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Old 10-10-2007, 10:52 PM #1
lailavia lailavia is offline
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Unhappy My skin biopsy was negative

The one done at John Hopkins, as well as the tilt table...though the doc for that was great and said my beta blockers probly threw it off. My neuro doc called me while I was in grocery store, and said there was nothing else he could do for me. The one from Hopkins ,who said the "bulk" (?) only one being morning tremors (thats what they call them) that I could see, were probly psychiatric.

The Heart doc does want me to get a stress test due to some problems with ecg at tilt. He said "why would you think your problems were Pyschiatric" and seemed me to want to push for more answers, I wish he was my doc. I asked him how and he said "well they need to do more testing."...well who does and How do I get more? I have had so many tests the insurance comany probly had to hire a new employee just for my paperwork!!! I guess I am glad they may have found something cardiac that may be causing some sx....he also recommeded a doc for me and I have an appt set up. Kind of sad, to have to be glad a sx was found!!!!It sounds really weird but I hope you know what i mean....I have pushed and shoved my way for tests for years and have come up with nothing .....just more and more problems....

I am going to give up on things for now. I don't know what to ask for anymore, I don't know if my problems are neruological or not, but I do not that my arms are weak and can't sustain activity. I told him I would let him know if i got severly worse and that was that. I am thinking of calling back and seeing if he even knows I have fibromyalgia so that he doesn't write some dumb report up again. If it is all from fibro so be it. But why get so bad all of a sudden after so long? Oh I was dx with low Vitamin D which can cause muscle weakness, so who knows, maybe those supplements will help!!!! I guess I will wait till I fall on my face till I look further. I am too wiped out to even try anymore. All my endocrine bloodwork was great too!

Except adrenal gland still suppressed so still on cortisone, which is making me deathly depressed. She just changed me to dexamethasone in hopes of helping a little. Still thinks that is from epidural steroid shots. I am not a happy camper. if someone could just help me with the awful morning shakes and weird things I could deal with the rest. Maybe the cardiac testing will help show something. So it is good I had that tilt test. I expected more from Hopkins somehow, maybe a referral to another specialist, I really feel like I am dying when I wake up.....but then again....lets wait on cardiac tests....it feels like I am having a seizure or stroke or some kind of attack....there is no way to explain obviously............as I seem to be the only one on this planet with the problem!!!!!!!! Sorry but I am really bummed. I'll get better....the cortisone stuff has got to go!!!
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Old 10-11-2007, 01:23 AM #2
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Default I'd like to tell you

that I also have that shaking feeling in the morning before I get out of bed.it wakes me up,and I think I am having heart pals or flutters,but I am not sure if I really am.

I started taking CoQ10,and it has really helped. I don't know for how long it will keep working but it's working for now. Please don't feel so alone and discouraged.if you have one caring doctor that beleives you that is worth more than 10 average ones.

I have also had my share of useless thoughtless doctors. I think some of them just stopped caring somewhere along the way.

But the sahking was exactly how you described.I even thought it may be coming from my brain or spine,I just don't know sometimes.
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Old 10-11-2007, 10:33 AM #3
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Since that heart doc was good could you ask him who he could recommend as for more docs? The shakey maybe something from the heart and the arm issues.So maybe that test will give you more answers. I know how frustrating this is cause I have a lot of unknown as well. I'm sorry your feeling so ill but maybe if you call back that doc to get some more docs that he may work with. I know we have talked about team approaches and how they are hard to achieve. I will also say I have been to what are suppose to be great hospitals such as cleveland clinic and ucla and have expected more to really feel let down. I often feel they have so many patients they really don't work as hard as they should. I don't know the answer just your not alone.
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Old 10-11-2007, 07:13 PM #4
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Lailavia my dear. Let me apply my superior intellect to your problem. Your terrible symptoms that you suffer in the morning are due to one of two things:

a) Psychiatric -- you are making them up because it is so much fun to go see your neuro. Or,
b) Your NEURO IS SO FREAKING STUPID THAT HE CAN'T FIGURE OUT THE CAUSE AND IS TOO ARROGANT AND CRUEL TO ADMIT THIS!

Pardon my screaming. I think that this should put things in perspective for you.

I hope you find a good doctor and some relief. I really feel for you.
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Old 10-11-2007, 10:33 PM #5
lailavia lailavia is offline
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Default Oh thank you

For the nice replies! You hit the nail right on the head there Dakota....the cardio doc (he gave me his card, professor of medicine) didn't think it was pyshciatric! I will send for neuros report and see what he said and then write him a "nice" letter....he only met me twice in my life so why he would say that is beyond me. and as for the Shakes you get , Aussie 99, how long does it last?Have you ever asked docs about it? Mine can go on for up to an hour along with coughing and nose blowing. I find that if I lay down and just listen to the radio it goes away faster. Only happens when I come out of a deep sleep. I will have to get some answers for this when I get more anger or energy! It was nice having the one doc say that to me though. Never liked the other one anyway. And I am in middle of SSDI case i can't let him blow it for me by making it seem like I am not sick! YUk
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Old 10-11-2007, 10:59 PM #6
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It lasts no more than 5 minutes,but it's like internal shaking that seems to be somehow related to the heart. Or it may be the spine? Who the heck knows anymore. No it is not imaginary,as it has woken me up too.

As I said it has settled down alot when I started the COQ10. Getting anxious makes things worse.

You definately need to get it checked out by a doc who cares.
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