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Please HELP me!

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Unread 01-29-2013, 09:52 PM   #1
karen P
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Default Please HELP me!

I am going to give your smart noggins something to think about. I have seen multiple Neuro's and 3 out of 5 have confirmed dx of MG--Seronegative with 2 positive EMG's, 1 negative (1/2013)--Today Johns Hopkins Neuro stated, he does not think I have it, but doesn't know what I have.
I started 2009 with eye twitching, loss of peripheral vision, and needed glasses to help. (astigmatism on eye dr exam) then 3 months later, I had severe neck weakness and strain to causes headaches, and a COMPLEX Migraine where speech was effected. CT was fine...then 2 months later, shortness of breath, chest pressure when exercise or steps, Cardiologist sent me to get a ct of my chest and my Thymus was enlarged to 6cm...so they removed it.
All this and EMG gave me the MG dx. After this, I stayed on Mestinon and Imuran. I went in for a knee replacement, and the day after surgery, I stopped swallowing and was intubated. I have excessive saliva production while having MG symptoms/crisis. Then 4 months later, after small exercise again, experienced facial drooping, severe body twitching, loss of bowels, vomiting, and become paralyzed for days, and get IVIG and steroids in the ICU. I can't move my muscles to get my hands legs or body off the bed for 4 days, gradually coming back. When home, very weak for 2-3 weeks, still having double vision, muscle twitching, speech problems. After another surgical procedure, the same symptoms, and was intubated due to respiratory muscles being weak, under 1 liter of volume. This time, after intubation, I had to be on a NG tube b/c not being able to swallow for 4 days afterward. There was now 5 crisis', 3 intubations--the neuro doc states "crisis' are usual, but I don't believe that she has MG."
What do you believe could be the culprit? I need to get life back...I have symptoms of shaking muscles daily...
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WiggyAnn (01-30-2013)
Unread 01-29-2013, 11:09 PM   #2
bny806
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wow, you have been through the ringer!!! So sorry to hear about all of that!!! I don't have a firm diagnosis, but take IVIG every 2-3 weeks, hopefully someone else can give you more insight... I do however have the muscle twitching/ shaking thing... I feel like I have a cell phone vibrating at times, it's really strange. Also after surgeries i have had difficulties and almost had to get intubated with my c section epidural.. couldnt' move my tongue or face or anything after it for a long time..

Have they checked for some of the periodic paralysis? (Hypokalemic/hyperkalmeic periodic paralysis)? Not sure if they can get so severe that it would result in intubation... Lambert eaton can also be affected by anesthesia.. and my last thought would be charcot marie tooth - it is an anesthesia affected disorder - but it may be that it can have a relationship with hyperthermia, not sure if it causes paralysis.. just a few thoughts..

Good luck! keep us updated!
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Unread 01-30-2013, 08:58 AM   #3
karen P
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Quote:
Originally Posted by bny806 View Post
wow, you have been through the ringer!!! So sorry to hear about all of that!!! I don't have a firm diagnosis, but take IVIG every 2-3 weeks, hopefully someone else can give you more insight... I do however have the muscle twitching/ shaking thing... I feel like I have a cell phone vibrating at times, it's really strange. Also after surgeries i have had difficulties and almost had to get intubated with my c section epidural.. couldnt' move my tongue or face or anything after it for a long time..

Have they checked for some of the periodic paralysis? (Hypokalemic/hyperkalmeic periodic paralysis)? Not sure if they can get so severe that it would result in intubation... Lambert eaton can also be affected by anesthesia.. and my last thought would be charcot marie tooth - it is an anesthesia affected disorder - but it may be that it can have a relationship with hyperthermia, not sure if it causes paralysis.. just a few thoughts..

Good luck! keep us updated!
fasciculations are uncontrolled muscle twitching in muscles I have used that day--I can move the arms if the twitching starts, but the muscles won't stop twitching until I rest them for a while. The paralysis is not chemical based, more inability to move with NO MUSCLE STRENGTH. The ability slowly comes, and with a great deal of strength needed that 5 days ago, I didn't have to have. I have 3 children, husband, and a home to care for so weakness to not get out of bed is not allowed. The muscles slowly get stronger, and I do loose some muscle, and small PT helps. The ANESTHESTIC in my last procedure, followed MG guidelines for no paralytics, wasn't intubated, just a device to keep the airway open in my throat. ONE NEURO stated that my immune system is noticing the incision and there is a problem when it has to go into action...I also have had a immune IgA count to show an Autoimmune disease exists...because of this marker, now another piece to the puzzle.
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Unread 01-30-2013, 09:05 AM   #4
Stellatum
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How much Mestinon are you taking? This is a long shot, but when you talk about excess salivation, loss of bowels, and vomiting, I think about Mestinon overdose. I've read that a cholinergic crisis can be hard to distinguish from a myasthenic crisis.

I'm sorry you've been through such horrors, and still without a firm answer! I can hardly imagine.

Abby


Quote:
Originally Posted by karen P View Post
I am going to give your smart noggins something to think about. I have seen multiple Neuro's and 3 out of 5 have confirmed dx of MG--Seronegative with 2 positive EMG's, 1 negative (1/2013)--Today Johns Hopkins Neuro stated, he does not think I have it, but doesn't know what I have.
I started 2009 with eye twitching, loss of peripheral vision, and needed glasses to help. (astigmatism on eye dr exam) then 3 months later, I had severe neck weakness and strain to causes headaches, and a COMPLEX Migraine where speech was effected. CT was fine...then 2 months later, shortness of breath, chest pressure when exercise or steps, Cardiologist sent me to get a ct of my chest and my Thymus was enlarged to 6cm...so they removed it.
All this and EMG gave me the MG dx. After this, I stayed on Mestinon and Imuran. I went in for a knee replacement, and the day after surgery, I stopped swallowing and was intubated. I have excessive saliva production while having MG symptoms/crisis. Then 4 months later, after small exercise again, experienced facial drooping, severe body twitching, loss of bowels, vomiting, and become paralyzed for days, and get IVIG and steroids in the ICU. I can't move my muscles to get my hands legs or body off the bed for 4 days, gradually coming back. When home, very weak for 2-3 weeks, still having double vision, muscle twitching, speech problems. After another surgical procedure, the same symptoms, and was intubated due to respiratory muscles being weak, under 1 liter of volume. This time, after intubation, I had to be on a NG tube b/c not being able to swallow for 4 days afterward. There was now 5 crisis', 3 intubations--the neuro doc states "crisis' are usual, but I don't believe that she has MG."
What do you believe could be the culprit? I need to get life back...I have symptoms of shaking muscles daily...
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Unread 01-30-2013, 09:23 AM   #5
karen P
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Smile Good thinking!!

Quote:
Originally Posted by Stellatum View Post
How much Mestinon are you taking? This is a long shot, but when you talk about excess salivation, loss of bowels, and vomiting, I think about Mestinon overdose. I've read that a cholinergic crisis can be hard to distinguish from a myasthenic crisis.

I'm sorry you've been through such horrors, and still without a firm answer! I can hardly imagine.

Abby
I was on 3 of Mestinon a day, then one Neurologist increased to 5 a day. Then, I went into having severe muscle twitching where an MG doctor stated it was Mestinon sickness, and decreased the dose. Now, the very bad twitching stopped, but, with overuse of the muscles, I still have muscle weakness twitching. A definite difference. The increased salivation is where the salivary glands let go, and those are controlled usually. Right when my body is going into a crisis, I have the vomiting, loss of bowels, and then can't use my body muscles to move anymore...downhill quickly...
REALLY GOOD THOUGHTS!! THIS IS THE DIALOG NEEDED TO FIGURE THIS CASE OUT!! Thank you very much!!
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Unread 01-30-2013, 09:26 AM   #6
karen P
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Default and the Thymus gland has grown back now too~

After my Thymectomy, the gland was enlarged not a thymoma, and then I had an MG crisis with intubation, and the neuro dr's stated to have my Thymus gland rescanned, and it had started to grow back. It is still in there, growing very slowly, but back,,,,if that helps with my "case"
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Unread 01-30-2013, 09:51 AM   #7
Stellatum
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Again, this is a long shot, but I'm just checking. When you say "three a day" or "five a day," you mean spread out, right? You're not taking the pills all at once?

Once my husband was walking backwards down a sidewalk talking to me, and I assumed he knew the telephone pole was there. He didn't. Ever since then, I try not to assume stuff.

Abby


Quote:
Originally Posted by karen P View Post
I was on 3 of Mestinon a day, then one Neurologist increased to 5 a day. Then, I went into having severe muscle twitching where an MG doctor stated it was Mestinon sickness, and decreased the dose. Now, the very bad twitching stopped, but, with overuse of the muscles, I still have muscle weakness twitching. A definite difference. The increased salivation is where the salivary glands let go, and those are controlled usually. Right when my body is going into a crisis, I have the vomiting, loss of bowels, and then can't use my body muscles to move anymore...downhill quickly...
REALLY GOOD THOUGHTS!! THIS IS THE DIALOG NEEDED TO FIGURE THIS CASE OUT!! Thank you very much!!
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Unread 01-30-2013, 09:56 AM   #8
karen P
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Join Date: Jan 2013
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Default

Quote:
Originally Posted by Stellatum View Post
Again, this is a long shot, but I'm just checking. When you say "three a day" or "five a day," you mean spread out, right? You're not taking the pills all at once?

Once my husband was walking backwards down a sidewalk talking to me, and I assumed he knew the telephone pole was there. He didn't. Ever since then, I try not to assume stuff.

Abby
Abby,
I just laughed sooo hard...thank you for making me smile...one pill 3 times a day
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Stellatum (01-30-2013)
Unread 01-30-2013, 10:17 AM   #9
keepingfaith
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Default

Quote:
Originally Posted by bny806 View Post
wow, you have been through the ringer!!! So sorry to hear about all of that!!! I don't have a firm diagnosis, but take IVIG every 2-3 weeks, hopefully someone else can give you more insight... I do however have the muscle twitching/ shaking thing... I feel like I have a cell phone vibrating at times, it's really strange. Also after surgeries i have had difficulties and almost had to get intubated with my c section epidural.. couldnt' move my tongue or face or anything after it for a long time..

Have they checked for some of the periodic paralysis? (Hypokalemic/hyperkalmeic periodic paralysis)? Not sure if they can get so severe that it would result in intubation... Lambert eaton can also be affected by anesthesia.. and my last thought would be charcot marie tooth - it is an anesthesia affected disorder - but it may be that it can have a relationship with hyperthermia, not sure if it causes paralysis.. just a few thoughts..

Good luck! keep us updated!

Hey there...I get the cell phone thing too. In my stomach, back, feet, all over.
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Unread 01-30-2013, 03:08 PM   #10
alice md
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What exactly doesn't fit?

To me you sound like MuSK MG. Were you tested for that?

The response to mestinon is unpredictable in MuSK.

Some patients respond to it like AchR MG.

Others have increased weakness+fasciculations.

Others have both, but in a very hectic manner. The same dose at the same time of the day can lead to significant improvement, severe worsening or no response.
You can have fasiculations with improved muscle strength or with severe weakness.

The reason for that is (probably) that MuSK is a very complex protein. The antibodies cause: presynaptic abnormalities (less release of achetyl-choline like LEMS), post-synaptic abnormalities and also to complicate things even more- decreased activity of the acetyl-choline esterase (which is a mestinon like effect).

The balance between those effects can change, with activity and probably other factors. and thus the response to mestinon will change accordingly.
(those are my explanations).

Severe worsening with steroids may also fit. ( MuSK MG tend to have more myopathic response to steroids).

Were you ever treated with PLEX? IVIG is less effective in MuSK.

Also, did anyone suggest that you receive non-invasive respiratory support after having so many crises.
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