How do you get a dx...

[hurtsobad73]

I was hoping that someone may have been in the same situation that I am now in. I have been seeing a neurologist regarding symptoms that I thought might have been MS. He reluctantly gave me the test needed...MRI, blood test(I guess to rule out Lupus, etc). My concern is that if I call him up and tell him that I would like for him to look at me for Parkinsons Disease, he will think that I am just looking for an illness.

That is not the case. I don't feel good. I have many symptoms that just aren't normal. I have my nights/days mixed(sleep some during day, awake at night), tremors of hands are getting severe(for instance, I have noticed thqt in the last week and a half I have had a hard time grasping objects i.e. a pen, a butter knife, and a drinking glass, as well as having a hard time holdng papers in my hand{my hands shake enormously}), I have twitching of both hands, legs, mouth and for some reason I bite my tongue because of my mouth twitching, leg cramps, choke very easily(usually on liquids or even soft foods...it sees like they goo down the wrong tube), not sure if this an increase in saliva, but for over 3 yeaers my saliva is what I would cause thick at times. It almost looks like I have toothpaste in my mouth.?! Wierd, eh. Depression has huanted me for many years, but more recently because it is hard for me to do anything due to extreme fatigue. During my visit to the neuro, I told him that over the last 3 years, it has been so hard for me to take a shower. I have to do it in seperate settings. Usually shave and wash, then later come back and wash hair. Otherwise it will take me approx, 2 hours because I get so tired when doing anything strenuous. Also when I walk more than 20-30 minutes, my legs get very week and start to shake. I feel like I am literally going to fall and have several times. My husband thought I was just clumsy, but he notices an increase in my falls, dropping things and running into walls and couches, end tables, etc.

I guess what I am wondering is, do you think 1) this sounds like PD, 2) that my neuro would have already thought of PD since he was checking me for MS or 3) I should call my PCP or neuro and ask them about PD.

Please any help/suggestins/ideas/comments would be greatly appreciated. Thank you inn advance.

Missy

[Stitcher]

I would encourage you to go to a Movement Disorder Specialist

There is a Udall Center at Duke University in Durham, North Carolina

Udall Centers are scattered across the USA (to be a Udall Center is an honor)
Here is a list of them
http://www.ninds.nih.gov/funding/research/parkinsonsweb/udall_centers/index.htm

This link has details about each location
http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=452&srcid=377

Keep posting here too at NeuroTalk. I am sure this thread will receive more postings. There are many PWPs in our Forum membership who have tons of insight they can share with you.

:Good-Luck:

[made it up]

Hurtsobad,
Maybe I'm wrong but going by the symptoms you have it doesn't sound much like you have P.D.
If you think you're being ignored or receiving substandard treatment consult another doctor.
Anyone else have an opinion on this?

[hurtsobad73]

just bumping up...

I would really like to hear from more PD sufferers or anyone who has thoughts/suggestions/ideas/comments.

Thank you in advance.

Missy

[oyster]

:D is your tremor a resting tremor?
are your symptoms on one side of youp body, or did they start out on one side and then spread?
are you slower moving?
do you tend to take short shufling steps?
it helped me to go see a movement disorder specialist. a neurologist here in my town referred my to dr scott at duke u. in durham. he has seen thousands of people with parkinsons and after a thirty minute exam he gave a 95% diagnosis of parkinsons.

[K.Ibsen]

Usually, the best advice is to stay with the doctor you know and who knows you. Sometimes, however, this may not be true.

I tend to think that we are buyers and the medical professionals are sellers. When it comes to buying things, I read labels, and if it's something expensive or important, I do research, etc. So why should it be any different with doctors.

There are some articles out there that discuss what constitutes a good doctor-patient relationship. Perhaps others who participate in this forum can contribute their ideas about what make for a good relationship. For me, one of the most important things is communication. If I don't feel that my doctor is listening to me, well, that's reason enough to seek other options.

I think I made the mistake of being certain that I had PD. This seemed to anger my former doctor and we were never able to recover the relationship. The unwritten rule is that diagnoses are the exclusive domain of the doctors. After realizing this, I had to acknowledge that my approach needed rethinking.

I believe, though, that as patients, we are entitled to some explanation. I think it's OK to say to our doctor: "I feel awful. Can you make me feel better? Can you explain what is happening to me?" Give them the facts and demand results. Their job is to help us or heal us or at least make us feel better. If they are not doing it, then, in my opinion, it's time to find another doctor.

Oh, by the way, I was diagnosed with PD about two weeks ago. It's odd that it feels like a victory. A person would have to be crazy to want to have PD. However, because I fought so long and so hard with the doctors it does feel like I won in the end. Strange, huh?

Karl

[K.Ibsen]

I guess what I am wondering is, do you think 1) this sounds like PD, 2) that my neuro would have already thought of PD since he was checking me for MS or 3) I should call my PCP or neuro and ask them about PD.

Since you haven't received many replies, I'll go ahead and reply again. Regarding your questions:

1. No, it doesn't sound like PD to me. There are some similarities, but there are some differences, too.

2. Yes, I would expect that a neurologist would consider PD. I cannot speculate what she/he may be thinking, but I would sure expect a highly educated individual would consider all possibilities (at least within their realm of knowledge and expertise).

3. Yes, call. But I don't advise asserting that it is PD. Doctors need facts. Tell them what you have told us.

About PD: I'm not a doctor. I'm just a person who has symptoms and who has done a lot of reading about the symptoms I have. You have symptoms that I don't have. So it sounds to me like you may have some parkinsonian symptoms and more. There's the possibility that more than one causal factor may be present. As I read through your symptoms, I had the thought of a chemical problem or perhaps the presence of something toxic.

My advice: Take the facts to your doctors and be assertive. There is no reason for you to suffer. The doctors alone have the answer. Don't give up and don't give in. Keep believing that there is an answer for you. It's not really the diagnosis that matters most. What matters is getting healthy and feeling better.

[Chicory]

Sometimes it takes a long time for a diagnosis. Do you have another appointment with your neurologist in 3 or 6 mos? If yes, you might wait till then to ask about Parkinson's. There is no definitive test for Parkinson's other than seeing if you respond to Parkinson's meds, and many neuros don't like to start you on those sooner than necessary. You are right that if you call your doctor just to ask about Parkinson's, he might think you are just looking for an illness. I have had that experience.

It took 7 years for me to get a diagnosis. I was told possible MS, then the tests all came back normal. My neuro told me there was something neurologically wrong, but he didn't know what it was. Then I went to a well known movement disorder specialist who told me there was nothing wrong with me and asked if I was depressed. After trying a couple other neuros, I was finally referred to a new neuro by another doctor, and the new neuro said he would help me. At first he didn't know what was wrong with me either, but then I started to have trouble standing up without holding the arms of the chair. He said I might have Parkinson's, but he didn't want to start me on Parkinson's meds yet. Three months later I did start Parkinson's meds and three months after that I was diagnosed with Parkinson's. Now there is no question that I have Parkinson's because of an increase in symptoms and the way I respond to Parkinson's meds.

Symptoms I had while undiagnosed were leg pain, my foot dragged, paresthesia, occasional difficulty swallowing, and fatigue. During this time I took Neurontin which helped some.

Good luck to you.

Chicory

[Jaye]

Carolyn nailed it for where to get medical help.

made it up, oyster, and Karl wrote answers I wish I'd written myself. You might also check the websites of the big orgs: APDA, NPF, PDF, MJFox. NPF at www.parkinson.org used to have a checklist of symptoms to compare.

A couple more comments:

...he will think that I am just looking for an illness.
Darn right. I agree with Karl. Re-focus on wanting to know what's wrong so you can receive appropriate treatment. You hire a doctor to diagnose and treat, with your hopefully educated questions and input for decisions. YOU are in charge of your health care, but even if you were a doctor it would be foolish to diagnose and treat yourself due to lack of objectivity. Another important realization is that it takes 18-20 years after high school to make a Movement Disorder Specialist, so they'll be able to think of diseases you could have.

I would write a list to take with me that summarizes what's going on, maybe something like this:

...I have my nights/days mixed(sleep some during day, awake at night), My sleep patterns are reversed.

tremors of hands are getting severe(for instance, I have noticed thqt in the last week and a half I have had a hard time grasping objects i.e. a pen, a butter knife, and a drinking glass, as well as having a hard time holdng papers in my hand{my hands shake enormously}), I have twitching of both hands, legs, mouth and for some reason I bite my tongue because of my mouth twitching, leg cramps,
My muscles shake, twitch, cramp and feel weak, enough to interfere with tasks of daily living. [How much of the time?]
choke very easily(usually on liquids or even soft foods...it sees like they goo down the wrong tube), not sure if this an increase in saliva, but for over 3 yeaers my saliva is what I would cause thick at times. ....
I choke easily. [Doc will know to look at your saliva, if he/she thinks it's important. By the way, how's your fluid intake?]
Wierd, eh. Depression has huanted me for many years, but more recently because it is hard for me to do anything due to extreme fatigue.....I get so tired when doing anything strenuous.
I have extreme fatigue, and that worsens my feelings of being down in the dumps much of the time.
Also when I walk more than 20-30 minutes, my legs get very week and start to shake.
[YOU CAN WALK THAT MUCH? This doesn't fit with "extreme fatigue" etc. Do you also hold a job? Do household chores? Cook?]
I feel like I am literally going to fall and have several times. My husband thought I was just clumsy, but he notices an increase in my falls, dropping things and running into walls and couches, end tables, etc.
My balance and coordination are impaired/messed up.

Missy, it certainly seems like you have some sort of neurological problem, but there are hundreds or thousands of reasons for tremors, and you describe bilateral action tremors, whereas we usually (not always) have tremors at 5-6 Hz beginning on one side in the hand or foot, at rest, which tend to go away (early in the disease process) when we grasp something, and which typically are not affected by alcohol intake.

Ooops I'm late or a meeting, gotta run, hope this helps. Trust us, we've told you about all we can.

Jaye

[hurtsobad73]

Sorry it has taken me so long to reply to all of you. I have had a hard time lately and just feel to depressed to talk about it. However, since you all have been nice enough to respond, I know I need to answer all your questions:

First of all, I was initially dx with possible MS. I was cleared of that 2 months ago by my neuro.

I have fibromyalgia which is the reason I am trying to walk. Twenty to thirty minutes does seem alot, however it isn't aggressive walking. I walk with some of my neighbors and there are 2-3 two year olds that walk with us. So there is a lot of stopping and slow walking, as well as stopping to talk with others in our neighborhood. However I still seem to sweat like I have walked miles and my legs get so weak that sometimes I have to call my husband to come pick me up when I am not that far from the house. I just can't walk anymore, my legs won't let me. They are too weak and they shake profusely. Also, when this happens and I get home, my hands are shaking tremendously as well as my legs. Total weakness in my body.

I do a little bit of household chores i.e. one load of laundry, load/unload the dishwasher and that is about it. My husband cleans the house, cooks, does all the errands and takes care of our 14 yr old son. They both are truely blessings. My son takes on a lot of responsibilities for his age. He helps me out a lot but never complains.

I do have an appointment with my neuro in about 6 months. I think I will see how my symptoms progress within this time and if they get worse or new things seem to happen, then I will get in to see him earlier. They are great about getting us in quickly. It is a university hospital clinic and once you are a patient, they are quick about appointments.

Whether my tremors are resting tremors or not, I don't know if I can answer that. My tremors don't happen much when just sitting or relaxing. But it does happen. It seems more like twitching to me though. Now when I am up or trying to hold things, I have tremors in my hands and legs that just won't stop. I can barely hold things without shaking. This morning I noticed that my arm hesitated when I tried to move it. Also my fingers where curled, but not in a fist position and I couldn't get them straightened for about 5 seconds. It was a weird feeling, but then they finally straightened out as did my arm when I moved it. What could this be?

I do not work. I haven't worked since Nov. 2003. I had to resign that job due to the many absences I had. In June of that year I had a hysterectomy due to stage 4 endometriosis and later in Sept or Oct. is when my neurological symptoms started to show. I have progressed in symptoms since then and am scared to think of what it could be. However, I know my body and I know there is something wrong. My PCP recognizes this and was surprised back in early September when I told him that there was something wrong. My body just didn't feel right. Then the twitching on one side of the body started. Sleep disturbances. It then has progressed to both sides of the body twitching and the shakes. Memory problems were a big problem in the beginning and now. I forgot how to put my manual (stick) car in park and ran into the house...oops...lol. I forgot where I was one day and sat down and started to cry. I was at a movie rental store with my husband. He eventually found me, but I just couldn't fathom how I got there. At the time I wasn't driving because of seizures. I have seizures due to severe migraines. I have since been able to get my migraines under control with the help of a migraine specialist and now my seizures are under control.

My husband says I drag my left foot. He feels that is why I trip a lot. Which may be the case. I looked at my shoes and the left is wore on the in side more than the outside and much more than my right shoe. Would that be due to dragging? My husband thinks so.

I hope I have answered all of your questions. If not please let me know. Karl, sorry I haven't responded, but I will get back to you.

Thanks to all of you for helping me. Please answer any of my questions if you can.

Missy

[ol'cs]

... when in doubt, a good group of neurologists, as found at "centers of excellence" will book you for one of two tests involving radiochemistry in an attempt to visualize the dopamine transporter itself, that is the substantia nigra and pars compacta where dopamine itself is produced and stored for transport as a neurotransmitter. The first is called a Spect scan, which uses an iodine 123 radiolabelled compound that binds tightly to dopamine receptors. It makes a picture of dopamine activity in the brain around where the receptors are most dense, if the picture shows small areas of low "ligand binding", it is a surefire way of proving that your troubles are due to lack of dopamine transmission. THe next is a F-19 dopa PET scan, which is a different way of doing the same thing except a different "radioactive ligand" and a different machine is used to see a lack of dopaminergic transmission.

[K.Ibsen]

I would write a list to take with me that summarizes what's going on...

I did this and read it to my doctor, whether he wanted to hear it or not, and it seemed to help considerably. There's something about the written word that seems to make things more real. It also helps if you have trouble remembering things, like I do.

I made a time-line. I started about 15 years ago with the very first symptoms and worked my way forward to the present. I used resources such as the recollections of family members, medical records, and general life events. In the end, I had a clear word picture of the progression of the symptoms.

I think a retrospective helps with diagnosing PD because a lot of us seem to have had symptoms long before we ever thought about PD, and usually, we don't think of the symptoms in terms of a major disorder like PD. I thought the stiffness and rigidity was arthritis for maybe ten years. Then a doctor gave me sinemet for RLS and guess what, the "arthritis" (and other problems) disappeared. This gave me the clue to look backward, and when looking backward, I was able to put all of the pieces together. Then came the challenge of convincing my doctors--but you know about that part.

Another thing I did was take a picture of the computer keyboard that I had used for many years. Curiously, all of the letters had worn off the keys on the left side of the keyboard while the right side looked like new. I showed the picture to my doctor and just said that there is clearly something different about my left hand. I've been programming and managing computers for nearly 30 years and had never seen anything like this--and I've seen a lot of keyboards. This provided real physical evidence that something is wrong.

Perhaps you could take a picture of your unevenly-worn shoes.

Karl

[steffi 001]

Hi, I haven`t been posting for a while but having flitted through one or two new threads your plight really spoke to me.You must be so very anxious knowing that something is amiss but not understanding what and quite rightly you deserve an answer.Can you wait 6 months for a further examination ? I think not therefore you surely owe it to yourself to return to your medical practitioner and repeat your symptoms.If you are already suffering from depression the more anxious you become,the further down you will spiral so be blowed what the doctors think about you "looking for an illness" You are clearly searching for a name for the illness or condition that you have right now.
You don`t [unless I missed this] say how old you are but it is quite usual for doctors to overlook PD in a younger person.When I first presented my symptoms to a very well established and learned GP he first sent me to a rheumatoid arthritis specialist.It was this latter doctor who wrote back to my GP to suggest I see a neurologist I was just 38 years old.
When the reults came back my GP apologised saying PD was not even in his mind for one so young.
As the others have said,PD syymptoms can be caused by a number of illnesses ,one of whiich is a copper build up in the brain [treatable ]
but as a suggestion,if you are too worried to return to your own GP so soon,why not seek the advice of an holistic practitioner.
They might be able to throw some light on what it might be,but at the very least they may give you some reassurance meanwhile.
A chiropractor actually put my mind at rest before my diagnosis.I was convinced I had a tumour but she assured me that although my symptoms were neurological,they didn`t suggest a tumour.That advice settled my mind until my appointment came up.

Wishing you peace
Steff

[hurtsobad73]

Thank you Karl and Steff. I really appreciate your ideas. Steff, I am 33(almost 34), but my symptoms started around age 30, right after I had a major surgery. I was 29 when I had the surgery, but turned 30 by the time the symptoms started. About 6 months of a span from surgery to symptoms.

I realize I am quite young, however I seem to get everything early. I had a hysterectomy at age 29 which is quite young and depressing(no more children), I had depression as a young adult, and I seem to have many neurological symptoms at a young age now.

Illnesses don't know age and therefore attack at any time. I just hope I can get some answers to mine.

Thank you all again. And if you have anymore suggestions/ideas/comments, please feel free to PM me or post.

Thank you,

Missy

[Stitcher]

ALso, consider keeping a daily journal that you can take to the neurologist in six months. That is a good amount of time to have reviewed. This way you have a document and won't have to remember what you want to say to the doc. Just summarize the content.

Include:

foot dragging
what you could or could not do that day; e.g. sweeping the floor, shifting gear in the car
sleeping habits
hygene; e.g. bathing, dressing, brushing teeth
eating; e.g. cutting food
other; e.g. fever, dizziness, muscle ache, tingling, numbness
etc. etc. you get the idea

Use Excel or Word on the computer, or just a paper journal.

:Good-Luck:

[aftermathman]

PD is clinically diagnosed, i.e. the Neuro watches your progression over a period of time to see how you change and then bases a dx on this progression. I had the scans ol 'cs mentioned and these are used as the clincher to support dx, (although often they an be inconclusive as the results entail analysis of the nature of colors !!). Insurance companies may insist on these scans prior to payout of disability policies if you do not fit the PD profile, (i.e. too young, etc).

It is v. difficult for a PD specialist to make a dx when first meeting you and I would suggest it is probably impossible for anyone on this board to help you with a dx based on a written description, sorry.

What I can say is do not be afraid to mention PD to the Neuro, if they are negative ask why, get to a state where you are satisfied. If not, then transfer to a Movement Disorder Specialist, as Carolyn originally said.

PD is dx'ed by progression, if you have no baseline to dx against then you are never going to rule it in or out. If this Neuro will not establish a baseline and cannot convince you of the reasons then you have to go to a specialist.

Good luck,
Neil.

[steffi 001]

...the age is relevant I think.I know we can`t diagnose.It would be foolish to do so,but so many young onset pd folk have slipped through the net pure;ly because they are deemed "too young" to possibly have this illness.

I hope and pray with all my heart that it isn`t PD and that it is something that can be cured.But if it is....there are plenty of folk here ready to take you by the hand and guide you along the "interesting" journey that kis PD


X

[K.Ibsen]

Steffi's right. This forum has been wonderful for me. I looked at all kinds of articles and WebMD type information. None of that compares to communicating with others who know PD from a personal perspective. The rest of the world, and I'd say that includes a lot of doctors, just don't understand. PD is so strange!

Karl