I am seventeen years old, and for the past three years I have been having medical issues. So far I have been diagnosed with billary dyskenisa, and neuroly-mediated hypotension. However, what the doctors have not been able to address are the following symptoms:
- Fatigue
- 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.

I want to welcome you to Neuro talk. This is a place where you can ask questions, get some help, and find some compassion all at once. I would post also to the parkensons forum. There is a search bar up at the top. If you type in that disorder, it will bring you to that forum. I am only suggesting that as a starting place for your questions as you are taking a medicine I recognize for that disorder. Keep posting your questions to differnerent neruo forums and keep asking. There will be others who will respond to you. You may even make a friend or two. I am sorry you are going through alll that at such a young age. There will be many more who will be able to direct you better than I can. I found this site when I was scared and lost too, and found alot of help. I am glad you found us, and I sincerely hope others will be along shortly to help you around the site. You can go to any forum you want and jump in to any conversation that is going on. It is a warm and friendly place. I hope somebody can help you find some better help for your symptoms. It is frustrating, when they can't find the source for symptoms. I am here too, if you ever need to talk. I stay around the site to welcome people here and to try to give some bit of direction. Take care Samantha, keep posting. I will be thinking of you and keeping you in my prayers.

Thank you so much. It really gives me hope to know that I am not alone. The past few years have been extremely trying, and any direction and advice I can get is an unbelievable help. Thank you again.

Sometimes you have to re-post if you don't get enough of a responce you need. It doens't happen often. I just want you to know I stay with those who respond back to me, and help get them directed. ginnie

Thank you! I am getting a better hang of how this web site works now, and I posted in the parkinsons forum. By the way do you think genetics testing is worth it? I mean I know it is if I want to have kids down the road, but it is extremely expensive and the syndrome that they say it could be says there is really no help for it anyway. Elhers Danlos Syndrome Type 4? They said it was a long shot. I kind of feeling like my doctors are just spit balling ideas and seeing what sticks at this point. I am just worried if whatever I have is going to deteriorate more...

Hello samantha, I will look up what the doctors have diaganosed you with. I haven't heard of this before, so please forgive my ignorance. I have learned so much about conditions these past few years. I try at least to get a handle on what people have, by going to the internet. I will do some research in the next couple of days to see what I can find out. Today I have company coming over for the game.
I also want to say something about the fear you have about the condition getting worse. I have the same fear. I have degenerative joint disease, degenerative disk disease, and these arn't going to be getting any better either. I posted or vented this morning to Mark and Eva. They have such a spiritual center about them, I go to them for support. I get scared too as I don't want any more cervical fusions, I have had two already. I need two new ankles, and a toe joint will be replaced the end of the month so I can walk. I get frightened at how much more I want to go through. There are several more conditions I have, that I have to deal with too. All of it gets overwhelming at times for me as it does for many others on this site. What I have learned is that we are here for each other, and it is OK to tell about your fears and feelings, good grief all the stuff people have to deal with....
Even with my troubles, this site has shown me I am not alone to deal with my conditions. That in turn does help me to help others. It is very true, that so many suffer more than I do. It humbles you. I tear up when I read some of the posts that present. Hang in there Samantha, and I will be around, needing support just like you do. WE are not alone. ginnie

The Elhers Danlos Syndrome Type 4 just seems like such a long shot, I met with the geneticist because the neurologist thinks whatever I have is either genetic or evolving because I am so young. Although, I am not far enough along to be diagnosed with a neuroly degenerative disease, and I am no doctor I feel that is the way in which things are going. I am ok with that I just really want answers at this point so I can take it from there and get involved in a clinical trial or something. I am sorry to hear of everything that you have been experiencing, and truly hope everything gets better. I have found that trying to keep as busy as possible can be of some relief, so you aren't thinking about what is going on as much. Staying positive is probably the most difficult thing to do, and yet it is the most beneficial if we are able to achieve that. Try to find things you love, and surround yourself with people who make you happy so that you have the strength to continue on. I hope your surgery goes well, and if you ever want to talk I am here. I feel like this is the first time I can really talk about how I am feeling with dealing with all of my medical issues, and I want to thank you for talking with me. I feel like such a burden on my family that I don't like to seem weak to them. Even with that I feel like everyone who knows me, especially my mother treats me like I'm fragile, and it drives me crazy. I love the feeling of being part of a community that really understands.

Hope you have heard from a few other folks now, on other threads. I am still thinking about you, and hope you get some answers from people who know more about this than I do. Mrs.D is one in particular I hope you hear from. ginnie

Thank you I have. I have been posting about things separately because it seems when I post things together people get confused. Perhaps I am not able to articulate my medical history as well as I should. My medical history is pretty confusing. You are so kind, I wanted to thank you again.

It is OK to talk at any location on the forums. I believe you have gastro problems on top of Elhers, on two different forums, that is fine to do. I try to keep up a bit and see if you can get some of your questions and concerns answered. I have gallbladder trouble, or did, had it out, had no choice. I also have other stomach troubles and see an upper GI doctor. Has there been some information coming your way? I am here if you need to talk. take care, ginnie