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laurid8967
02-23-2010, 12:33 PM
Hi everyone -
Hope this post finds everyone feeling well. I have not updated on this flare for a while - and wondering if anyone has any knowledge about this.
As I have posted before, I went into a terrible flare just before Christmas, which included the "usual" swelling, severe joint pain, fatigue, BAD fog, etc. This flare also caused terrible neuro symptoms, including an intense headache on one side leading to a "seizure". Was sent right away to neurologist who ordered a TON of tests (EEG, MRI. CT-A, EMG, XRAY 2nd EEG). My reg doc who treats my lupus thought this was an attack on nervous system by the lupus (CNS Lupus), I was put on 60mg pred for 3 weeks, then to 40 and am still at 30 (UGH). I also started Imuran 2 1/2 weeks ago (which I will add has giiven me NO side effects - Thank you God).
OK - my last apt with neuro was EEG and though the test was really all that was done (no consult, chatting type thing, just test), his assistant stated at the end of the test (get THIS after no sleep all night!) "Well, something is REALLY wrong here...Youre EEG is is abnormal, but youre NOT having seizures...You know, these tests have all pointed to Myasthenia Gravis....it is commonly seen in people with other AI diseases such as lupus."
What?
Yeah - that was it - test over - thanks for the terrible info - have a nice day.
Now - without a doubt - she is unprofessional, should have kept her comments to herself...etc etc. BUT....Is she right? THere are ALOT of my Sx that could be attributed to MG - the weakness after exertion (I am still unable to be on my feet more than an hour without being SO WEAK, extremely dizzy and very short of breath. My Xray for lungs show no infection to acct for the shortness of breath.
But, couldnt these all be related to the lupus too? Does anyone know anything about ANY of this? I have my "sit down" with the neuro on Friday, but would love any info to bring with me to appt.
Thanks in advance
Lauri
PS - The treatment for MG? Imuran and prednisone.....ummmm....yeah.,..got those already!! LOL

magistramarla
02-23-2010, 02:57 PM
Hi Lauri,
I don't know anything about MG, but that assistant was VERY unprofessional. She should have kept the mouth shut and left it up to your doc to explain this to you.
Hopefully, SaySusie or Rob or one of of other experts will come along to help you to sort this out.
Meanwhile, hang in there and have a list of questions ready for the doc on Friday.
Gentle Hugs,
Marla

Saysusie
02-24-2010, 02:30 PM
First, I would suggest that you report the assistant to the doctor. It was not his place (or his job) to blurt that out to you. Especially when it is inconclusive!!

Now, to your question:
Myasthenia Gravis causes muscle weakness that becomes significantly worse with activity. Double vision, swallowing and speaking abnormalities, difficulty walking and using the arms are also common symptoms. Myasthenia Gravis is an autoimmune disease in which antibodies damage the acetylcholine receptors and compromise the muscle side of the nerve-muscle communication point. With the relaxation of muscular weakness, the symptoms of MG will improve. As such, doctors often prescribe cholinesterase inhibitors (chemical that inhibits the cholinesterase enzyme from breaking down acetylcholine, increasing both the level and duration of action of the neurotransmitter acetylcholine).

Lupus is a complicated autoimmune condition that can affect the nervous system in many different ways. MG and Lupus can occur in the same patient. Myasthenia Gravis produces weakness in the muscles while Lupus produces many combinations of joint pain and swelling, rash, kidney problems, eye and brain abnormalities, heart and lung problems, and others, but not often degenerative muscle weakness. MG causes muscle fatigue that can be identified objectively by specific muscle tests, such as an EMG. It is quite common for the two diseases to co-exist together.

Lupus and MG share genetic, immunological, and environmental factors. The reasons are unknown. But MG has specific identifiable causes.

I hope I've answered your question.

Peace and Blessings
Namaste
Saysusie

laurid8967
02-24-2010, 04:59 PM
Hi all -
Marla thank you for your reply and continual support...it means alot.
Saysusie - thank you so much for the reply. The info was very helpfu (as usual!). I had appt today with my regular doctor and DID inform her of what took place. She was horrified as well and said she would let the neurologist know how inappropriate and unprofessional her behavior was.
I got the impression the assistant was "one of those" who liked to show how "intelligent" she was..While setting me up for the EEG (which takes a while to put the electrodes on) she went on and on about all different medical topics (not referring to me particularly) and - God forgive me - I just wanted to say "Will you just shut up and do the test?!"....just one of those that just LOVE to hear themselves TALK!
In any case, my doc told me today that she has not received final report from neurologist, but that the abnormal EMG and EEG, combined with these additional problems of severe weakness, shortness of breath, etc. definately point to MG. She said I would need more tests however. (All just like Saysusie said! Shes good!)
I have appt with Neuro Friday, so Ill know more then...
THank you both again so much
Lauri

Saysusie
02-25-2010, 02:29 PM
You are welcome, I am glad that I was able to be helpful. I am also glad that you reported that assistant and, next time, please do say "Could you please just do the test, I don't feel well and am not up to conversing"....the polite way or

"would you just shut the F@#! Up!!" the effective way (:laugh:)
O My Gosh..I am in a scary mood today. I think I need a nap!!

Peace and Blessings
Namaste
Saysusie

laurid8967
02-25-2010, 08:01 PM
Hahhahahahaaaa! I will do that....the second one I mean!!!
Thanks for the much needed laugh!!
Lauri

debbie-b
02-26-2010, 06:15 AM
You are to funny.

BTW, I don't want to hijack this thread, but after I have read what you said about MG, I had an AHA moment. I have the weakness as well and will tell my rheumy to test me for MG.

Debbie

laurid8967
03-01-2010, 05:58 PM
Hey everyone -
Just wnated to give an update on my appt with neuro on Friday. Well, I was really impressed as they sat with me for about 45 minutes and went over each and every test. In addition, my EEG results (both of them) were very abnormal, but no seizure activity...they were very intrigued by these specific brain waves seen, particularly in my left side(where this whole business started with the crazy, pressure-like then "bubble-burtsting sensation" I had in Dec) and theres nothing more satisfying than an intrigued doctor who continues to look for the WHY of it all. Apparently, after searching through all their books, studies, EEG texts, etc. - they found my exact type of EEG in a text on ....CNS lupus..apparently these crazy things are consistent with what my reg doc (love her) and what they thought was going on!! But they LOOKED INTO IT!! SO unusual..Im so used to being told that my case "intrigues" a doctor...right before they send me on my way!! LOL
MRI showed some lesions consistent with inflammaiton from this flare as well...so CNS lupus it is.
HOWEVER - isnt there always a BUT/HOWEVER/ with us? They are almost SURE that the other symptoms Im having ARE due to myasthenia gravis...EMG and physical exam points directily to that. There is a DEFINITIVE test for MG though(what? an AI disease that has an actual test??) and to confirm I am having it on Wednesday. I was told that there is blood work too, but being on the prednisone and Imuran will alter these results. In addition, IF the test comes back falsely NEGATIVE (which can happen often) the NEXT step is to give me the medicine for it, and if it works - it is DIAGNOSTIC! Crazy huh? The medicine (Mestinon- sp) ONLY works for MG, therefore, if you DONT have it, the medicine does NOTHING. If you do, you get some of the strength back in your muscles right away.
Listen, I no more want to have ANOTHER disease than I do a colossal tooth ache - truly. But, it is not uncommon, and if I have one that has a medicine that helps RIGHT AWAY? Ill take it. You guys, this muscle weakness Ive been having is NOT something Ive seen with my lupus at all.. Its REALLY REALLY affecting my life - I hacvent been able to dry my hair(arms get too weak to finish), Im having trouble swallowing at night, and I am FULLY winded(no wheezes clear Xray)with exertion and my LEGS...its really bad. So - yes - there is part of me that says - OK, maybe Ill havew another thing to deal with - but there is help for it - a medicine that can improve my quality of life. I have BARELY been able to leave my house since January - save doc appts and a couple runs to the market (both of which completely did me in).
So - thats where Im at - Ive got a Lupie brain (in more ways than ONE - lol) and possibly a little friend for my lupus. "Say 'ello to my lettle freng!!" That was my Scarface imitation...sounds better in person!!
Love to all and thanks for all your well wishes and pryaers
Lauri

magistramarla
03-01-2010, 11:23 PM
Hi Lauri,
It's so great that you finally have some definite answers!
Now that they are certain about the CNS Lupus, is it treated any differently than just lupus? Imuran is an immunosuppressant, right?
Keep us informed about the MG diagnosis. It will be interesting to hear the results. Wouldn't it be great to take a pill that helps?
My rheumy is sending me to a neurologist in two weeks, so this should be interesting. I saw one in Texas, and he ruled out MS and other things, but my new rheumy wants her neuro buddy to give his opinion. It should be an interesting appointment.
Good luck with your journey!
Hugs,
Marla

laurid8967
03-02-2010, 08:12 AM
Thank you Marla -
The CNS lupus is tresated the same - immunosuppresants and prednisone (and plaqunil of course). The Imuran has not started working YET (it will...IM BANKING ON IT..lol), buit when it does I can taper down from 30mg of the pred. I actually wish I was on more than 30mg - I felt better on 40 and even BETTER on 60 - but the side effects suck...no other way to say it. I havent however, gained ONE pound! I think the Imuran may be counter acting that aspect? Not sure. My face is as round as as basketball, but no weight gain. Also, my appetite us usually HUGE on prednisone (common side effect) and I have NO appetite - again, I think its the Imuran. But Ive been good about eating right even when I dont feel like it.
Anyway, I see my lupie doc tonight (she leaves on her honeymoon tomorrow..ahhhhh!!) so I have to write down everything I need while shes gone, and then neuro test tomorrow. I will def keep you updated though.
One thing Ive learned from this flare is that with lupus - anything goes...it can really affect any organ system. Im grateful they caught it...and probably prevented some trouble had it gone untreated you know?
Please keep me poosted as well about your neuro appt too...they ruled out MS with me also - the lesions they see on my MRI are not demyleating, but vascular - thus, the lupus interpretation.
Hope your having a good week so far
Love Lauri

Desleywr
09-06-2011, 06:22 PM
This sounds so much like me too! I have had MS ruled out and yes they also talked about MG for the muscle weakness. So eventually I got the Lupus with an extra still being tested for polyMyotosis or de....... Something along with the possible of Scleraderma. MG has been mostly ruled out due to my EEG and the way my muscle deteration started out. I find each flare up my muscles are getting weaker and weaker. One thing I have been told is not to have the EMG test done when my flare up is over and to wait till the next one and to get the CRP etc blood tests done before the EMG test as the test effects the blood results. Hope this helps
Desley