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How long does it take to diagnose


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#1 aquariusgirl1971

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Posted 20 October 2012 - 11:15 AM

I'm thinking about changing neurologists. I've been seeing mine for about a year now. I made an appointment because I started seeing more and more symptoms present almost a year ago. My tremors started getting worse. My handwriting got more cramped and small. I had a hard time concentrating. my right foot with drag. my face is so oily my makeup just slides off. my energy level got very very low. I became more stiff. my kids kept asking me if I was mad because I always had a mad look on my face. Recently I had a bout of frozen shoulder. and now my hip pain is so bad it's hard to walk. my doctor prescribed me some medication for tremors but I had to stop taking it because it drop my blood pressure too low. I already had a low blood pressure problem. my maternal great uncle had Parkinsons. I'm not sure if there were any other documented cases in my family. My doctor hasn't come forward with any type of diagnosis. when I saw him in the spring I did not have the hip pain but I did have the frozen shoulder and other symptomspresent including anxiety and incontinence. To me it is pretty clear cut, but I feel like my doctor is moving too slow to make a diagnosis as my quality of life is getting lower. I thought someone posting about an MDS. who is this and should I seek another neurologist or does it take more time to diagnose.

Edited by aquariusgirl1971, 20 October 2012 - 11:17 AM.


#2 school

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Posted 20 October 2012 - 03:08 PM

The first two years after I was diagnosed with Parkinson's, I went to 4 neurologists. They all diagnosed me with Parkinson's disease on my first visit. My early sypmtoms were one-sided tremor and muscle rigidity. I do not mind when my clients seek a second opinion. Indeed, I encourage they do if they are at all unsure of my impressions and recommendations.

#3 school

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Posted 20 October 2012 - 03:17 PM

Sorry, I did not realize that I was in the Young Onset forum. I do miss my working memory. It must be so-o-o-o much mor difficult for you guys. Perhaps your neurologist is reluctant to diagnose Parkinson's (not that you have it) because he/she is hoping so very much that you do not have it. I hope that you do not but also that you get the right treatment soon.

School

#4 christie

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Posted 20 October 2012 - 03:19 PM

An MDS is a movement disorder specialist, that is a neurologist specialized in movement disorders, such as Parkinson's disease, dystonia etc. Try find an experienced MDS and just describe the symptoms. Don't jump to the conclusion that you have Parkinson's, just because some of your symptoms "match". A medication trial might be needed to evaluate response of your symptoms to l-dopa. Almost all patients with PD, and especially those with young-onset disease respond dramatically to this drug. And yes, many neurologists are very reluctant to diagnose a young patient with Parkinson's from the first visit. Observation for some time (usually 6 months to a year) is normally required to confirm progression of disease and document the presence of symptoms typical for the disease.
Good luck and keep us posted.
English is not my first language !

#5 Despina

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Posted 20 October 2012 - 04:27 PM

I was diagnosed immediately but it took me 9 months to go to a doctor

#6 Delta

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Posted 20 October 2012 - 07:23 PM

I saw doctors for 6 years before I was diagnosed. Finally I asked my primary care doctor to refer me to an mds. Luckily she had copies of all the tests the neurologists had performed. The MDS spent 30 minutes with me and said I had a textbook case of YOPD.

If it doesn't seem right continue to seek answers. You are you own best advocate.

Caution. I sat in my MDSs office and said "yes, I knew I was right!" Immediately followed by "Sh##, I have PD"

#7 aquariusgirl1971

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Posted 20 October 2012 - 08:05 PM

I would almost welcome a diagnosis of PD. then maybe I would be able to get some type of treatment. this is starting to affect my relationships. people see me as lazy or and unsociable. they don't know how hard it is just to make myself function everyday. it's an effort just to get out of bed or get up out of the chair. I'm only 41 years old. my nickname used to be energizer bunny until a year ago. Today it took me all day to mop the kitchen floor and do two loads of laundry and put them away. I think part of my neurologist apprehension about a diagnosis is that I was very b12 deficient and now I have to take weekly injections. this only mildly help my fatigue and dementia. I just feel like I'm falling apart.

#8 Vanillab1027

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Posted 20 October 2012 - 08:25 PM

I was relieved to get a diagnosis after 2 1/2 years of fatigue and widespread pain. I wasnt diagnosed until I started having right side weakness, followed by dragging my right foot and no right arm swing. I also was found to be B12 deficient as my doctors ran three months of tests to find my answer and now take B12 injections. I can't tell if they make any difference but the first dose of sinemet was like a miracle. As soon as it kicked in I could walk normally again and two weeks later my arm swing returned.

I switched doctors to find one that listened to everything I said, believed me, and started asking the right questions and running the right tests. I only wish I'd done that sooner!

Good luck!

#9 christie

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Posted 20 October 2012 - 08:25 PM

any diagnosis, even that of the most serious disease, is usually welcome by the relieved patient. diagnosis seeking is an exhaustive process. on the other hand, let's not forget there are also non-progressive, non degenerative as well as curable conditions which may cause parkinson's-like symptoms.
aquariousgirl, i know how much you want a diagnosis. we've all been there and felt the same. but remember you may as well have something else, much more "benign" than PD. you should welcome any diagnosis-not necessarily of PD-leading to appropriate treatment.
English is not my first language !

#10 aquariusgirl1971

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Posted 20 October 2012 - 09:01 PM

You're right I don't want a wrong diagnosis I want a correct with treatment. Vanilla I also have right side weakness my doctor did nerve test To confirm. At this point I think the best thing to do is to find an MDS. I really don't think that my doctor takes me seriously enough and his medical assistant has actually ridiculedme for my symptoms. She thinks that I'm too young to be having all these symptoms. She does not let me talk to my doctor in between visits every 6 months. Actually started having the symptoms several years ago and have had a tremor since I was a teenager.

#11 DKBlues

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Posted 20 October 2012 - 10:29 PM

PD or not PD that is the question! As of right now there is only one way to get a positive dx and I doubt any of us want a dx that bad (autopsy). It has been 4 years since I first started this fun ride. I actually was first dxd with PD by my family GP. Sent to neuro who said looks like PD so gave sinemet(dopamine) and did better. Then #1 added Azilect(MAOB-I) and was already on an SSRI, went downhill. He didn't feel that changing the balance of 3 chemicals in my brain might cause a problem. #1 decided not PD and sent to #2. #2MDS decided it was drug induced PD symptoms and took me off all meds. Only made symptoms worse and put me in the mental ward for 2 weeks. They put me back on the SSRI and gave me sinemet, and was much better. Found another #3 neuro who dxd ET, RLS IBS, anxiety, and I forget what else but says it isn't PD. He is currently treating me with meds (not used for ET or RLS) but sometimes used to treat PWP. So I still have no real dx. A little family history I have 3 family members alive with PD including a 1st cousin (YOPD) and atleast 3 more we know of that had PD before they died. This is just mine thru my grandmother's generations.

I got tired of them adding a drug and it would have warnings about using with everything I was already on. I now act as my own doctor I listen to what they suggest then do my own research. I then tell them what meds I want and in what dosage. It gives me control, something us PDers seem to have little of at times.

My current med issue I need to resolve is that the one I take to make swallowing/talking easier works too well. So now I swallow air and get acid reflux. Their answer is add another drug. Nexum isn't going to fix the problem it will only half treat a symptom. My answer try to lower dosage of one causing problem or to try another one to replace it. Face it there are many of us on here that know more about PD than docs do. We have a vested interest in it.

#12 Kristakj78

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Posted 22 October 2012 - 03:07 PM

Aquarius, I had NO idea what Parkinson's symptoms were when I first went to my initial neurologist. In fact, I was convinced I had MS since my aunt did. I was blown out of the water, along with relieved at the same time to have some sort of diagnosis though. I have very similar symptoms, (i.e., the neck pain, the stiffness/rigidity, the small handwriting, OILY skin, etc). I too learned there were other illnesses that can mimic or as my third neuro said can "zebra" Parkinson's. It wasn't til this past summer that I finally made an apt with an actual neuro to address my symptoms. I literally couldn't walk like I used to. I used to walk everywhere with my kids, mainly to tire them out, and this summer I just couldn't. I think it was Mother's Day weekend when I was in Lowes with my husband, when I joked, "I think I have a brain tumor....I literally need to "think" how to walk before I take each step." I would freeze up, walk slow, have issues folding laundry or using the mouse on the computer....mainly with my right hand. I knew something was up, but had NO clue what, so I made the apt. I went to three neurologists, two of them being MDS's. Have you had bloodwork to rule out other things? That was the first thing my neuro did. Trying to rule out other things, and seeing your response on a Parkinson's med is mainly how they diagnose. I have also had an MRI of the brain and the neck, and a DAT Scan was ordered (since I am so young). All these things, along with your medical history should point your neuro in a direction to diagnose. I have had symptoms for years before this past summer that my primary, my orthopedic and myself simply attributed to stress and my sense of urgency....but this past spring/summer was when I really realized something was up.

Regardless of what your diagnosis is or will be, one thing is for sure....NO Dr or their employess should be making you feel uncomfortable and unapproachable. My advice is that no matter what happens, find a different, more approachable Dr that will listen. I would find a neurologist who is a Movement Disorder Specialist (MDS) in your area that you can express your concerns to openly.

Edited by Kristakj78, 22 October 2012 - 03:09 PM.


#13 Golden01

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Posted 24 October 2012 - 08:11 AM

Sometimes it is hard and sometimes it is easier. My husband was diagnosed on our front porch by my neighbor's son who is a neurologist. Of course, he didn't give an official diagonsis but encouraged my husband to see a neurologist as he had the "signs of Parkinsonism." I have a friend with YODP who, like others here, did not have typical symptoms (no tremor, marked bradykinesia and dystonia). She went through years of not knowing what was wrong and was eventually diagnosed at Mayo Clinic.

#14 williamg

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Posted 24 October 2012 - 08:41 AM

The more I read here the more I realize that I may have had more symptoms for longer than I think. As for how long it takes to get diagnosed, so far 10 months and counting (10 years and counting if I count from the first visit for pain issues).. As you know there is only one for sure test that can be done but you have to be dead.There are a lot of test's that can be done to rule out what could be the cause of your symptoms.
Finding the right doctor can be half of the battle and some people get lucky the first time. If you are like me it will take up to 8 different doctors before someone actually tries hard enough to figure it out. If you think being diagnosed takes a long time wait till you apply for disability.......
I'm not crazy, I'm just special!! ..No, wait..... Maybe I am Crazy. One second...... I have to talk to myself about this... Hold on......................

#15 hkewf

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Posted 24 October 2012 - 12:23 PM

Aquarius, please let us know what happens with your quest for a new doctor.
My hubs (the one with PD) first went to his internal medicine doc with some strange symptoms. The doc was alarmed enough with some of the symptoms that hubs presented that he promptly ordered up some MRIs - these were to rule out the grapefruit-sized brain tumor that the doc was worried about. From there, we were on to a neuro. He thought essential tremor (ET) at first and had hubs start on some blood pressure meds that also help with tremor. Hubs tried these for probably 6 to 9 months and tremor and other issues were just getting worse. The neuro noticed some asymmetry in the tremor and ordered up a DAT Scan. The DAT scan showed irregularity in dopamine transport and we had ourselves a diagnosis. From the visit with the internal med doc to the diagnosis was less than a year. This, I understand, is pretty quick - some folks take years to get a diagnosis.
After the diagnosis visit and a followup visit, reading posts on this site and others about MDS, and reading a scholarly paper about care differences/care outcomes between MDS, neuro, and general MD, I knew we needed a MDS. (The paper by the way is available at: http://www.movementd...eng article.pdf) The neuro, I'm sure, was super smart, but lacked specific, day to day experience in movement disorders and besides his bedside manner was absolutely atrocious - I swear he was catching up on reports concerning my hubs for the first few minutes of every appointment - what's with that?! Like he couldn't remember us from the last visit or take a few minutes before our appointment to get refreshed on our case?! We let the neuro know that we were going to seek another opinion and his response was something along the lines of 'every doc will have their own opinion' - as if we were going to waste our time seeing someone else. WHATEVER!! I don't want to sound preachy, but one thing to remember is that it is YOUR appointment, YOUR money, and YOUR life!! You have to do what you have to do for YOU!
I feel like we were/are lucky in that we live in a city that has a NPF Center of Excellence facility. We now have a MDS that my hubs fully appreciates and respects and I think she feels the same about him.
You may have to work at finding just the right doctor, as others have noted too, but I think it is a worthwhile expenditure of your time. Especially since it will likely be a relationship that you will have for a long time - barring misfortune or, conversely, the jackpot - a cure. Good luck!

#16 SandyD

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Posted 25 October 2012 - 07:45 PM

Hi Aquariusgirl, I went undiagnosed for 2 years. I was 30 years old when the symptoms started to get noticeable and kind of unbareable, like not being able to get up out of a chair, or press the buttons on the TV remote. And a dystonia in my right foot. Also at work people thought I was drunk because as I stood there talking to them I would kind of tip over, (like you would if you WERE drunk) I wasn't! and also I would fall into my walk-in closet as I leaned to take something off of the hanger, down I would go.
They say that about 80% of your dopamine producing cells have died by the time symptoms start to really become noticeable. Like Williamg said he noticed that looking back he can remember symptoms from long before he was diagnosed, years.
I was 32 when they diagnosed me and I had seen Psychiatrists, Neurologists, GP's, Chiropractors, and what ever other kind of doctor there was available. And I came upon the Fear me I am God types ( I hate to say it but they were both Neurologists) Anyway finally I went to another local neurologist and he said I think you have Parkinsons. Gave me the little yellow pill and 20 minutes after I took it...It was a Miracle ALL my symptoms were gone!!! Until 3 hours later...

Anyway yes go to a MDS if you haven't already. They would be your best bet! And there are nice ones out there.

The road ahead is not an easy one whatever the diagnoses is but just remember to take it a day at a time and start to enjoy the things you haven't in a while because you've been running...things will be better. There will be good days and bad. Or we can pretty much say good moments and bad moments. But it is a journey...not a destination...

God Bless you and your children, our children are our blessing and can really be helpful to us. But we have to remember to treat them good. We have the pain, they don't know. So be gentle and loving. And tell them "Mom is not doing good at the moment and go to a place where you can be alone." So that you don't "take it out on them".

I'm not trying to tell you what to do or how to be...I am just speaking out of Love and Experience and knowing what I have done wrong in this journey. And trying to spare you some of the $^&*#@.
Sandy
Live, Love and Laugh every day!

#17 aquariusgirl1971

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Posted 29 October 2012 - 05:47 PM

I contacted my gp dr last week and they had no idea what an mds was so i did my own trsearch and found one two hrs away. I then called my dr and told them that i needed a referral and gave them the mds's name and number to make me an appointment. Yhat was last wednesday and i still havent heard back. I told my gp that i was having trouble walking and getting out of bed. Seems like they would feel it was important. It was a tough week. My mind hasnt been right. I tried to put my debit card in my gas tank twice before i realized i was doing the wrong thing. Not to mention i asked my daughter the same question 3 times in 5the mins last nite. To make matters worse my life partner told me he tjought i was a hypochondriac due to the range of symptoms. I told him i knew he thpught that and that it bothered me knowing he felt like that because i dont tell him a fraction of what im going thru. Im so frustrated.

#18 Delta

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Posted 29 October 2012 - 06:26 PM

"The waiting is the hardest part."

Once my primary care doc sent my records to the MDS, he reviewed them and agreed to see me. I did not know this step took place until much later. I then waited for the next available appointment. From time of referral to appointment 4 months.

The MDS's office called me on a Friday afternoon and said they had an opening on Monday. If I didn't accept appointment, it would be another month or two.

Please be patient. It may be longer than you are expecting, but it's worth the wait!

#19 williamg

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Posted 29 October 2012 - 08:58 PM

I waited 9 months to see the MDS. Where I live there is a large demand for them and very few of them. I have an appointment next month with him again. I am to be diagnosed then. I just lost my insurance so now I need to figure out how to pay for the visit. I have been waiting 10 months to see a reumatologist and will have to cancel due to lack of funds.
I'm not crazy, I'm just special!! ..No, wait..... Maybe I am Crazy. One second...... I have to talk to myself about this... Hold on......................




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