Hi Moshe,
My name is Kim Simonsen, I'm from Wisconsin in the US. I am sero-negative. I was
49 when dx. with MG in February, 2005. My diagnosis was confirmed by a positive
Tensilon Test. I had a muscle biopsy in January and much lab work prior to that
which ruled out many other possible causes for my sx. I also had an abnormal EMG
the previous November.
I had respiratory and weakness in my extremities for about 2 years prior to my
dx. Initially I was treated for asthma due to a positive Methacholine Challenge.
I was put on nebulizers, multiple inhalers and oral medications without
noticeable improvement.
I have had moderate to severe fibromyalgia for 6 years. It was very difficult
for me to detect problems with increased muscle weakness for some time. So the
first thing that I actually noticed was shortness of breath upon exertion. It
started when I would climb the stairs. Then I noticed when I tried to make the
bed etc., I was
having problems. But when I rested it would improve so I didn't seek medical
help. By the way, all this time I was under the care of a Neurologist (I was
referred to him by my Rheumatologist years ago for chronic pain), so I had a Dr.
very familiar with my history to help me when all the pulmonology treatment
didn't pan out. I waited about 2 years to see the first Pulmomnologist, (not
very bright on my part); then was referred to another Pulmonologist, who in my
opinion is outstanding. He noticed something slightly off with my PFS and wrote
to my Neurologist that it could be due to weak respiratory muscles, which is
what began the above MG workup.
My symptoms are moderate/extreme SOB upon exertion. All muscles involved with my
extremities have progressively become weaker. I am unsteady on my feet and have
become much more limited with physical capabilities. I have difficulty chewing
due to fatigue of jaw muscles. I have difficulty swallowing, and aspirating
fluids,
especially when it gets close to time for my Mestinon. I have occasional blurred
vision with only minimal eye drooping. My vision gets worse as the day
progresses. But the most problematic for me is the above mentioned SOB.
Te day of my positive Tensilon test I was started immediately on Mestinon,
Imuran, and a fairly high dose of Medrol. It was explained that the Medrol would
start depressing my immune system quickly, helping to improve my symptoms. The
Imuran would start doing the job of the Medrol allowing for the steroid to be
reduced,
but it would take a while. After a few months when Imuran kicked in, my Medrol
dose was decreased. But the biggest help to me that day was when I took the
Mestinon. I was put on 3 tabs every 5-6 hours and an extended release dose at
bedtime. My condition is worsening in some ways and my MD wanted to put me on
Cellcept, but I couldn't afford it with the way my insurance is set up. My drugs
remain the same, with the above mentioned alterations, as when I was dx.He
therefore has decided I should undergo plasmapheresis tx. at a rather aggressive
schedule; every day for a minimum of a week. I have yet to start that
treatment.I am positive, after the tests that ruled out other conditions, with
the positive Tensilon test, my noticeable improvement when I take Mestinon, and
the history of all my symptoms, that I have M.G.
One very frustrating thing for me, however, was when my Neurologist referred me
to another closer to home that did plasmapheresis. For whatever reason, he
questioned the fact that I had M. G. in spite of having my medical information.
He ordered a Single Fiber EMG and Nerve conduction Studies, and both were
negative. He wouldn't give my plasmapheresis. After consulting my Neurologist of
7 years, he told me he did not agree with this MD and would proceed to give them
to me if I was able to travel to the hospitals that he has privileges in. So
that is where I stand at
this time.I'm sorry for the length of this post, but you seemed to want to know
, and I hope and pray that you get the help you're looking for.
Have a great day, God bless,
Kim
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Wednesday, August 09, 2006