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Old 06-21-2013, 11:09 AM #1
strizzlow20 strizzlow20 is offline
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Default Follow Up- Not Doing Well

So, I am a few weeks in to my treatment and not much luck. 20 mg of Predisone and 30 mg of Mestinon twice a day. I follow up with the neuro in a couple of weeks but I feel like crap. I think I might be going through a relapse of some kind. Not only is my vision still a problem, but my balance is off and my muscles are weak. My neck muscles are weak and I have to force my head from leaning to the right at times. This is causing neck pain. My legs tremble when I strain them, and relaxing them ease the stress. I have another MRI Monday for them to check some things out. I told the Nurse Practitioner that I didn't think my visual symptoms added up to MG so she wants me to meet with the doctor. I am going to ask for a Tensilon test at the Mayo Clinic to see if it temporary relieves the eye issues to give us some direction and to convince me its MG. I don't want to be on steroids if it's not because of the MG. I think I am past the terrified stage and I'm just at the point of coping with all of this the best I can. On top of these issues, I feel like my concentration and my short term memory is poor. Just turned 27 two days ago and I feel like I'm 60 lol.
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Old 06-21-2013, 01:20 PM #2
4-eyes 4-eyes is offline
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It's not uncommon for MG to exacerbate after a period of relative stability. Your symptoms all sound very typical of MG.

Your mestinon dosage is very low, practically non-existent. The steroid dosage may not be correct either. Finding something that works can take time and occasionally the "works" part never really happens.

Hope you find some answers with the doctor.
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pingpongman (06-21-2013), Tracy9 (06-22-2013)
Old 06-21-2013, 01:40 PM #3
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I have to agree that I think your dosage may be low on both your meds. I started pregnisone at 40 mg a day and have currently been weaned down to 25. I take 60 mg of mestinon 4 times a day and 180 mg time release at night. I find if I miss a dose, I feel very bad and it takes time to recover. That I am much better at a constant therapeutic dose. Mestinon is very short acting and it starts to wear off on me in about 3.5 hours.

My symptoms had been getting progressively worse, so I just finished a 5 day course of IVIG. I found it rather grueling but I am seeing improvement in my MG symptoms.

kathie
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Old 06-21-2013, 04:05 PM #4
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Thank you both. I'm hanging in there, Im just so freaking tired all the time. Working 8 hours at a computer is killing me, and it's not even labor so I shouldn't complain..... I've noticed with the steroids my body doesn't heal as well. I got bit by a fire ant and it got red around it and it has stayed. I'm brusing easily too. Oh well, this is life with MG I guess. I was REALLY lucky to not have severe symptoms for 4 years. On another note, my bulbar symptoms haven't really improved either with the meds. I made sure to tell my doc that too .
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Old 06-21-2013, 05:05 PM #5
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Try taking mestinon with a small snack an hour before your meal so you are strongest when you need to eat, chew and swallow. That is what I have to do. I am technically working fulltime. I work Mon & tuesday. I take 1 vacation day every wednesday and then work Thursday and Friday. This is the only way I can make it through the week. When I worked 5 days straight, my symptoms just get progressively worse until I started having breathing issues and had to go on disability for a while.

Would your boss be cooperative with a reduces work week like that?

Also, I work on a computer all day too. I had to get a larger computer screen and adjust the image resolution to high so I did not strain my eyes. Overworking one muscle can lead to weakness of an entirely different muscle. It is called the Mary Walker phenomenon.

I am so tired too. Some days I sleep 16 hours a day. You need to rest your body and let some of the work wait. If you feel good today and do too much, you pay for it tomorrow or even for a week. I had the pregnisone bruising too, it subsided after a month.

My eye symptoms are the least predictable and do not respond as well to the medication. My neuro-optomologist thought that was pretty typical of MG. I got prisms in my glasses and it really helped. You may want to try them at your next eye doctor visit.

Hang in there, I know it is frustrating
kathie
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