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| I forgot to add the post to my response, sorry.
Zinn
> Hi everyone ~
>
> I hope no one minds if I just whine a bit here. I say that because
> there is absolutely nothing anyone can do about this situation until
> Tuesday at the earliest.
>
> My primary diagnosis is Sjogren's Syndrome, and I also have Lupus. In
> March, I changed to a new rheumatologist, and after extensive blood
> tests I was started on Plaquenil. That was about the beginning of
> April.
>
> I was working at the time, and continued to work ~ being rather pleased
> at the reduction of pain that I was experiencing. However, by the
> beginning of May, I was unable to walk without using a cane. Prior to
> that, I did not use any assistance with walking, so this was quite a
> shock to me.
>
> By the end of May, it became clear that I was not able to do my job.
> The second half of May, I only worked 44 hours and took 40 hours of
> sick time! I arranged with my employer to take time off under the FMLA
> (Family Medical Leave Act). That covers me, and protects my job for 12
> weeks.
>
> My last day at work was June 9, and therefore the 12 weeks end the day
> after Labor Day. That is three weeks away, and I still am not able to
> walk without a walker when in the house, and I use crutches (the short
> ones with the cuff around your forearm) when out of the house.
>
> I have been to see three neurologists ... neurologist #1 thought that I
> had something called CIDP, ordered an EMG with NCS (not fun!) and the
> results of that showed that it was not CIDP, but maybe Multifocal Motor
> Neuropathy. That lead to genetic blood tests and a referral to
> Neurologist #2 ~ who said that I do not have MMN, but that I seem to be
> suffering from an unknown muscle wasting disease. He referred me to
> neurologist #3 and also ordered more blood tests.
>
> Toward the end of the appointment, I told him that because I was not
> working, I had lots of time to think about what was happening, pointed
> out that this all seemed to start when I started the Plaquenil, and I
> asked if there was any chance that these two things could be related.
>
> His reaction was that this was an excellent question, and said that he
> would talk with my rheumatologist. I went for the blood tests and went
> home.
>
> About two hours later, I got a phone call from my rheumatologist
> stating that she had a 'lovely' talk with the neurologist who said that
> maybe this was due to the Plaquenil, so she wanted me to stop taking
> it. I agreed to do so.
>
> Now, on to neurologist #3, who specializes in muscle wasting diseases.
> After a rather thorough (and somewhat painful) examination, he
> proclaimed that I did indeed have measurable loss of muscle mass, and
> that it could be due to the Plaquenil, but that this was not likely. He
> stated that this type of reaction is known to occur in about 1% of
> people who take Plaquenil for many years, thus if the Plaquenil is the
> culprit, I am an unusual case. He said that he was going to go read the
> raw data from the EMG, and that most likely he would order another EMG
> ~ not as extensive and also a muscle biopsy to determine what was going
> on. He also told me that he would do this on Thursday and call me
> either Thursday or Friday to let me know what the plan was.
>
> So, here I am after midnight on Friday ~ no phone call ~ and two
> appointments on Monday, which means that even if he calls on Monday, I
> won't be home to get the call! (One of the appointments on Monday is to
> see if there is a resolution to the blood in my urine, which I hope is
> the case ... my Creatinine has dropped from 1.4 to 1.1, so that is
> good!)
>
> I realize that apparently I am being 'special' ~ although I would
> prefer to be special in some other way ~ but this waiting is making me
> crazy! I accept that I will not be able to go back to work ... although
> I am not happy about that. And, this past Monday I did go to Social
> Security and filed for SSD. Just trying to cover all the bases.
>
> I was wondering if anyone had a reaction to Plaquenil anywhere like
> what may (or may not) have happened to me, and if there are any
> suggestions about dealing with the symptoms (painful joints and
> fatigue) that the Plaquenil was helping with.
>
> Thanks for listening ~ sometimes it just helps to talk with people who
> understand.
>
> Susan
>
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