Don't know what to do . . .

[Lori123]

I have a collection of symptoms that appear to match up with Huntington's, though I know it could be a number of different things, or possibly nothing. But I'm distressed by them, and don't know how to proceed at this point.

First, I have severe depression. I was first diagnosed in 1992, though I believe it began at least a year before then. About two years ago, I started to have a depressive episode that was triggered by a change in medication (my insurance changed, long story). My life wasn't going exactly perfect, but prior to that, I was doing fine mood-wise, so I know the medication change started the depression, and the life circumstances just made it more difficult than it might otherwise have been.

Things got worse for me a year ago when I took a job that was supposed to be the answer to everything. It turned out to be a living nightmare. As a result of my misery at work and feeling like an utter failure, my marriage began to suffer, badly. The depression got worse, and I became suicidal.

At that point, I decided to eat the exhorbitant expense and go back on the medication that worked for me before -- Effexor XR, 225mg. My psychiatrist vanished on me at the same time -- canceled an appointment because he had a headache, then just never called me back. So I went to my regular doctor for the meds, and continued to see my therapist.

A month and a half later, I actually attempted suicide. That was in February. In March, I found a new psychiatrist who is now also my therapist. She immediately increased my dosage of Effexor XR to 375 mg. All along, I've also used either Ambien, Clonopin, or Ativan to help me sleep. Some nights I use nothing, but most nights I need something to help me get to sleep, and lately, it's also been hard for me to stay asleep without a sleep aid.

The other symptoms began a few years back -- maybe three, I don't remember. The one that bothers me most is the random muscle movements. They occur in my arms, legs, face and torso. Most would be difficult for me to duplicate intentionally as they occur in muscles I don't typically move at will. Sometimes these movements appear as exaggerated intentional movements; e.g., I'll reach to grab something and end up pushing the object forward because my reach continues. It's like the movements should be small, and I intend them to be, but they end up being theatrical.

Sometimes when I'm driving, I get very tired to the point that I am fighting to stay awake. This happens randomly, and usually as I'm driving home after work. The minute I get home, I drop on the bed and am out for several hours.

Much more rarely -- about twice a year on average -- I will get lost while driving. I have an excellent sense of direction, and can normally find my way around even strange cities very well. But during these episodes, it's always happening on a familiar drive. It lasts about 5 seconds, and during that time, I can't remember where I am, what road I'm on, or what direction I'm traveling.

Over the years since noticing these symptoms, I've asked various doctors about them, and they've always said, "You're just not getting enough sleep," hence the sleep aids. But even when I am getting enough sleep (like when my depression was at its worst and I quit my job and slept all day every day), I still have them.

Now, things are going great for me in terms of life circumstances -- I have a wonderful job (been here about 6 months, and I love it), and things are so much better between me and my husband. There's nothing particularly stressful about my life, other than the fact that I still have this awful depression. The medication change really did help, and things are good, so I started to wonder why am I still so depressed? It was then that I started to do some research and learned that the depression could be an indication of Huntington's, or another neurological disorder. That's when I connected the depression with the physical symptoms.

I am trying to find out if I have a physiological reason for this depression, or what. I've seen a neurologist, and had blood work and an EEG -- both were normal. I had an MRI, and still don't have the results, but I'm assuming it was normal because it's been a week and a half and I've heard nothing. During the MRI, when they injected the dye, I had a vasovagal response, which is completely expected for me. I'm just like that. But this time, something else happened that has never happened before, nor have I ever heard of it before -- my tongue became paralyzed and I couldn't speak. That freaked me out even more.

Am I nuts????? My psychiatrist thinks all the physical symptoms are a result of the depression, and nothing more. If the MRI comes back fine, I will actually feel defeated. I guess I'm looking for an acknowledgement that my symptoms are real; I'm not imagining them, making them up, or exaggerating them. Should I see a different neurologist, or just try to forget about it and focus on treating the depression?

My psychiatrist just added Abilify to my meds. I'm willing to try it, but that stuff scares me. I had an episode of tardive dyskinesia once after taking Compazine, and it was horrifying and I wound up with tooth damage and ridiculous dental expenses. This doctor had me on Seroquel for a while, and I felt like the same thing was starting to happen, so I got off that stuff. She thinks I overreacted, but I don't ever want to go through that again, and meds that have a chance of creating that side effect scare the holy living crap out of me. If I feel like my muscle movements get the slightest bit worse, I will drop the Abilify.

[MG (Admin)]

Firstly:- HD does not seem at all likely.
Your movement disorder issue was after taking drugs that are known to cause this...furthermore I am assuming no-one in the family has or had HD which also is an important point against this.
IN terms of physical causes of depression...a few important medical issues (such as thyroid problems) are usually tested for in a general workup.
A good psychiatrist should be able to decide whether further testing is needed depending on whether your depression is not typical in some way.

Hope that helps

Dr. Labe

[Lori123]

I appreciate the response.

You mentioned that the movement disorder came after my taking drugs that are known to cause this. All of my doctors have sworn this was not due to any of my medications. I'm wondering which drugs specifically you are referring to. The movement disorder began roughly 10-13 years after my Compazine episode, and at the time, I was only taking Effexor XR -- no sleep aids yet. I've asked several doctors if Effexor could cause this, and they have all said no, which is why I felt I had to assume this was a neurological problem.

If they are lying about it, that upsets me even more.

I've only been on the sleep aids for about a year.

I had an overactive thyroid as a child. It became normal when I was 13. I was diagnosed underactive in 2003, and since then, I have been on a low dose of Synthroid, and have it checked regularly. My test results -- including the most recent ones from two weeks ago -- are always normal.

[MG (Admin)]

Sorry I think there has been a misunderstanding.
You mentioned you were diagnosed as having " tardive dyskinesia".
Is this correct? Or was the diagnosis an "acute dystonic reaction".

thanks for the clarification

[Lori123]

I took Compazine for a couple of weeks, and one night, I went to bed, and my head wouldn't "lay down." My neck kept bending back and raising my head off the pillow. I thought it was my imagination, so I just got up to move around a little, and then my eyebrows started to raise up, and I couldn't lower them. The strange movements moved around my head and face, and I called my doctor. He didn't know what was going on. Then my jaw locked up. By that time, I had called my mom (a pharmacy tech), and she told me to take Benadryl. That was the end of it -- it was never officially "diagnosed" as anything. I was just trying to be brief.

Anyway, it was a single incident, and it scared the crap out of me, so now when any doctor's office asks me if I have any drug allergies, I say, "Compazine."

Other than that, I had never had an allergic reaction to anything until this past September, when I was doing yard work and accidentally knelt in a pile of fire ants. I didn't think anything of it, but then after a while, I broke out in hives everywhere, my face swelled up, and my throat started to close. I mention this because I was doing some research earlier today, and found a site that listed a bunch of possible allergic reaction to contrast dye, and one of them was tongue paralysis-- so I guess I have my answer on that one. But now I'm wondering if there's a connection to the ant-bite thing. Did having that reaction predispose me to having an allergic reaction to the dye?

My main question, though, is still regarding what is causing my muscle movements, what is causing my forgetfulness, and what is causing my depression to linger.

[MG (Admin)]

OK so you had an acute dystonic reaction.
Has a neurologist seen the actual movements?
If so how did they describe them?

[Lori123]

[quote="MG (Admin)"]OK so you had an acute dystonic reaction.
Has a neurologist seen the actual movements?
If so how did they describe them?[/quote]

No, he hasn't seen them. When I met with him, he asked me if they happened all the time, and I told him that no, they seemed to ebb and flow. However, he gave me the assignment to keep a diary of symptoms, and since I've been focusing on it, I've noticed that they don't ever stop -- they just are less noticeable at times.

[MG (Admin)]

you mean the movements never stop?

[Lori123]

I probably didn't say that right . . . I mean that they keep happening. I really couldn't give you a time frame for how often I have one; that seems to vary. Sometimes I may have one every 10 minutes, sometimes it's a lot longer. Today, it's been more like every 30 seconds. I've noticed that I'm having trouble typing today. The muscles in my hands just feel tired, the way your arms feel when you're lifting weights -- that slight muscle-burn feeling.

I work as a writer, so the trouble I have remembering words has been troubling to me, as well as the typing thing. The typing just seems to get a little difficult when my hands get shaky. The shakiness definitely comes and goes, and is very, very subtle. But it seems like it doesn't take much for it to affect my ability to type.

[Lori123]

First -- thank you for all your diligence. I have submitted a second donation in appreciation.

Second -- the movements have gotten worse. They are happening just seconds apart now, though it has gotten significantly worse since I started taking Abilify. After six days, I quit taking it. My last dose was two nights ago.

I heard back from my neurologist. He has referred me to another doctor who specializes in movement disorders. Unfortunately, I can't get in to see her until next June. I'm toying with the idea of checking around for a different one, but I will at least wait until January because my insurance is changing then.

In the mean time, this doctor wants me to do the 72-hour EEG. I'm skeptical, because 1) it's my understanding that an EEG won't help diagnose a movement disorder. Is that correct?; and 2) the doctor has an interest in the clinic I've been referred to.

Thanks again,
Lori

[MG (Admin)]

OK...so if the movements are so frequent, your neurologist must have seen them right?
So my question is how did he describe the movements (he may have used terms such as tic, myoclonus, chorea dystonia).

Sometimes involuntary movements are due to small seizures...hence the EEG.
Looking forward to hearing back

[Lori123]

As far as I know, he didn't see anything. He didn't tell me if he did, and I don't know what he might have written in my chart.

I understand the theory behind doing the EEG, but then why would he send me to a neurologist who specializes in movement disorders? It seems like two different tracks -- like I should check out one or the other, but not both. Although now that I know I can't get in to see the specialist for 8 months, I would be doing the EEG first.

I just hate the thought of spending thousands on an unnecessary test. Like, if I spend that much, I want it to be positive, I guess! Otherwise, I don't want to spend the money. I can't really afford it.

[Lori123]

The doctor didn't see the movements, to my knowledge.

[MG (Admin)]

Can you go back to your neurologist now the movements are so frequent...he may be able to be more specific regarding which tests are appropriate if he could see the movements...you could also record them on video and send them to him...is this an option?

[Lori123]

If that's my only option, then I need to wait until they are worse, because right now it's hard to see them. They happen all over, and you'd have to know just where to look. You could be looking at my arm, and one would happen at my ankle -- see where I'm going? I guess a neurologist would be patient enough to wait to see, I don't know. My experience with doctors has always been that things need to get BAD before they'll do anything.

What I really was hoping for here was that, if I listed all my symptoms, I might get a list of all possible causes/diagnoses.

They are:
-Sudden, jerky (but small) muscle movements in arms, hands, legs, torso, face
-Clouded thinking/inability to understand and process new information at times (I'm noticing this at work -- getting hit with lots of new information daily, and I used to be really intelligent, but now I can't follow it)
-Slurred speech (not constant, but occasional -- let's say at least once daily)
-Light tingling down the underside of my arms and into my hands, as well as along my jawline and extending to my ears
-Shaky hands -- not constant, sometimes very slight, sometimes it affects my typing
-Difficulty typing (hitting the right keys, even when my hands aren't shaky)
-Difficulty remembering commonly used words and names (common for me, not just the public at large)
-Arm muscles sometimes feel tired/burn for no reason
-Severe depression that has lasted for well over a year; prior to that, mid-level depression that began in 2008 when I changed medications
-Change in personality (I can't describe it)
-I also can't stop moving. I have ALWAYS been someone who can sit perfectly still for long periods of time, without fidgeting. Not anymore. I notice that I am moving constantly. I keep wondering if it's my way of keeping the uncontrolled movements from bothering me so much -- like if I'm already moving under my own control, maybe I won't notice all of the unintended movements.

This week, I noticed strange behavior -- it sounds weird to say it that way, but I was in meetings, and would react to things and say things that were just odd for me. Even people I had just met were asking me if I was okay. This is all very troubling. I've only had this job since April, and I don't want to lose it because people think I'm a psycho.

Other things going on with me that I wouldn't expect to be related, but I don't want to be leaving out a crucial detail:
-Racing heart (resting pulse of 104; normal is in the 60 range)
-Ovarian cysts (discovered this a year ago when one ruptured)
-Sudden development of allergy to fire ant bites that caused angioedema (this past summer)

I'm providing all this information because I am really hoping for an answer! Can you please offer me a list of possibilities? There are just so many out there, and I'd at least like something to start with. Thank you. I am getting impatient, and my husband is completely annoyed with me right now. If I can't tell him there's a possibility of a medical explanation for what's happening with me . . . I need to be able to point to something.