Hi,

The last year and a half I have been having some type of uncontrolled movement that has steadily progressed to the point where I have become concerned that there is something more than stress or anxiety wrong with me. A few months ago I started going to a GP to get some answers. Recently he determined that there is something going on that he can't treat and gave me a referral to a neurologist.

I have googled symptoms of movement disorders the past few months and have been going crazy trying to figure out what, if anything is going on. At times I am convinced I have some debilitating movement disorder. Other times I am convinced I am a hypochondriac imaging it all and then the reality that something IS going on.

I don't know what is going on with me. It does seem like I have some chorea type disorder going on and that is why I am posting here.

My question is, How do you go about finding a reliable, competent doctor, that you can trust to find some answers? What do you say when you get there? I don't want to go to a doctor and say that I think have this or that. I just want some answers.

I really don't think I want to be ill, but after a more than a year with my life on hold trying to figure out what is wrong, I think I would welcome any diagnosis just to get some answers.

I appreciate your reading this and appreciate it even more if you have some suggestions or want to share your thoughts..

Nick

I'm so sorry for your health issues. It must be frustrating to know something is wrong, but have docs so far unable to help figure out what it is.

People with HD usually have a family history of it; do you know if either of your parents have/had similar issues? It is also something that should be easy enough to rule in or out, with the genetic test. ANY neurologist can do that test for you. But if you can call your doc/a hospital/google & find one that specializes in motion disorders, you will be a step ahead.

For my Mom, when/if she ever agrees to go to the doc for what we know is definitely HD, my pre-screening questions are going to be whether the doc is open to trying memantine (available for alzheimer's, but very tricky w/ mixed results & opinions for hd), and if the doc has read the latest on trials of Huntexil. Any doc who knows HD should be able to discuss these things intelligently, in my opinion.

But again, as you approach diagnosis, ruling things in and out will help you know what qualifications you'll need in a long-term doc.
Sometimes those in the industry know their peers/related super-specialists the best. So as you get to know one neurologist, they may be able to help direct you to one who can help you even better.

There is no history of HD in my family so I am inclined to think something else is going on. Perhaps it is a bit odd posting my question in this forum. Mainly I was hoping to find info on how to find a dr. and what to ask/say when I get there. With no history of any movement disorder in my family, it feels strange going to a dr and tell him the things that are going on. It's difficult enough talking about it here among a group of strangers I will never meet and it even seems crazy saying it to myself.

I didn't realize movement disorders were common enough specialists in the field. I will look for one in my area. Maybe that is part of my answer. I admit to being a bit intimidated by doctors and I hate the process I've had to go through so far to get no answers and dread what is ahead of me and the expense of figuring this out. Lately I'm beginning to think life is hardly worth this much trouble.

I hope that things work out for you and your Mom.

Thanks for your reply.

Life is very much worth this trouble, stick with us and you'll see many happy people! Hope you get your answers soon!

One WARNING!
Not saying what you have might even remotely be HD, but about 4 years ago my husband was in your situation with an unknown movement disorder and he had no family history of HD either.After seeing a couple of doctors and still no diagnosis the last doctor said well, let's go ahead and run a blood test to rule out Huntington's" and since no family history we said sure "just to rule it out". Well, the test came back positive.
We were shocked and had we known at that time that it was even a remote possibility we would have arranged for more LIFE INSURANCE before getting a positive result as it's too late once you get the blood results back.
Please, keep this in mind before you give authorization for a doctor to run the HD blood test even if it's just "to rule it out". Any other diagnosis may make getting life insurance difficult or impossible after diagnosis also, so you might want to take a breathe and take care of this first before continuing your journey to diagnosis. Good Luck!

Just want to re-state that yes you ARE worth it. Docs can be a pain, and it can feel like it takes a lot of effort to not even get very far. But unfortunately you really do have to be pro-active as the patient.

If you find a neurologist that specializes on Parkinson's or Huntington's, it may be that much quicker to rule those in or out. And that same specialist may have experience on where to go from there.

Yep, it would not hurt to get some Life, Disability & maybe even long-term care insurance in place, prior to pursuing diagnosis. If it is HD or something else similar, it could make it harder to get insurance in the future. You can always cancel the insurance if your diagnosis ends up being something more minor.

And HD or not, you are more than welcome to post here. The insurance advice is "forum knowledge" from "our" perspective, that you may not have been able to get other places, but just may be applicable whether you have HD or not.

Thanks for the good info, and I appreciate the welcome.

Along with the obvious issues of wondering about where my health is going, is facing it alone as I am having to do it as a widower. So it is nice to have someone to talk with about what is going on.

I had thought about insurance, but then I think if I am disabled and unable to work how do I pay for insurance anyway. Yeah, I realize I am probably worrying about something that may never be an issue. So I need to concentrate at this point on finding a Dr and getting a diagnosis and TRY to plan for but not to worry about the future. It's like trying to fit together a puzzle when you are not sure what the pieces look like.

Thanks Again!

Yep, but get the first couple of pieces, and the rest will likely come a little easier....

How long ago did you lose your husband? Do you have any young or grown kids, or other family/friends around as support?

Guess it like the saying, "A journey of a thousand leagues begins with but a single step". One day its easy to take that step. The next one is almost to hard to take!

It was my wife. It's been two years. I have a 22 yr old son and a 26 yr old stepson and two beautiful grand daughters. Some support from friends but I'm not talking with them much about what is going on. Who wants to hear of ones ills all the time?

Yet for me it is hard to think of anything else because of the things going on in my body and brain constantly. I know its not all mental. And I've not written myself off to some debilitating disease. Still I know that something is wrong. I need to find out what. I am hopping to find some answers with Movement Disorder Specialists. That sounds encouraging. I found one near me at Emory.. I'm going to keep looking and see learn my options.

Sorry. Yes, you did say widower, not widow. Grown kids & a couple of grandkids, how nice.
Glad you found a direction to go with a doc. Keep us updated whenever you feel like it!

I made an apoiintment with Emory movement disorder neurologist. I am surprised that they are so booked. Could not get an apointment till March. Hopefully I will get an answer as to what is going on with me.

I am fearfull of the answer. Either something os really wrong with me, or I have truly flipped and my mind has gone to the other side. At this point I just want an answer, Not sure where I fit in at the moment.

good luck with everything!

Nikr I am new here as well. I started about the same time. Lots of vestibular problems and ataxia just to name a few. It's a maze trying to get answers and I have had so many dissapointments with doctors. Some just stopped, said I don't know what's wrong and left me hanging. I hope you get good news. As all of this in new to me as well. With a cag count of 36 I'm not convinced I have the disease. I am 54 now and this started six months after a blow to the head at 52. Good luck.
Mike

Mike,

It does seem difficult to get answers when you don't fit between the lines of what the experts have learned. You know your body as do I. You can see the things going on with you. Guess we both know that something is not as it should be, or as it has been.

I hope that you find answers and a solution to your situation.