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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 9 of 9. This is the beginning of the thread.
Posted by Dinah on June 11, 2005, at 12:31:25
Including B-12 and thyroid.
I'm hoping it will pinpoint something physical.
Physical and fixable.
Meanwhile I went back to my narcolepsy doctor. It's funny to watch the different disciplines complain about each other, and each claim my symptoms as being related to their own field.
The neurologist had several choice words to say about my bringing my hand weakness to my internist, and told me never to do that again. He said it was clearly cataplexy related to narcolepsy and muttered something about fly by night nerve conduction companies.
I'm still skeptical about narcolepsy. The sleep study showed that I entered REM early, but not early enough to qualify as narcolepsy.
Posted by Spriggy on June 12, 2005, at 13:41:22
In reply to Getting a full complement of blood work done, posted by Dinah on June 11, 2005, at 12:31:25
I know how you must feel. I have seen a total of 5 specialty doctor's in 3 months. Each one has their own idea and diagnosis.I have had a total of 68 different tests in my blood work. One day they took a total of 9 (yes NINE) tubes of blood.
Two days later, they called and asked for 4 more tubes.
I am fairly certain at this point they have removed all my Indian blood. LOL
I was only 1/8th anyway.
Posted by KaraS on June 13, 2005, at 3:29:19
In reply to Getting a full complement of blood work done, posted by Dinah on June 11, 2005, at 12:31:25
> Including B-12 and thyroid.
>
> I'm hoping it will pinpoint something physical.
>
> Physical and fixable.
>
> Meanwhile I went back to my narcolepsy doctor. It's funny to watch the different disciplines complain about each other, and each claim my symptoms as being related to their own field.
>
> The neurologist had several choice words to say about my bringing my hand weakness to my internist, and told me never to do that again. He said it was clearly cataplexy related to narcolepsy and muttered something about fly by night nerve conduction companies.
>
> I'm still skeptical about narcolepsy. The sleep study showed that I entered REM early, but not early enough to qualify as narcolepsy.
It's so frustrating dealing with different specialists. None of them seem to have the whole picture.I hope your blood tests help to diagnose the problem.
Kara
Posted by Dinah on June 16, 2005, at 8:05:21
In reply to Getting a full complement of blood work done, posted by Dinah on June 11, 2005, at 12:31:25
Everything came back within normal ranges, except for a cluster of results that would point to a UTI. I didn't have one a few weeks ago, so it would be a recent development.
Back to psych reasons and diabetes for feeling generally lousy.
Posted by KaraS on June 18, 2005, at 16:44:07
In reply to Re: Getting a full complement of blood work done » Dinah, posted by Dinah on June 16, 2005, at 8:05:21
> Everything came back within normal ranges, except for a cluster of results that would point to a UTI. I didn't have one a few weeks ago, so it would be a recent development.
>
> Back to psych reasons and diabetes for feeling generally lousy.
Oh well, at least you know and can rule things out...Actually, what was your TSH? You may have read this before on PB but in case you haven't, a lot of doctors are still using the old standards to judge thyroid function. It used to be that a TSH of 5 was still considered in the normal range but the newer standards stop around 3. Also, the more progressive doctors treat depression by reducing the TSH to .5 (point 5). I think Pfinstegg posted something about this recently.
k
Posted by bimini on July 11, 2005, at 9:13:45
In reply to Getting a full complement of blood work done, posted by Dinah on June 11, 2005, at 12:31:25
> The neurologist had several choice words to say about my bringing my hand weakness to my internist, and told me never to do that again. He said it was clearly cataplexy related to narcolepsy and muttered something about fly by night nerve conduction companies.
>
> I'm still skeptical about narcolepsy. The sleep study showed that I entered REM early, but not early enough to qualify as narcolepsy.
I'm glad you wrote what your Neuro uttered there. It took me a while to figure out what I can't tell some of my docs as this is misleading to them. I just wish they (the Docs) could communicate with each other and share their expertise to help the patient. This is like tug of war.I am on narcoleptic drugs and my left hand/arm has been numb since accident 3 years ago. I had a negative nerve conduction test. (I am cracking up laughing, now.)
My heart rate doubled and blood pressure went up, chest pain, trouble breathing, left side has limited strength and mobility, and I went blind for 1/2 hour and lost feeling of one foot for a day. I carefully avoided telling my internist any of this, he jumped to his conclusions from the blood pressure.
I got sent to 5th EKG and then to stress testing, all the while I think this isn't cardiac related, I'm opposite MI profile. I wanted to protest, didn't do much good. At the hospital I was asked why I had this test done and I wanted to say "beats me". Then they ask the same darn questions I can all answer with a "yes but...".
I had to make a change in medication because of bp, neuropsych asked the same questions too. I just glared at her and she understood, then smiled. Now I wish she could communicate with the cardio people and all of them look at the whole instead of the pieces! Exhausted.....
bimini
Posted by Dinah on July 11, 2005, at 11:37:53
In reply to Re: Getting a full complement of blood work done » Dinah, posted by bimini on July 11, 2005, at 9:13:45
Good heavens. I hope they get together and work to help you!
The turf wars are funny, if you aren't in them. The neurologist complains about the internist, the other neurologist makes comments about psychiatrists in general, though not mine in particular. The internist sends me to and fro so much that I think I'm going to have to find a new one, because she usually is incorrect.
You'd think they all forgot that they all went to medical school before they specialized.
Good luck, and I'd love to find out what they all decide to agree on.
Posted by bimini on July 12, 2005, at 12:57:11
In reply to Re: Getting a full complement of blood work done » bimini, posted by Dinah on July 11, 2005, at 11:37:53
I'm not sure it is in them to agree. They do agree to disagree with me thus far.
I have this 'chicken - egg' feeling with Cardio and Internal guy. Internal tossed me around like a hot potato to his hospital buddies, don't know for whose benefit.
I collected the reports and tediously translate them to something I can understand.
I understand I have a murmur, 50% of all children are born with one. I developed mitral valve prolapse/dysautonomia three years ago. The valve leaks back and needs to stay efficient above 60%.
I'll get the report next week, which Internal won't explain to me of course. It'll take me a month to translate it myself, lol.bimini
Posted by bimini on July 22, 2005, at 19:25:45
In reply to Re: Getting a full complement of blood work done » bimini, posted by Dinah on July 11, 2005, at 11:37:53
Got the results:
No explanation, just strict to the point: "Your heart is fine." No discussion.Previous EKGs and ultrasounds: Dysautonomia, Barlow's syndrome, posterior valve redundancy, eccentric jet of mitral regurgitation;
Stress test: Left atrial enlargement pre-test, sinus tachycardia without ischemic segment deviation, hyperdynamic L-V function - no wall abnormalities post-test.
Murmur became pathologic two years ago. I compensate for adrenal activity and stay within midline TSH. If my vision changes are not ischemic what are they? Doc covered all the bases for his file. Origin of hole in my brain not specified. Further investigation discouraged.
Maybe now that everyone has satisfied their agendas it can be my turn? My hope was to disregard the whole concussive stuff in order to find truths.
bimini
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