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Christian V

Lost waiting for a diagnosis

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My name is Christian an I'm new to posting on the forums, but have been reading for a while now. I'm 29 years old and have been displaying some neurological symptoms for about two years. I'm losing my mind not knowing for certain what is going on. The symptom that pointed me to Parkinsons was reduced arm swing in the right arm and now my right foot scuffs the floor. I move slower than i used to (i used to dance) and i just have fatigue all the time. I've been treated for essential tremor, but it is not an action tremor, it will mostly only move when my hand is sitting there. It does make it hard to text and type. I have bipolar disorder as well, and starting me on antipsychotics greatly amplified the slowness and feeling of apathy. Over the past two years I've become a recluse, haven't had much of a social life and haven't been able to study like i used to. The non-neuro doctors I've spoken with tell me it isn't Parkinsons because i don't have rigidity and the tremor isn't a full pill-rolling tremor. I've got a scheduled appointment with an MDS, but it is 4 months away. It's killing me feeling my body and mind change and not have any answers. 

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Hi, Christian.  So sorry to hear of your problems.  It sounds like your non-neuro doctors are well informed re: Parkinson's to have replied with the information they did, but you are very wise to have made an appointment with an MDS, as they are the ones with the most updated information. Is your MDS's practice associated with a research-based university?  That is very important.

Those of us suffering from some of the same symptoms you have (esp. fatigue and apathy) are very empathetic.  We understand what you are going through, and especially at such a comparatively young age.  On the positive side is that there is so very much research going on that seems to be making headway as far as early diagnosis and early interventions, as well as research focused on helping those of us who have had symptoms for years.  There are a lot of very motivated top research organizations and individuals working hard to find some things to help us, so please keep that in mind.  We are also here to support you in any way we can, as are a number of other Parkinson associations.  Being in contact with those who are also going through what you are is one of the very, very, very best things from early on and forward if your diagnosis does turn out to be PD.  I'm glad you found us.  Welcome.

Linda Garren

DIagnosed 2013

Edited by Linda Garren

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Yes, my appointment is at the University of Utah, so it's a good clinic. They're just booked out so far that I'd like to maybe get into a General Neuro so i can get there opinion and maybe rule out other conditions like MS or something else. I can't imagine living this way much longer, it's just not a good quality of life. Even though I don't have a certain diagnosis, emotionally it's like I've already been diagnosed.

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We understand.  A non-MDS neuro could possibly help, but we hear of patients not getting the most up-to-date info from them, as they are researching, collaborating, helping patients etc., in their pwn specific specialties.  It's hard for them to have adequate time keeping up with the updates re: their own specialties.  It's the same for MDS's.  There is so much information it would be impossible.  When I look at what my own MDS does, I always wonder how in he world he does it.  Full load of patients, some of whom he specializes in as a subset of patients with Parkinson's; research involving his and other patients; answering e-mails from patients (in a very timely way), etc., etc., and always upbeat and smiling and compassionate and energetic.  It's mind-boggling.  :-)   It's hard on those who do have to wait a long time to see an MDS, which most of us have experienced, but well worth it. 

Have you considered posting in the "Ask the Doctor" and "Ask the Pharmacist" forums here?

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Hi Christian,

try to hang in there. It takes a while to get a diagnosis. Living in limbo is no fun. 

I know you're not seeking to have PD, you just want to get answers, get fixed and move on with life. 

While waiting, start exercising and find a hobby to get involved with.

maybe it will make the time go quicker.

-S

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Christian- I had 3 months of medical limbo. It definitely stinks. I will share my insights if it may help you. Exercise...it will help everything....dance again. It saved me. Parkinson’s is different for everyone and it is manageable.  I know it’s incredibly hard but try not to let the “what if’s” consume you....Be present in your life. You will get answers and you will be ok. Try doing a journal. It helped me and gave my doctor some information on how I was feeling. 

Stay strong & stay hopeful. 

 

LAD

my journal turned into an online blog ... feel free to check it out ... or not😊

https://ladpdjourney2.wordpress.com/

Edited by LAD

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Hi Christian,

I was diagnosed at 33 years of age...that was almost 17 years ago.  My initial symptoms were lack of arm swing on one side, bradykinesia (slowness, poverty of movement), and rigidity.  My hope for you is that what you have is not PD; however, if it ends up to be PD, don't fear and don't lose heart.  Young onset (diagnosis prior to 50) usually has a very slow progression and there are a host of good medications that are helpful.  It is a very manageable disease; although as someone has pointed out, we all experience the disease differently with regard to symptoms.  I have never had tremors at all.  Try not to worry (I know...easier said than done).  There is no definitive test to diagnose PD...simply rule-out of other things and commonly a trial of PD medication.  I am still working full-time and doing everything I used to do...  Some days are more difficult than others, but it could be alot worse!  While PD is a progressive disease, and while there is no cure, there is much promising research going on.  I have been involved in about 7 clinical trials.  In fact, my current treatment came out of a clinical trial...I have a medication pump that infuses medication all day long.  It is a wonderful option!  Anyhow, my prayers and thoughts are with you as you wait for your appointment.  We are here for support if you need us!

Peace and blessings,

Michael

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Christian V.    Cheer up brother, while waiting for your appointment,push it and force it while you are still young,exercises has been proven to help.Don't let the symptoms pin you down.I felt exactly the same way when I first noticed my symptoms,filled with fear,until I got my diagnoses,after a waiting period of about 7months.The waiting period for my MDS initial appointment was tough,but I pushed through it.Yes you can! Good luck.

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So many things in common! Bipolar,antipsychotics, initially inconclusive symptoms, long waits for appointments. It took four years from the first time I started thinking “something is very wrong!” until I got a drug induced Parkinsonism diagnosis. Whatever your diagnosis ends up being, exercise, self-compassion, support groups(people with Parkinson’s are very welcoming to you as you wait for a diagnosis) are all good.

I read a great book about Parkinson’s (Brain Storms by Jon Palfreman) that said about half of the people diagnosed in the first five years get the wrong diagnosis, so doctors are very cautious especially since the symptoms develop so slowly and differently. 

My personal favorite treatments are comedy of every kind and these dopabean pills (Solaray brand with enteric coating). I take two every couple hours when I want to move (at least 45 minutes after eating). Doing something nice for someone every day and walking briskly are my second tier coping strategies. Seriously, find what makes you laugh! Even having a movement disorder is sometimes funny. 

https://parkinsonsdisease.net/living/pd-pundit-adaptation/

P.S. If you’re thinking of trying Dopabean ask your doctor. Also some people on the forum have tried it and got no benefit at all. 

 

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Thanks for all the replies. I’m no longer on the antipsychotics and I definetly feel better, but symptoms persist. They’re back to pre-seroquel levels. My psych doc is lowering the lithium too, but the symptoms that scare me the most are minimal sense of smell that used to be pretty good and arm swing. I’m in a better place now for sure though waiting for the MDS.

thanks again for your support 

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