Introduction, So much questions and no answers

Hi Everybody,

I'm Sophie, 28, from the Netherlands. For the last 6 / 7 years I'm having al kind of neurological symtoms. I had endless tests but the doctors don't have a clue what is wrong with me. So for now I have: an unexplained neurological movement disorder. I write a blog about my life: Sophiebrain.wordpress.com

Symtoms: pain, spasms, tremor, cramps, stiffness, tiredness, sleeping problems, bloodpressure droppes, always cold etc.....

My GP gave me in April pramipexle (Mirapex) as an experiment and at everybodies surprise it worked great. I have hardly any spasms (myoclonus) any more and am less stiff.

After months of waiting I just got an daT-scan, which was negative. So no parkinson. In the same emails of the results, my neurologist suggest to do an IBZM scan later for parkinson plus.

Wednesday I see him again. I have so many questions, but I know he has no real answers. All the the illnesses that are easely checkeble are checked. The only thing he can do is keep an eye on me and wait. Waiting for what. The last couple of years I got worse. And even with the medication is is obvious that it only helps for the symtoms not the cause.

For the daT-scan I was off meds. Then it was really noticeble that I'm getting sicker. I cound't move my facial muscles at all any more. Walking was only possible indoors and so many spasms I cound't do a thing.

Now it's getting clear that my meds are wearing off. I need more to get the same results.

Plan of questions for the doc wednesday:

- How much chance does I have of parkinson plus (MSA)?

- How are my vitals doing? (Bloodpressure, heart, sleeping problems etc)

- What to do with the meds?

- Is there other meds I can try.

I'm scared, I'm worried and don't have many people to say this to. I don't want to get my family more worried (and they don't like to talk about it anyway).

So now I'm here, a PD friend told me about it. I hope you accept a PD look-a-like instead of a real one....

Thank you for reading, and I feel better now because I got it off my chest.

Sophie

24 Replies

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  • Welcome!

    I would love to have had this blog available when I was first told I had PD. I’m sure you will enjoy the people who post, as I do.

    Just remember to enjoy (as much as possible) today, don’t borrow sorrow from tomorrow. Talk with your doctors, tell them how you are feeling, are you having side effects from meds, ask questions and stay informed.

  • Sophie. Not knowing is the worst part. We're all with you and you are not only welcome to this site, you are the reason for it. Best of luck with your appointment and try as best you can to sleep. Lack of sleep just exaggerates everything in my experience.

    All good wishes and if you feel the urge, let us know how you get on..... and if you don't feel the urge - well that's fine too!!

  • I agree, having the proper amount of sleep really makes a difference for me.

  • hi sophie

    i am 65 and was diagnsoe w]ith PSP (a Parkinsons plus) in 2010

    i have been upbeat since the diagnosis as it explains so many of my problems

    not knowing is worse like tom says

    except that u r v young to have parkinsons and certiany Psp /msa/ cbd at age 28

    love jill

    smiley if i knew how to do them

  • A smiley can be made with a : a small "o" and the aposterphe ) put together

    :o) Terri

  • Dear Sophie--

    I'm glad you wrote. We welcome you unconditionally and we wish you good outcomes.

    I would suggest you remain hopeful and take charge of your life in any way tou can. Eat well. Keep moving. Seek company. Find pleasure. Make the most of your social benefits. And make sure you get the best neurologist you can find. My first neuro was not good and with a little research (15 minutes on the internet) I found a much better doctor.

    I hope you write back and keep us up to date.

  • Thank you all for your nice comments.

    Don't worry I take good care of myself and do loads of fun things. I'm not a person how stays in bed and waits till it passes. I have a good care system and good doctors, therapist, social worker. They just run out of options. I know I wrote just a sad blog, but that is just a mood.

    But sometime you have to find a plce to express you worries to, I hope I can do that here, without bothering friends and family.

    Thanks

    Sophie

  • You have come to the right place. Everyone is here is for the same reason you are...to be able to share our journey with others traveling the same road. We understand the highs, the lows, and everything in between because we all feel that way at one time or another. You are having a sad day and that's okay. We'll be here for you no matter your mood.

  • Hi Sophie and welcome to this site. You are welcomed by us all with open arms no matter what your final diagnosis is. We are here for you as an exclusive community and we all understand 100% what you are currently going through. I was diagnosed with Parkinsons in Oct 2011......for me it made me feel better....sounds strange I know ...but it was worse not knowing what I was facing....and now I am facing life full on with a huge smile on my face.....laughter is the best medicine...Yes we all have our downs but personally I have many more ups. Anyway its lovely to see you on here and take care and good luck.....let us know what is said...and.....if you have any more questions ask any of us and we will try our best to give you answers

    Best wishes

    Andy xx

  • This blogging site is your friend. Come here when you need to feel better.

  • Sophie I had a quick look at your blog AFTER I gave you my (unasked-for) advice. I can see that you are taking good care of yourself. I fear I was condescending to you. Also I felt sorry for you because you are so young (I'm 58) and your symptoms are so varied and so troubling.

    Next time you write I will focus on what you say and not my preconceptions or my own need to feel that I am being compassionate to another person.

    Meanwhile I will look up the daT-scan...I have never heard of a test that rules out PD.

    Best wishes.

  • Hi,

    A da-T scan never rules out anything. pd isn't a diagnoses you can get which they know for sure. But my neurologist told me in the email with the results that the scan was fine and I don't have PD. I think he doest that because I'm so young and the propebility of PD is very small.

    He and other doctors have one big problems. PD meds work for me, and that is not really possible. So I'm a medical mystery.

    Thanks for your advices and for reading my blog!

    Big hug Sophie

  • Hey LF, told you they were lovely on here x

  • dat-scan info:

    pdf.org/en/science_news/rel...

    parkinson.org/Patients/Pati...

  • Glad you wrote. I hope that the doctor takes seriously your list you shall bring to his attention. My doc is happy when I bring a list along and a list of meds. It must be very difficult for you and I hope things begin to change for the better and the doc will have some real answers for you. Thank you for sharing here. I hope you get your answers soon. I have had docs who say to me too "lets keep an eye on it." whatever "it" is. Hope to hear from you soon that things are going better and "it" has been found and being taken care of.

    Best wishes, Dennis

  • You are doing all the right things sophie but also dont be put off by your neuros demeaner because in my experience there manner can be offputting and condesending and this can make people nervous,make sure he answers your questions and explains things to you thats what they are supposed to be there for,a lot of them are to far up there own a---e,this is more prevelant when they have student in with them.you deserve answers and you are so young to have these symptoms,good luck.

  • I just woke up and it feels so good to see all the nice comments. It really helps.

    Big hug to all of you. Now time for breakfast, violin playing (sound horrible), some internetdating and then making my papers for la doctor. So you see, no boring life, just weird.

    Bye

    Sophie

  • Welcome Sophie. I hope you'll enjoy the site as much as I do.

  • hi sophie

    how did yur appat wiht the doctro go?

    love jill :-)

  • HI All,

    Survived the neurologist yesterday. We had a long good talk and I was glad my friend Albert was with me. I got a lot of answers and new things to think about. But the answer I want; what is wrong with me?? Is not expected to be found, I have to live with that. (So no MSA) And the doc is very proud how I'm living my life! But he doens't expect me to recover. C'est la vie (blog about it later). I need to go to my therapist first.

    It felt like a lot of people where standing next to me, thank you all for that.

    Big hug Sophie

  • I'm glad you found your way to this sight, Sophie.

    You have been trying to find answers a long time.

    I hope you will find some of those answers here.

    You are in my thoughts and prayers daily.

    Tonya

  • Welcome Sophie, this site is wonderful---only been on less than 2 weeks but have found so much support and comradarie (sp we are here for you whenever you need us. God bless. Gail

  • Welcome to the "club". This is a great site. I always feel better after reading these letters. It helps to know that you have other people going through the same things.

  • Sophie, If i was as ill as you have stated, i would get on a plane to England, and go and see a neurologist that knows about Parkinson's Disease, Doctors are not the best for Parkinson's, even some Neurologists are only use to older people with P.D. I have P.D. since 1999 I was 44 and my Doctor hadn't a clue what was wrong with me. the sooner you know what you have the sooner you can get treatment. But I hate being negative, you have to be strong. and fight.

    bye Danny

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