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Home > Archive > Neurological Disorders > September 2006 > And the latest 'guess' is ....
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And the latest 'guess' is ....
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| My muscle biopsy was determined to be 'inconclusive.' The neurologist
went back and looked
at all the tests that have been done, and called today ~ the latest
contestant for What' Wrong With This Picture is (drum roll) Myasthenia
Gravis!
In the next two weeks, I will have another EMG (this will be my third!)
and also a 'diagnostic medication.' I was told that if I respond to
this medication, that will prove that I have MG. If not, I suppose they
will spin the Wheel of Ill Fortune to see what other possibility this
might be.
At this point, since I know that whatever is wrong is going to be a bad
thing, I believe that I hope it is MG ... after all, there is
treatments for that, and I am tired of all these tests that prove
nothing as I continue to physically waste away.
I will let you all know what the next chapter reveals ...
Susan
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| Zuska wrote:
> My muscle biopsy was determined to be 'inconclusive.' The neurologist
> went back and looked
> at all the tests that have been done, and called today ~ the latest
> contestant for What' Wrong With This Picture is (drum roll) Myasthenia
> Gravis!
>
> In the next two weeks, I will have another EMG (this will be my third!)
> and also a 'diagnostic medication.' I was told that if I respond to
> this medication, that will prove that I have MG. If not, I suppose they
> will spin the Wheel of Ill Fortune to see what other possibility this
> might be.
>
> At this point, since I know that whatever is wrong is going to be a bad
> thing, I believe that I hope it is MG ... after all, there is
> treatments for that, and I am tired of all these tests that prove
> nothing as I continue to physically waste away.
>
> I will let you all know what the next chapter reveals ...
>
> Susan
>
I really don't understand this newsgroup. There is very little, if any,
back and forth conversation. I feel for what you are going through. I
was diagnosed with peripheral neuropathy two years ago. I was later told
I had neuromas in both my feet. So, I had surgery to remove them, and
today, along with the numbness, I still have very sore feet. I am now
beginning to get lancing pain in my baby finger of my left hand. I am
very worried. I had the emg...skin biopsy...blood tests...all came back
negative. There is so much they don't know. I'm slightly anemic and they
don't know why. I've had a colonoscopy and all my other blood work is
normal. But my white count and red count is very low. I'm not tired, but
the test results suggest there IS definitely something wrong. It's all a
what and see approach...so I do share your frustration.....Jack
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| V.Jean.G. 2006-09-28, 2:32 am |
| My personal experience leads me to believe most medical tests are
useless detecting today's diseases. There are hundreds, if not
thousands, of viruses out there that have been ignored for nearly a
century by the medical professions. Because of this, viruses have grown
stronger. Except for AIDS and possibly hepatitis, there is very little
research on viruses but hope this changes soon. So many are told their
lab tests are normal but living near the edge. Viruses usually don't
circulate in the blood but move into the cells. This is why nothing
shows in a blood test.
V.Jean.G.
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JJ wrote:
> I really don't understand this newsgroup. There is very little, if any,
> back and forth conversation. I feel for what you are going through. I
> was diagnosed with peripheral neuropathy two years ago. I was later told
> I had neuromas in both my feet. So, I had surgery to remove them, and
> today, along with the numbness, I still have very sore feet. I am now
> beginning to get lancing pain in my baby finger of my left hand. I am
> very worried. I had the emg...skin biopsy...blood tests...all came back
> negative. There is so much they don't know. I'm slightly anemic and they
> don't know why. I've had a colonoscopy and all my other blood work is
> normal. But my white count and red count is very low. I'm not tired, but
> the test results suggest there IS definitely something wrong. It's all a
> what and see approach...so I do share your frustration.....Jack
Have you had your one and two hour post meal blood glucose checked?
Like 70% of folks, my type 2 diabetes has never shown up on a fasting
test, only on post meal glucose testing. I had very severe peripheral
neuropathies (since reversed by diet and supplements) years ago due to
undiagnosed type 2 DM. Any blood glucose reading above 140 leads to damage.
Susan
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V.Jean.G. wrote:
> My personal experience leads me to believe most medical tests are
> useless detecting today's diseases. There are hundreds, if not
> thousands, of viruses out there that have been ignored for nearly a
> century by the medical professions. Because of this, viruses have grown
> stronger. Except for AIDS and possibly hepatitis, there is very little
> research on viruses but hope this changes soon. So many are told their
> lab tests are normal but living near the edge. Viruses usually don't
> circulate in the blood but move into the cells. This is why nothing
> shows in a blood test.
>
> V.Jean.G.
>
I'd go further and say that even when tests do exist, consensus
guidelines for testing and diagnosis are so badly formulated that the
tests aren't used or interpreted properly and many diagnoses are missed.
Susan
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| V.Jean.G. 2006-09-29, 2:35 am |
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I agree, Susan. Many illnesses misdiagnosed because of so few studies
on viruses or sophisticated medical equipment setting in a corner
somehwhere not being used at government labs. None of the routine lab
tests detect viruses, at least none have in my case. Viruses can
inflict intense pain. Some can even eat through glass.
V.Jean.G.
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| x-no-archive: yes
V.Jean.G. wrote:
> I agree, Susan. Many illnesses misdiagnosed because of so few studies
> on viruses or sophisticated medical equipment setting in a corner
> somehwhere not being used at government labs. None of the routine lab
> tests detect viruses, at least none have in my case. Viruses can
> inflict intense pain. Some can even eat through glass.
>
> V.Jean.G.
>
But that's not what my point was. Often, the tests *are* used and the
cutoffs for normal/abnormal are improperly set by consensus guidelines.
There are many things that can cause similar symptoms and syndromes,
other than viruses. In my case, borrelia and ehrlichia, sometimes high
blood glucose reported as "normal,", etc.
Susan
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| Susan wrote:
> x-no-archive: yes
>
> JJ wrote:
>
>
> Have you had your one and two hour post meal blood glucose checked? Like
> 70% of folks, my type 2 diabetes has never shown up on a fasting test,
> only on post meal glucose testing. I had very severe peripheral
> neuropathies (since reversed by diet and supplements) years ago due to
> undiagnosed type 2 DM. Any blood glucose reading above 140 leads to
> damage.
>
> Susan
My glucose has gone from 126 to 102. My cholesterol has gone from 278 to
181 and my triglycerides has gone from over 400 to 85, but that hasn't
done anything for my "so-called" pains. The nervous system is really a
challenge. The term "practicing medicine"....it is so true. Doc's hand
out medication without any real research, and we become the guinea pigs.
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JJ wrote:
> My glucose has gone from 126 to 102.
That sounds like a fasting glucose. If your post meals ever exceed 140,
they could well be the source of your pain.
> My cholesterol has gone from 278 to
> 181 and my triglycerides has gone from over 400 to 85, but that hasn't
> done anything for my "so-called" pains.
Those lab numbers won't do anything for your pains, unless they reflect
bg that is always under 140, even 45-60 minutes after meals.
> The nervous system is really a
> challenge. The term "practicing medicine"....it is so true. Doc's hand
> out medication without any real research, and we become the guinea pigs.
The tragedy is that drugs, rather than prevention, are all they seem to
think are in the toolbox.
Susan
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| jenalyn 2006-09-29, 4:31 pm |
| > JJ wrote:
>
> The tragedy is that drugs, rather than prevention, are all they seem to
> think are in the toolbox.
>
> Susan
Well, doctors are partially to blame, but pharmaceutical companies are
mostly at fault. They [pharm. co.s] "bribe" doctors to prescribing drugs
with trips, cash, etc., and also condition the population into believing
they need certain drugs through advertisements on TV/etc. It's rather
disgusting and disturbing how pervasive they [pharm.co.s] have become today.
Also, virii and bacterias are continuing to evolve so it is very difficult
to "erradicate" the two completely. We see TB on the rise and are becoming
very drug-resistant. In fact, TB vaccines are generally not given in the US
where this rise is occuring as in other parts of the world. I believe we
are on Hep H or probably beyond.
There isn't money in making antibiotics so its no wonder that many bugs are
antibiotic resistant. If there were more incentives for pharm companies to
develop new antibiotics, then this would not be a huge problem. General
government funding for research has been declining since the Cold War days.
Granted, I may be wrong here since I haven't much knowledge of this but this
is the general impression I have.
There are many diseases and conditions that are undiagnosed, and it may be
decades if before they have a name let alone treatment. There are new
fields of "medicine" and "research" being developed because humans are so
complex. Endocrinology and Neurology are slowly coming together because of
how our nervous system and hormones are intertwined.
Sorry for my random mumblings. The only answer that may be available to you
is pain management for your "unknown" condition. Best of luck in your
search for an answer.
Jena
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jenalyn wrote:
> Well, doctors are partially to blame, but pharmaceutical companies are
> mostly at fault. They [pharm. co.s] "bribe" doctors to prescribing drugs
> with trips, cash, etc., and also condition the population into believing
> they need certain drugs through advertisements on TV/etc. It's rather
> disgusting and disturbing how pervasive they [pharm.co.s] have become today.
It's not quite as simple as that. They also have all the drug
investigators and regulators on the tak and in their pockets,
financially speaking. Medical journals are dependent upon their
advertising dollars.
> Also, virii and bacterias are continuing to evolve so it is very difficult
> to "erradicate" the two completely. We see TB on the rise and are becoming
> very drug-resistant. In fact, TB vaccines are generally not given in the US
> where this rise is occuring as in other parts of the world. I believe we
> are on Hep H or probably beyond.
> There isn't money in making antibiotics so its no wonder that many bugs are
> antibiotic resistant. If there were more incentives for pharm companies to
> develop new antibiotics, then this would not be a huge problem.
I have to disagree. It's not a problem because we don't have enough
drugs, it's a problem because we dump 80% of the antibiotics
manufactured in the U.S. into feedlots and onto produce in farming.
General
> government funding for research has been declining since the Cold War days.
> Granted, I may be wrong here since I haven't much knowledge of this but this
> is the general impression I have.
Almost all research is NIH funded, in the U.S. Including the early
research into drugs and treatments, which our tax dollars pay for. It
is handed over to drug companies free of charge as an inducement to get
them to continue the investigations. Then we get bled again with high
drug prices when something comes to market as a result of our seed funding.
> There are many diseases and conditions that are undiagnosed, and it may be
> decades if before they have a name let alone treatment. There are new
> fields of "medicine" and "research" being developed because humans are so
> complex. Endocrinology and Neurology are slowly coming together because of
> how our nervous system and hormones are intertwined.
Too bad. The rest of our bodies are equally interdependent.
Susan
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