myopathy

Hi Paula, I am very sorry to hear of your current situation - it's difficult dealing with eye issues
and now this.

You have seen a neurologist? Have you had a muscle tissue biopsy? It appears -- in active GED
inflammatory -- inflammatory cytokines are detected in higher amounts in the soft eye tissue. Maybe
this would be evident in other muscle tissue if it is related to GED...going out on a limb here ;o(

Re-test ANA - lupus??? Repeat SED rate???

See here for some suggestions that might not have been considered:
neurologychannel.comdiagnosis.shtmlOpen ↗

I have quite a lot of research for Graves' Eye Disease (GED), but haven't come across anything yes
that suggests other body muscles are affected the same way as the eye muscles and soft tissue.

Your Graves' eye disease specialist has no ideas?

I hope very much that you improve soon, Paula. Kindest regards, Diana

"Paula" <[email hidden]> wrote in message "]news:[email hidden]...

Quoted message said:

Grave's ophthalmopathy attacks the eyes muscles directly. The eye muscle disease is not caused by
high *or* low thyroid levels; it is caused by the same antibodies that attach the thyroid.

I was diagnosed, a few years ago, with both Hashimoto's hypothyroidism *and* Grave' opthalmopathy
(more correctly known as Thyroid Eye Disease). I have never been hypERthyroid, only hypOthyroid,
but there is no question of my eye disease. There are no tests for the majority of thyroid
antibodies, but I was negative for those few tests that do exist.

Now I am suffering badly from some sort of myopathy. My arms are weak, and my legs are extremely
weak. I cannot walk more than ten feet and must use a wheelchair. All of my blood tests are
normal, including all thyroid levels, and my symptoms also indicate that my thyroid replacement is
perfect. Tests for all manner of other diseases are normal, too: I don't have MS, a brain tumor,
Addison's (not even borderline), myasthenia gravis, myositis, anemia, B12 deficiency, etc. No
numbness, tingling, or any other symptom, either. My reflexes are slightly hypertonic. My sed
rate, ANA, and C-reactive protein are all low. The only truly abnormal results were EMGs
indicating "subclinical myopathy", not sufficient, the neurologists told me, to explain my degree
of disability.

Is it possible that my arm and leg muscles are being attacked now in exactly the same way as my
eye muscles and thyroid are? If so, what can be done? Normal thyroid levels are not helping. I
take Celebrex daily as treatment for my thyroid eye disease.

Thanks for any help you can offer. My physicians are all baffled, which is quite an uncomfortable
situation for me.

Paula B.

from Mary Shomon:
google.casearchOpen ↗

"Paula" <[email hidden]> wrote in message "]news:[email hidden]...

Quoted message said:

Is it possible that my arm and leg muscles are being attacked now in exactly the same way as my
eye muscles and thyroid are? If so, what can be done? Normal thyroid levels are not helping. I
take Celebrex daily as treatment for my thyroid eye disease.

Thanks for any help you can offer. My physicians are all baffled, which is quite an uncomfortable
situation for me.

Paula B.

Paula, I would doubt very seriously if your arm and leg muscles are being attacked by thyroid
antibodies. This is fairly specific to a particular organ, namely the thyroid, with the exception
being thyroid related eye disease. Perhaps you need to look at other issues beyond the endocrine
system as well. If you believe it to be endocrine related there are several sites to go to to see if
anything rings a bell, as far as symptoms, because that is what the doctors have to go, same as you,
beyond the tests you've had run. Now, if it were me, I would look at the website
www.thyroidmanager.org and see if any of the Graves symptoms match up. The eye and muscle problems
are ringing a bell, but I can't remember what it is...but I remember a runner having some issues
with Graves that sound similar. Look that direction and see what you can find. My time online is
somewhat limited at the moment or I would do a quick search myself.

Good luck.

John R.

"Paula" <[email hidden]> wrote in message "]news:[email hidden]...

Quoted message said:

Grave's ophthalmopathy attacks the eyes muscles directly. The eye muscle disease is not caused by
high *or* low thyroid levels; it is caused by the same antibodies that attach the thyroid.

I was diagnosed, a few years ago, with both Hashimoto's hypothyroidism *and* Grave' opthalmopathy
(more correctly known as Thyroid Eye Disease). I have never been hypERthyroid, only hypOthyroid,
but there is no question of my eye disease. There are no tests for the majority of thyroid
antibodies, but I was negative for those few tests that do exist.

Now I am suffering badly from some sort of myopathy. My arms are weak, and my legs are extremely
weak. I cannot walk more than ten feet and must use a wheelchair. All of my blood tests are
normal, including all thyroid levels, and my symptoms also indicate that my thyroid replacement is
perfect. Tests for all manner of other diseases are normal, too: I don't have MS, a brain tumor,
Addison's (not even borderline), myasthenia gravis, myositis, anemia, B12 deficiency, etc. No
numbness, tingling, or any other symptom, either. My reflexes are slightly hypertonic. My sed
rate, ANA, and C-reactive protein are all low. The only truly abnormal results were EMGs
indicating "subclinical myopathy", not sufficient, the neurologists told me, to explain my degree
of disability.

Is it possible that my arm and leg muscles are being attacked now in exactly the same way as my
eye muscles and thyroid are? If so, what can be done? Normal thyroid levels are not helping. I
take Celebrex daily as treatment for my thyroid eye disease.

Thanks for any help you can offer. My physicians are all baffled, which is quite an uncomfortable
situation for me.

Paula B.

Paula, I am so sorry to hear this. I think of you often because it was your experience with Celebrex
that made me brave enough to risk my previous problems with other NSAIDs. It has changed my health
for the better, both my eye pain and joint and muscle issues. I will always be grateful to you for
this. I won't ask any obvious questions because I know by now you, of all people, have investigated
all obvious causes. My only thought based on what you write is that it reminds me of a neighbot who
rather suddenly developed severe weakness that no tests showed a cause for. She was eventually
diagnosed by exclusion with migraine related brain swelling (not marked on CatScan) and it slowly
improved over a period of months to normal. I hope something similar happens to you. Meanwhile, you
will be in my thoughts and prayers. Mag

[email hidden] (Paula) wrote in message news:<[email hidden]>...

Quoted message said:

Grave's ophthalmopathy attacks the eyes muscles directly. The eye muscle disease is not caused by
high *or* low thyroid levels; it is caused by the same antibodies that attach the thyroid.

I was diagnosed, a few years ago, with both Hashimoto's hypothyroidism *and* Grave' opthalmopathy
(more correctly known as Thyroid Eye Disease). I have never been hypERthyroid, only hypOthyroid,
but there is no question of my eye disease. There are no tests for the majority of thyroid
antibodies, but I was negative for those few tests that do exist.

Now I am suffering badly from some sort of myopathy. My arms are weak, and my legs are extremely
weak. I cannot walk more than ten feet and must use a wheelchair. All of my blood tests are
normal, including all thyroid levels, and my symptoms also indicate that my thyroid replacement is
perfect. Tests for all manner of other diseases are normal, too: I don't have MS, a brain tumor,
Addison's (not even borderline), myasthenia gravis, myositis, anemia, B12 deficiency, etc. No
numbness, tingling, or any other symptom, either. My reflexes are slightly hypertonic. My sed
rate, ANA, and C-reactive protein are all low. The only truly abnormal results were EMGs
indicating "subclinical myopathy", not sufficient, the neurologists told me, to explain my degree
of disability.

Is it possible that my arm and leg muscles are being attacked now in exactly the same way as my
eye muscles and thyroid are? If so, what can be done? Normal thyroid levels are not helping. I
take Celebrex daily as treatment for my thyroid eye disease.

Thanks for any help you can offer. My physicians are all baffled, which is quite an uncomfortable
situation for me.

Paula B.

Hi Paula, an afterthough -- the NGDF might have information - if you do go there remember not to
mention the names of drugs though ;o( There are lots of people with GED so there might be an
incident similar to your current situation. Kindest regards, Diana

"Paula" <[email hidden]> wrote in message "]news:[email hidden]...

Quoted message said:

Is it possible that my arm and leg muscles are being attacked now in exactly the same way as my
eye muscles and thyroid are? If so, what can be done? Normal thyroid levels are not helping. I
take Celebrex daily as treatment for my thyroid eye disease.

Thanks for any help you can offer. My physicians are all baffled, which is quite an uncomfortable
situation for me.

Paula B.