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Home > Archive > Lupus Support > July 2006 > Practicing Medicine
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Practicing Medicine
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| What a day this has been ~ not sure if it will end up as a good one or
not. Time will tell.
For three months, I have become progressively weak, to the point that I
now cannot walk without either crutches or a walker. In June I began
medical leave from work, and the doctors (lots of them!) have been
trying to figure out what the heck is going on.
The first official 'guess' was CIDP. That lead to an EMG with NCS. The
results of that were nor normal, but it was determined that I do not
have CIPD, and instead probably have Multifocal Motor Neuropathy. To
determine if that was correct, I had to have genetic testing, and wait
five weeks for the results.
Today I went to see a new neurologist, who specializes in MMN, and he
says that is not it. His 'guess' is a muscle wasting disease, such as
Myasthenia Gravis. He ordered more blood tests, and a consult with yet
another neurologist, who specializes in muscle wasting diseases.
Since I have had ALOT of time to think, I have been trying to figure
out what the heck is going on, and the only "change" in my life about
the time that this 'hit the fan' was that I started taking Plaquanil
.... so I asked if this might be connected. His response was that it was
an excellent question, and that he would talk with my Rheumatologist.
About two hours later, my Rheumatologist called, told me she had a
wonderful conversation with the Neurologist and that he was thinking
this might be a reaction to the Plaquanil. She suggested that I stop
taking it and see what happens, because otherwise, the next step is a
muscle biopsy, and if we can figure out what is happening without all
these invasive tests, that would be a good thing. I agreed, and as of
this evening, I am no longer taking Plaquanil. I will see the
Rheumatologist on 8/1/06 and the new Neurologist on 8/9/06.
Now ~ mind you I am not angry that this possibility was thought of by
me, and the Rheumatologist was thinking that it was a recommendation
from the Neurologist. What I am beside myself about is that all of this
could have been avoided if the Rheumatologist's staff had listened to
me back in April when I was beginning to have problems, and was unable
to get through to her!
As a result of all this, I am on medical leave from my job. My job is
only protected until the day after Labor day, if it is the Plaquanil ~
although I will regain use of my arms and legs, it is going to take
physical therapy for months to regain what I have lost in muscle mass
and strength. And, as I have worked very hard mentally and emotionally
to accept that I would not be able to return to work, now this is up in
the air!
So, here I sit, with nothing to do but wonder what is going on ...
should I go ahead with applying for Social Security disability, should
I let my work know that maybe I will be back, how do I get emotionally
ready for both possibilities at the same time ~ or how do I find a way
to live in this 'gray area' until something is decided.
Anyway ~ that was my day ... hope everyone else had a better one!
Susan
| |
| Shelagh 2006-07-27, 4:28 pm |
| <quote>
Plaquenil Side Effects=20
Adverse Effects:
Less frequently, muscle weakness, vertigo, tinnitus, nerve deafness, =
headache, nervousness, and emotional lability have been reported with =
this class of drugs.
<end quote>
the snippet above was taken from a website here:=20
http://www.rxcarecanada.com/Plaquenil.asp?prodid=3D1362
and was very clearly written... where are your doctors???
good luck to you with the 'gray area' and I would suggest to your docs =
that they find some 'gray matter' for themselves and soon!!!
hugs
(((Susan)))
from Shelagh
http://clik.to/lupus
"Zuska" wrote in message=20
> What a day this has been ~ not sure if it will end up as a good one or
> not. Time will tell.
>=20
> For three months, I have become progressively weak, to the point that =
I
> now cannot walk without either crutches or a walker. In June I began
> medical leave from work, and the doctors (lots of them!) have been
> trying to figure out what the heck is going on.
>=20
> The first official 'guess' was CIDP. That lead to an EMG with NCS. The
> results of that were nor normal, but it was determined that I do not
> have CIPD, and instead probably have Multifocal Motor Neuropathy. To
> determine if that was correct, I had to have genetic testing, and wait
> five weeks for the results.
>=20
> Today I went to see a new neurologist, who specializes in MMN, and he
> says that is not it. His 'guess' is a muscle wasting disease, such as
> Myasthenia Gravis. He ordered more blood tests, and a consult with yet
> another neurologist, who specializes in muscle wasting diseases.
>=20
> Since I have had ALOT of time to think, I have been trying to figure
> out what the heck is going on, and the only "change" in my life about
> the time that this 'hit the fan' was that I started taking Plaquanil
> ... so I asked if this might be connected. His response was that it =
was
> an excellent question, and that he would talk with my Rheumatologist.
>=20
> About two hours later, my Rheumatologist called, told me she had a
> wonderful conversation with the Neurologist and that he was thinking
> this might be a reaction to the Plaquanil. She suggested that I stop
> taking it and see what happens, because otherwise, the next step is a
> muscle biopsy, and if we can figure out what is happening without all
> these invasive tests, that would be a good thing. I agreed, and as of
> this evening, I am no longer taking Plaquanil. I will see the
> Rheumatologist on 8/1/06 and the new Neurologist on 8/9/06.
>=20
> Now ~ mind you I am not angry that this possibility was thought of by
> me, and the Rheumatologist was thinking that it was a recommendation
> from the Neurologist. What I am beside myself about is that all of =
this
> could have been avoided if the Rheumatologist's staff had listened to
> me back in April when I was beginning to have problems, and was unable
> to get through to her!
>=20
> As a result of all this, I am on medical leave from my job. My job is
> only protected until the day after Labor day, if it is the Plaquanil ~
> although I will regain use of my arms and legs, it is going to take
> physical therapy for months to regain what I have lost in muscle mass
> and strength. And, as I have worked very hard mentally and emotionally
> to accept that I would not be able to return to work, now this is up =
in
> the air!
>=20
> So, here I sit, with nothing to do but wonder what is going on ...
> should I go ahead with applying for Social Security disability, should
> I let my work know that maybe I will be back, how do I get emotionally
> ready for both possibilities at the same time ~ or how do I find a way
> to live in this 'gray area' until something is decided.
>=20
> Anyway ~ that was my day ... hope everyone else had a better one!
>=20
> Susan
>
| |
| Sherry 2006-07-27, 4:28 pm |
| Hugs, thoughts and prayers are with you!!!
Sherry
| |
|
| Wanted to provide an update:
I did not take the Plaquanil last night or this morning, and this
evening I was able to walk from the living room to the bathroom and
back twice without assistance! I did need to use the grabbar to get
back up off the toilet, but since I have been dealing with this since
April, it is not surprising that I have little muscle tone.
Last night I did a Google search of Plaquanil+Muscle Weakness, and came
across a website about wrong diagosis. At this site, I found a posting
about Plaquanil, and these were the possible side effects that were
listed:
Abdonimal cramps, abnormal eye pigmentation, anemia, bleaching of hair,
blind spots, blisters in mouth and eyes, blood disorders, blurred
vision, convulsions, decreased vision, diarrhea, difficulty focusing
the eyes, DIMINISHED REFLEXS, dizziness, emotional changes, excessive
coloring of the skin, eye muscle paralysis, "foggy vision," halos
around lights, headache, hearing loss, heart problems, hives,
involuntary eyeball movement, irritability, itching, light flashes and
streaks, light intolerance, liver problems or failure, loss of hair,
LOSS OR LACK OF APPEITE, muscle paralysis, MUSCLE WEAKNESS AND WASTING,
nausea, nervousness, nightmares, psoriasis (dry, scaly, red skin
patches), reading difficulties, RINGING IN THE EARS, skin eruptions,
skin inflammation adn scaling, skin rash, vertigo, vomiting, weariness,
WEIGHT LOSS.
ALL PEOPLE ON LONG TERM THERAPY WITHTHIS DRUG SHOULD HAVE A PHYSICAL
EXAMINATION PERIODICALLY, INCLUDING TESTING OF KNEE AND ANKLE REFLEXES,
TO DETECT ANY EVIDENCE OF MUSCULAR WEAKNESS.
All words that are in caps are symptoms that I have ... the caps are
not in the original. I wish I kept the website bookmarked, but I did
not, just copying the information to a WORD document, so that I could
print it out and take it to my appointment on 8/1/06.
I, too wonder why this was not caught back in May, when I went to see
my Rheumatologist. She could not get a response in trying to test my
reflexes, and I specifically remember saying to her that that Plaquanil
was helping with the pain, but appeared to have revealed the underlying
weakness. I know I said it just that way, too.
Anyway, there is no way to go back and change anything. I post this to
let you know that there appears to be some improvement, to thank all
for the concern, and as a cautionary tale to all about blindly assuming
that the doctor knows best. I had read up on Plaquanil ~ but only in
off the rack books, and they only focus on the potential eye problems.
I thought I had educated myself. Now I know better.
Susan aka Zuska
| |
| Mermaid 2006-07-28, 4:27 pm |
| Susan,
I am not a doctor. Just experienced in rebuilding muscles that have wasted
away from lack of treatment when I first came down with Lupus 30 years ago.
The doctor had me take a multi-vitamin that had zinc in it to help me gain
back my strength. You may be already taking one but I don't think it would
hurt. But don't take it on an empty stomach. And try to keep moving.
Eventually it will come back gradually. It will take a while for the meds to
go out of your body. You might even think about some kind of water therapy.
That would be less taxing on your muscles. Oh by the way I'm on Plaquenil
too. Hoping I don't have to be on it long.
Well wishes,
Paulette
"Zuska" <Snowey95@aol.com> wrote in message
news:1154063768.290452.47690@h48g2000cwc.googlegroups.com...
> Wanted to provide an update:
>
> I did not take the Plaquanil last night or this morning, and this
> evening I was able to walk from the living room to the bathroom and
> back twice without assistance! I did need to use the grabbar to get
> back up off the toilet, but since I have been dealing with this since
> April, it is not surprising that I have little muscle tone.
>
> Last night I did a Google search of Plaquanil+Muscle Weakness, and came
> across a website about wrong diagosis. At this site, I found a posting
> about Plaquanil, and these were the possible side effects that were
> listed:
>
> Abdonimal cramps, abnormal eye pigmentation, anemia, bleaching of hair,
> blind spots, blisters in mouth and eyes, blood disorders, blurred
> vision, convulsions, decreased vision, diarrhea, difficulty focusing
> the eyes, DIMINISHED REFLEXS, dizziness, emotional changes, excessive
> coloring of the skin, eye muscle paralysis, "foggy vision," halos
> around lights, headache, hearing loss, heart problems, hives,
> involuntary eyeball movement, irritability, itching, light flashes and
> streaks, light intolerance, liver problems or failure, loss of hair,
> LOSS OR LACK OF APPEITE, muscle paralysis, MUSCLE WEAKNESS AND WASTING,
> nausea, nervousness, nightmares, psoriasis (dry, scaly, red skin
> patches), reading difficulties, RINGING IN THE EARS, skin eruptions,
> skin inflammation adn scaling, skin rash, vertigo, vomiting, weariness,
> WEIGHT LOSS.
>
> ALL PEOPLE ON LONG TERM THERAPY WITHTHIS DRUG SHOULD HAVE A PHYSICAL
> EXAMINATION PERIODICALLY, INCLUDING TESTING OF KNEE AND ANKLE REFLEXES,
> TO DETECT ANY EVIDENCE OF MUSCULAR WEAKNESS.
>
> All words that are in caps are symptoms that I have ... the caps are
> not in the original. I wish I kept the website bookmarked, but I did
> not, just copying the information to a WORD document, so that I could
> print it out and take it to my appointment on 8/1/06.
>
> I, too wonder why this was not caught back in May, when I went to see
> my Rheumatologist. She could not get a response in trying to test my
> reflexes, and I specifically remember saying to her that that Plaquanil
> was helping with the pain, but appeared to have revealed the underlying
> weakness. I know I said it just that way, too.
>
> Anyway, there is no way to go back and change anything. I post this to
> let you know that there appears to be some improvement, to thank all
> for the concern, and as a cautionary tale to all about blindly assuming
> that the doctor knows best. I had read up on Plaquanil ~ but only in
> off the rack books, and they only focus on the potential eye problems.
> I thought I had educated myself. Now I know better.
>
> Susan aka Zuska
>
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