Frustrated!!

[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!