Hi,

I'm in the middle of a very painful HD induced dilema. I currently have a very stable, comfortable job in a city which I (nor my wife) no longer can deal with (NYC). We are having a baby in a matter of days. I have accepted a better paying, but probably more demanding position in Boston which has automatic acceptance to a LTD plan. We are set to move at the end of July.

All was wonderful until I went to a HD clinic to be looked at (my mom (57 yrs, 42 CAG's) is in mid stage HD). The neurologist said he noticed some disturbing signs when I had to do the rapid pattern movement tests. He said he could certainly not say I have HD and I have no signs of chorea, but told me I have a 55-45 chance of having the disease. I was crushed.

Since this meeting, actually starting the very day after, I've been having some nasty problems with almost constant, micro muscle spasms. They're mostly in my temple area of my head but also happen randomly all over my body. I was advised to see a shrink, which I've been doing. I'm now taking Zanex and Wellbutrin. This has helped my original problems, but now seems to have started some problems with my hands and my feet. My short term memory and day to day organization have been a little rough for a few months, also I have been noticing increased temper tantrums and fits of rage.

Now for some questions-
1) My mom wasn't diagnosed until her early 50's, would it be common for me to get the disease at the age of 32?
2) Could the anxioty of a coming baby, move to new city and starting a new job be causing me to become overly paranoid about HD?
3) Assuming I have the very early signs of HD, would it be a bad idea to try and start a new job (It's not to late for me to cancel the whole thing)?
4) Could things become much worse in the next year or two?

Thank you all for your help, having this group here is one of the only comforts I have in trying to deal with this wretched disease.

Jim

Hi Jim!

I am 44 and HD+ for 3 years now. I'll try to answer your questions one by one:

1 & 2) Not common, but yes you could be experiencing early symptoms at your age. Lots of mitigating factors such as the stress you deal with daily in your job, commuting, family changes, job changes, fear of not knowing if you have HD, etc.

3) You mentioned that the new job has an automatic LTD plan, does your current one and are you in it?

4) HD is a degenerative brain disorder so yes it continues to get worse as time progresses. I've noticed that when I had lots of stress in my life, like moving, starting a new job, finding new places, etc. that my symptoms increased.

I continue to experience the "micro muscle spasms" that you have described. They seem to occur in the same places over and over again but can also occur anywhere. Are you considering having the blood test done? If so, I can help you plan right now so you can take care of the important details......Phil

Thanks Phil,

Some more questions-

1)My mom has 42 CAG's. My sister was tested with 43 CAG's. There's a site at [www.geneclinics.org] which claims that time of onset is very closely tied to the number of repeats. Should this be believed? If so why wouldn't my neurolgist mentioned it? My mother onset definately seems to be in the listed range.

2) I've read that if inherited from a mother the CAG number is about the same, is there a maximum number (~) that could be gained (or lost)?

3) My current job is extremely stable with a good disability plan. I've even discussed it with my boss who told me that I could work until I didn't feel like coming in anymore. I work for an international labor union, so these are the kind of issues they fight for continually. The problem is that I despise NYC and want to leave badly.

4) Were these 'micro muscle spasms' one of the first symptoms you had? Do they happen mostly in your temples?

I would like nothing more than to get the blood test out of the way, but I believe I should wait until I'm fully vested in my insurance plans with my new company. At this time I plan on starting the process, getting my results (out of pocket, not through insurance). Finally seeing a neurologist, using my insurance, and, if needed, notifying my employer as soon as possible. Just to make sure they can't get around the American's with Disibilities Act and hopefully this would assure me of getting disibility benefits. The disability benefits are actually my biggest stresser at this point. I'm ready to fight this disease, but not having income scares me to death. Does this plan seem workable? Any input you might have would be greatly appreciated, if I want to change my mind and stay in NYC the decision needs to be made in the next few days.

Thanks,

PS- how many CAG's do you have?

Jim, the CAG repeats only explain about 2/3s of the variation in ages of onset and only at the aggregate level. In other words, they predict the average age of onset of a group of people with the same CAG repeat number. They don't predict onset very well for individuals.

There isn't a maximum number that could be gained or lost but I believe that within + or -3 is common for inheritance from the mother.

I wanted to tell you that a couple years ago, over a six month period, several at risk friends became very anxious about their genetic status and decided to test. They became so stressed out that they developed various symptoms such as depression, anxiety, poor memory, twitching, and temper outbursts that convinced them (and me too although I didn't say so) that they were probably positive. Every one of them tested negative and those symptoms went away. It's amazing what stress and anxiety will do to you.

Still, I don't blame you for being concerned about your disability benefits. Is there a probationary period for your new job before the LTD kicks in? Can you convert your current short term and long term disability policies to private pay policies in the interim?

I am glad to read that you are ready to fight this disease. The research is moving quickly and I am convinced that we have every reason to hope for treatments soon.

Hi,

I just wanted you to know that if your mother has HD, then you are automatically put in th 50-50 risk category. As time passes, that chance diminishes slightly.

Don't count on your mother's CAG count to help predict onset probability. There is tremendous variability in even one family. There surely is in my family. Ages of onset -70-60-42...and we still wait for the others to see what happens.

When I was obsessing with HD, shortly after both my sister and mother tested positive (within days of each other), I began to experience eye twitching, arm twitching, etc.. Nothing I did would make that twitching go away! I would rub the area thinking that would help, but it didn't. I also began to have temper outbursts. I also began to step on the gas pedal and let off and step on and let off, just like I remember both my mom and grandmother doing when they drove. Oh yes... I noticed HD symptoms in one of my sons, too, and you know that means I surely had it, too. I thought of little else.

Well, I finally was tested and..guess what? Negative. Immediately after that most of my "symptoms" disappeared.

There is no way to know if you have HD, especially if the symptoms you're having are very subtle. Give yourself the benefit of the doubt until you know for sure or until your symptoms are overt and obvious. The 50% chance of being positive must be weighed against the very real 50% chance of being negative.

Living with HD in the family is stressful, but being tested is even more so. Don't rush into it. Give yourself time to think out the future for your life either way. Go through the proper testing protocol.

Try not to let fear of the future rob your present. HD progresses fairly slowly. Chances are, if you have it, you will be much the same 6 months from today as you are today.

I have to admit, even now, I find myself wondering....could that lapse in memory be HD? Why was I so clumsy with those dishes? Did they make a mistake when they tested me? Old habits...

I can't help with the job decision. It's a tough call. I wish you the best, whatever you decide.

salt