'm borderline divorce with my husband....the PD and his own disability truely CLASH, to understate things :( and I have NO family at all in my state.

 

Whatever happens with your testing, GOOD LUCK, and know that this is a great forum regardless; very supportive :)

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Thank you so much! I agree it would be nice to be closer. Washington is a beautiful state....you could always relocate :) just kidding. Yes tomorrow is my follow up....I will be sure to update here as to what I find out.

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Sorry for not updating last night, appointment ran long then had to jet off to a choir concert for my daughter. Well the verdict is essential tremors, and I am apparently too young for the neurologist to feel comfortable prescribing an anti tremor med. So I guess I am stuck feeling as frustrated and inconvienced as before. She has no idea what is causing my headaches, her guess is stress and told me to take vitamins. She says she sees no symptoms of PD and seemed unconcerned with the strong family history of it. So I guess I am just here in the same spot as I was a week ago...just me and my tremors.

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Susie,

You are NOT in the same spot...now you have a diagnosis. and a rather "benign" diagnosis, with a good prognosis, far better than the diagnosis of a degenerative condition such as PD. PD is a horrible disease. you should be relieved you (seem) to have got off the hook ! i would LOVE to be in your place.

 

On the other hand, i don't quite understand why your neurologist feels that your essential tremor must not be treated. (at this point).

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Hate to say this but my first diagnosis was Essential Tremor and I was given a med for it that did help the tremors about half the time. It helped the "action tremors" like when I tried to write or put on makeup etc. It didn't help the "resting tremors". A followup visit had me taken off of the first med and put on Mirapex. I was diagnosed as PD with the possibility of Essential Tremor too. I've still not been put back on the med for action tremors, which I'm going to see if I can't get that med back too because the action tremors make it hard to perform so many everyday tasks. My PD is managed quite well with Sinemet now.

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PD and essential tremor may coexist. And, yes, sometimes neuros (as any other doctor) make the wrong diagnosis. Some patients are diagnosed with PD they don't actually have, while others are diagnosed with dystonia, essential tremor, depression, etc, while they actually have PD. But this is far from the rule.

 

On the other hand, as emphasized by one of the top movement disorder specialists William Weiner : "Quite honestly, we expect medical students to be able differentiate between essential tremor and parkinsonism". in the absence of true rigidity and bradykinesia, a diagnosis of PD is highly unlikely, if not impossible. And most neurologists are competent enough to tell the difference between ET and PD.

 

From my point of view, Susie went to the neurologist (we can only assume she was an experienced MDS), the neuro examined her, listened to her and explained her findings to her, including why she thinks PD is out of the picture. That is GOOD news, no, correction, that is GREAT news,leaving little margin of error.

 

My opinion : people with a tremor or any other neurological symptom resembling Parkinson's,but without a formal diagnosis of PD, should not read too much into anything written in this forum. (present post included, LOL 8) ). Our opinion/advice, albeit well intended, will always lean towards PD. Nothing worse than projecting our own diagnosis/fear of PD to other people.

Edited by christie
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