Frustrated!!

[Aggie_Ama]

I have an appointment Monday with my GP and the vampires. I guess by end of next week I will know if my metabolic panel looks normal. My insurance covers a nutrionist so I will keep that in mind as well.

it may be something in your diet/ daily regimen. I have to avoid caffeine

Did you do a food diary? I write what I eat but not drink. I am voluntarily weening myself off caffeine starting tonight. Right now I drink 24-60 (!) ounces of Diet Dr Pepper a day plus 64+ ounces of water (hmmm wonder why I am always peeing?). I really cannot stand to sit at a desk all day and not drink so I am constantly drinking which keeps me from constantly eating. But I want to get that to 12 oz soda and eventually ZERO. I am not even sure it is the caffeine, maybe it is the fizz and I can do Sprite or something caffeine free? Food for thought although I must say limiting caffeine before did not provide any noticeable results which was annoying.

The only thing I could see would be that when I did WW for a short time, it sort of encouraged you to eat packaged stuff and do the point thing. Not sure if you're eating packaged stuff but I would start looking at some of that. I try not to use any artificial sweetners because I realized it was driving my eating off the charts. I was always hungry! Hope you figure it out...

I am not eating much pre-packaged food. Just the lunches which I have done for 5 years and sometimes yogurt. But I am looking at what I ate the days I have had the tremor.

[Fredwina]

I used to keep a food diary.

[Aggie_Ama]

Ugh!!!! I went to my family practice doctor today and after doing the monkey tests (neuro baselines) he diagnosed a tremor. He is having me do a fasting blood panel in the morning just to be sure but he really thinks it will be unremarkable. At this point I haven't decided if I will make an appointment with my neurologist on one hand the leg tremor is much worse than before but the hand one is not. I hated primidone and the foggy feeling it left, I just don't want to take meds for this until it gets too bad to ignore. So I have to see what the blood test shows before calling my neurologist. I think I am in denial right now, I was supposed to be the rare person that it went away on.

On a side note, my doctor from today joined the practice earlier this year and I decided to switch from the founding doctor I had seen. I really like my current doctor they should make his bedside manner part of the curriculum in med school!

[redrhodie]

Oh, that's too bad! I hope you can get it in control again without meds. I think you should go off the diet and see what happens.

[Aggie_Ama]

Red- My doctor seemed supportive of Weight Watchers as a method. He was very interested in the correlation of weight loss and tremor flare up. He said he was headed to lunch after my appointment and planned some case reading, guess he was really interested. I am taking it day by day and week by week.

Still in denial about the return and the possibility of anti-convulsants again. I haven't hit rock bottom like before and I am still somewhat winning over the tremor at the moment. I will see if they get worse before calling the neurologist. Definitely still in denial that they will get worse.

[tulip]

Do you drink alot of caffeine--coffee, sodas? I can't imagine they would be helping the situation. I'm glad you have a doctor who seems interested and has good manners!

[Miranda]

Hey hun... btw, I DO totally know what you mean about having to fight to get tx. I have had my share of exhausting go-arounds with the docs and ins co about things. For them, it's just another pa. For us, it's our lives feeling like they are literally falling apart before your eyes when you can't control what you body is doing! That alone is enough to make a person crazy. Bleah.

I'm glad you like the new doc. That sounds like it was a good move. Sometimes fresh eyes can over turn a rock that wasn't before. I think sometimes when the docs get frustrated that they don't have the answers, they just shut down. Some just have bed side manners like that of an sob.

IMHO , I wouldn't wait to call the neuro doc. Mine was always hard to get into for one thing. Maybe some new meds may have come out? I know what you mean about that too. Ghee, which of the lesser evils do I pick here??? Feel messed up by drugs... Or... feel messed up by the condition?

One of my things I got for tx was the IVIG (gamma globulin therapy). I'm sure you already know this, but it's a blood by product that's the antibodies extracted. Blood banking tid bit, it takes 10,000 donors to make up ONE bag of that stuff. I figured by the end of my ditch effort tx attempts I have a population of six figures worth of other peoples blood parts in me. Hmmm... wonder what effects progressive science will find from that 20yrs from now.

But, I was happy to get it, as it was the only option for me. Again, lesser of the evils from ideal (be well). So thank you to folks who give blood. I don't know what would have happened to me without you.

I thought for sure too, just like you, that I was the lucky rare one that got better at the neuro's office. I told him, "I think it must be nice to see one of your pa get cured! ...I know with most of the population you work with that does not happen". Well, sure enough, when the beast reared her ugly head again, I was SOOOO devastated. I thought, is God punishing me for "bragging"... I TAKE IT BACK! But, it's just how the neuro junk goes sometimes. Actually, for me, when I tried to ignore it, I found I started having almost panic attacks... denial fighting reality in my mind. Then I'd say, "ok, Miranda, take yourself to the doc GF cuz this is not working either".

Maybe if you call and make the neuro appointment, it will bring good Karma? The beast will crawl back in it's cave at the thought of a fight. Fwiw. I wish I had a better answer. But just know you have positive thoughts coming your way. However you play it. (((hugs)))

Miranda

[Aggie_Ama]

Well Miranda, I took the neuro appointment hoping for good karma or peace of mind. My neuro is so good I have to wait until November 17th to get in. That is an established patient appoitnment! In the mean time my tremor is amplifying and upseting me greatly. My friends do not understand how much this hurt the last time (not super close friends) and this weekend was razzing me about the shaking. I feel awful and angry. My GP said if it gets worse he will help me but he wants me to see the neuro. He said he would give me valium or what I used to take and call my neuro. I am still trying to hold out on the medicine. It isn't bad but it is now noticeable and that hurts. It is humiliating and frustrating. So it looks like I will be back on the meds in 30 days but then again maybe just maybe it will sink back into remission.

[OakLeaf]

Aw, that s*cks.

Vent your frustration here all you like if it helps.

(((((Ama)))))

[bmccasland]

more hugs Ama. I can't add anything, but we're here for you.

Hopefully your Docs can figure something out. Having your body do things with a mind of it's own can certainly be fustrating. Unfortunately telling your hand to "Sit!" "Stay!" just doesn't seem to work.

[SouthernBelle]

A-A, I'm so sorry. Those don't sound like very good friends. To be honest, I would cut them off and if they ask why, tell them.

[tulip]

(((Aggie))). Any chance that the neuro or regular doctor can provide some insight into what is causing the tremor, as opposed to simply treating the effects? So sorry to hear that you are having to deal with this!

[maillotpois]

I have a friend who is really struggling with tremors right now, and it's tough. I agree with those who said people who are nosy or comment about it - what sort of friend are those?? I can't believe anyone would be so insensitive in this day and age, but it is happening with my friend as well. She tells people she really loves Michael J. Fox and is trying to emulate him.

Hang in there.

[Aggie_Ama]

Thanks for the virtual hugs, I feel like I am on a pity party but I like Miranda I just thought I wouldn't see these again and not so soon after my neuro claimed me to be in remission!

About my friend.... Really he is a sweet guy we see a couple times a year. When the first flare of the tremors happened DH was interning away, my friend took me for margaritas (alcohol supposedly helps but not me), to a movie, anything to cheer me up. But being just a friend he wasn't there when I was crying my eyes out because I couldn't control it and he wasn't there when my mother drug me to Baylor because she was scared of how depressed I got. He is just the type that sometimes is a jerk and would die if he knew it hurt. It actually was a little smirk inducing, I couldn't keep the ice in my drink from clanking. But yes anyone else would have really hurt and if I put him in his place for it he would have felt terrible. I still should have told him where to go, he and I even talked about it being back but I just don't think he always connects with sensitivity. There are people you can excuse, this is one of the few but only this once.

Sarah- Yep I had complete strangers ask me if everything was okay. Tell me to take a deep breath and it would pass. Doesn't work that way like Beth said I can't tell my hand or leg to stop! I hope your friend is able to find something for hers. I read an excellent book she might look into "I Can't Stop Shaking". I got it through www.wemove.org, a fabulous resource for movement disorders. Both really helped me before because I didn't know anyone else with this and was desperate to hear it wasn't just me even if I felt like it.

Tulip- I am trying to stay off valium or getting primidone until I go to the neuro. I have never seen a competent one when I was completely drug free. I plan to write (or type depending on how bad they get) my questions so I can't forget a one. Like why on earth is this weight correlated and what new meds are out there.

We had discussed Botox but he would send me back to Baylor for that because he doesn't feel anyone in Austin in qualified to do it on my dominant hand. But that isn't a guarantee and it is hard to get insurance to cover. My mom said just no deep brain stimulation which is a scary treatment for the worst conditions.

[emily_in_nc]

I am so sorry for what you are going through -- I can't even imagine how frustrating and embarrassing that would be. I know it would be very upsetting to me!

As for comments from well-meaning friends, it's so hard to know what to say in situations like this. I work with a great guy who has hand tremors, and to be honest, I have no idea why. From time to time he'll comment on his terrible handwriting or that his hand is shaking, but I'm too shy to ask him why -- don't want to say something insensitive or nosy or to pry, though I am curious. He's been like this for years, and it doesn't appear that it's gotten worse, but no better either.

I sincerely hope that you can get to the bottom of your condition and find an appropriate treatment that doesn't leave you with terrible side effects. I really feel for you!