I am seventeen years old, and for the past three years I have been having medical issues. So far I have been diagnosed with biliary dyskenisa, and neuroly-mediated hypotension. However, what the doctors have not been able to address are the following symptoms:
- Fatigue
- Memory Loss
- Insomnia
- Difficulty Turning Torso
- Nausea
- Bone and Muscle Pain
- Headaches in the temple on the right hand side
- Right sided weakness
- For a time I had Right Legged Paraylsis and a dropped foot
- Temors in the right side (especially the right hand)

The doctors have ruled out a stroke. On the MRI of my brain prior to the most recent one there were iron deposits in the contralateral basal ganglia of my brain, but on the most recent MRI they weren't there. The doctors are at a lose of what to do right now, and are just trying to minimize the symptoms. Could this be parkinsons? Is there anything more I can do to get a diagnosis or perhaps improve daily life? Currently I am taking l-dopamine, celebrex, bentyl, and midodrine. Also, I go to physical and occupational therapy three times a week.

Any advice would be greatly appreciated.

Hi Samantha,
Just done a very detailed reply but lost it, so only have time for a short reply.
To me, it sounds more like PD than not. One sided symptoms, difficulty turning, etc. More tests you could do are take a 100mg Sinemet, see if there is any reduction in symptoms, it is a vote for PD. Get a friend to wind your arm around in a large circle, while you completely relax. If she detects rigidity at a point in the circle, it is called "clockwork rigidity" and is likely to be PD.
Good luck
Ron

Thank you I will be sure to try the arm rotation test, and will ask my neurologist about the sinemet. So far I have seen a decent improvement in the l-dopa, and hopefully if I end up taking the Trihexyphenidyl that will decrease the tremors.

Samantha,

You are on a lot of drugs already, for a girl who has no clear diagnosis yet. All of these drugs will put a strain on your liver and kidneys which is not going to make you feel particularly well. A cocktail of drugs like this could well affect your ability to move normally. Therefore the usual clinical tests looking for signs of 'cogwheeling rigidity' will not be so indicative of Parkinsons in that context as there are too many things clouding the interpretation.

Many neurologists disagree with giving a trial period of l-dopa as a means of diagnosing Parkinsons since some with PD don't respond well to the drug. And conversely, some who are ultimately thought not to have PD may show a difference in ways that are not judged diagnostically helpful. L-dopa will alter your physiology. Worst of all, there is an argument that taking l-dopa can worsen anybody's dopamine production through 'feedback inhibition' - your body shuts down its natural dopa production because the system is being by-passed.

Over the longterm, if you really have PD it will become very evident, provided you don't cloud the situation with a confusing array of drugs altering your physiology. And this new drug being suggested to you is in the category of drugs called anti-cholinergics. If you are already experiencing memory problems, be alert to the fact that this category of drug has a reputation for worsening memory.

In the meantime, you have troublesome symptoms to cope with. I think anyone who becomes seriously ill should examine every area of their life to see if improvements could be brought to bear on it, with the goal of restoring balance or homeostasis. I would ask myself the following questions:

Am i eating a balanced diet?
Am i exercising enough?
Do i get about 8 hours sleep at night?
Am i drinking too much caffeine [coffee or soft drinks]?
Am i involved in a healthy relationship or one that i am very conflicted about?
Is there anything unusually stressful in my life that i need to face up to and deal with?
Am i having problems at work or school?

You don't have to bring your answers here; these are very personal questions for a public forum. But they may guide you to areas of your life that you need to address. A consultation with a nutritionist might also be fruitful. Has anybody suggested this to you?

i know your're frustrated but you are posting on a parkinson's board, you have serious health issues that need professional help, not amateur diagnoses. imho, you should be asking for advice on what organization to get another opinion from, not a diagnosis.

it amazes me that a doctor or drug company can be sued for making the slightest mistake while message board posters can offer diagnoses and healthcare advice all they want without the slightest caution/warning.

Samantha,

Your age would make a PD dx curious. I would be very careful about accepting such a dx without serious research and observation of symptoms. If you know anything about PD, you know that the dx usually comes years after symptoms appear, and is made by a movement disorder specialist.

We have someone here on our forum who was dx'd with PD at 27, and told at age 54 that she does not have PD. She has spent half of her life on drugs for a condition she does not have! There are others as well. Don't let this happen to you.

If it were me, I would take a close look at my lifestyle. Are you under a lot of stress? Stress makes everything the body does that is "bad" much worse! There are hundreds of causes of tremor besides PD.....rule those out.

Do you eat "right"? Nutritional deficiencies can wreak havoc in the body and are almost always NOT on the doc's checklist. Many are not detectable by blood tests, either. Most are discovered "by accident" when looking for something else.

What you can do:

1. Insist on an MRI (preferably on a Tesla 3 machine) to rule out MS and see any vascular compression that can be seen with the technology we have to date. Who knows, you may have something going on in your head that no one has even considered.

2. Get a DaT scan to see what your dopamine levels look like. Insist on this! If they are telling you that you have PD, then get this test to confirm or rule it out. It is the most advanced "test" we have for PD. At a minimum, if you do have PD, this will establish dopamine baseline levels in your brain from which progression and maybe other things can be measured.

3. Start eating organically and as fresh as possible. If you don't have a yard, try a co-op or community garden or go to farmer's markets. They are usually less pricey than a store and you get the benefit of meeting the folks who are actually growing the food you eat.

4. Start an exercise program, google the biking research for PD and some posts here on the forrm. You can get a used bike on craigslist I wouldn't do the cycling shoes where you clip in, though, they are very dangerous for everyone (just go on youtube to see some glorious wipe-out videos of folks trying to get in and out of those clips).

5. This goes without saying, but reduce the stress in your life as much as possible. Life is stressful, but you can meditate, do yoga, tai chi, etc., to try and balance things out.

I hope this is helpful. Please keep us all informed if you learn anything more.

might as well check out "mystery diagnoses" t.v. series. nothing to lose, it's all about finding the right doctor.

http://health.discovery.com/tv/mystery-diagnosis/

That is an excellent post from Muireann.

The only other thing I'd add, is that a detailed history is necessary to come to any accurate diagnosis of anything.

Today people are exposed to numerous vaccines. We see vaccine injuries on our PN forum illustrating that taking these for granted, may result in injury. Young people today, have had more vaccines, than ever before in history. Vaccines can lead to reactions in the body, that last for years, or life. We are getting more young people on PN forum now than ever before.
Some of the newer vaccines like Gardasil and Menactra.
This is an example of side effects reported just for Menactra:
Gardasil has had many controversial reports of serious injury as well.
This vaccine link explains alot about failure to report serious reactions and how that is common in our culture these days.
So a person could get a vaccine, and think nothing of it...and end up with confusing long term side effect and not make that connection at all.
http://vaccineawakening.blogspot.com...d-vaccine.html
We live in a complicated world, that is for sure!


Young people also get exposed to toxins in the environment, and these may cause problems with the nervous system. There are also parasites in the environment that can travel to the brain. Lyme, toxoplasmosis and pork tapeworm are some of them. Removing toxins, and treating any parasites are important for any treatment of symptoms.

And also, drugs given in the past can damage you, and doctors rarely expect this. The fluoroquinolone antibiotics are very damaging to the nervous system. They also lead to tendon damage and ruptures. The tendon damage may occur many months after the drug is stopped, and no one links the event therefore. It is taken many years to discover this.

So I think it would be very helpful to your doctors for you to make a detailed paper listing your medical interventions, all vaccines given and when, and all drugs given and when. I expect your parents would have to help with this, but if you do a thorough job, you might find some answers that way. People who have confusing allergic problems often benefit from this type of informational gathering. So I think any complex set of symptoms should be logged and reported this way.

Don't assume that FDA approved and available drugs are 100% safe.
They all have a downside, trade offs. Sometimes it takes YEARS or even decades to gather all the trade offs. A very common drug Darvon, was on the market for over 30yrs and finally pulled because of toxicity and ineffectiveness and it took that long to prove.
Your midodrine was pulled recently and only recently reinstated.