[Ash2014]

Hi all, first time posting. I was diagnosed just last August. I had generalized mg, seemed more ocular for the most part. After having my second child in October 2013, I was falling down, could not hold my newborn without fear of dropping him, couldn't hold my head up when changing his diaper, etc. Went to my regualer family doc who ran a bunch of blood tests and came up with nothing. Eventually the extreme fatigue lessened and it became more of double vision that worsened when I was sick or very tired. I went to see a vision training specialist who specializes in double vision, who then referred me to a surgeon. The surgeon had me scheduled for surgery and called me at home requesting me to do the blood test. Of course my numbers came back extremely high and so I was sent to a neurologist.

By now this is July 2014. He ordered a ct scan of my thymus which came back normal and an ecg which was very abnormal. He then started me on 40 mg prednisone daily for a couple of months, then tapered me off. I had also been taking generic mestinon 60mg 3/day. I experienced a complete 180 in symptoms, almost not even noticeable anymore. However, I had severe diarrhea that hit daily every time I took a pill. I tried many different things but ended up switching to timespan about a month ago. I was very hesitant to try it because of the cost, and I've only had a relief of symptoms for about a week. However, if I can continue my life without needing to stop every 10-15 minutes at a gas station to poop, it's well worth it for me. (The things we do!!) I am taking the time to write this because the past week or so I have been having some different symptoms that seem to be getting worse and I'm wondering if anyone has experienced this?

I get extremely dizzy, sweaty, short of breath and just don't feel well after eating, but this usually only lasts 30 minutes or so then goes away. I also have been feeling waves of dizziness that almost feel like I'm being shocked. This lasts for just a second or two then I'm normal again. It has been happening much more frequently though, especially towards the end of the day. If I am walking or standing when this happens I have lost my balance and had to shut my eyes and hold on to something, though shitting my eyes doesn't seem to help the sensation, it just seems to make me feel better lol. At its worst its happening every 30 seconds or so.

Could this be related to the timespan? Mg? Anyone have any tips?? I have a 3 year old and 1 year old and I am a retail manager full time. I need to be active all day, as much as my mg will allow. So far I have been very blessed with my symptoms but I do have times when I definitely feel like I can't keep up with my kids. I am also a single momma so I can't allow this to keep me down for long! If you've read this far thank you so so much. even just some advice will be very much appreciated!! Thank you.

-Ashley, 26

[rockenmama]

Originally Posted by Ash2014

Hi all, first time posting. I was diagnosed just last August. I had generalized mg, seemed more ocular for the most part. After having my second child in October 2013, I was falling down, could not hold my newborn without fear of dropping him, couldn't hold my head up when changing his diaper, etc. Went to my regualer family doc who ran a bunch of blood tests and came up with nothing. Eventually the extreme fatigue lessened and it became more of double vision that worsened when I was sick or very tired. I went to see a vision training specialist who specializes in double vision, who then referred me to a surgeon. The surgeon had me scheduled for surgery and called me at home requesting me to do the blood test. Of course my numbers came back extremely high and so I was sent to a neurologist.

By now this is July 2014. He ordered a ct scan of my thymus which came back normal and an ecg which was very abnormal. He then started me on 40 mg prednisone daily for a couple of months, then tapered me off. I had also been taking generic mestinon 60mg 3/day. I experienced a complete 180 in symptoms, almost not even noticeable anymore. However, I had severe diarrhea that hit daily every time I took a pill. I tried many different things but ended up switching to timespan about a month ago. I was very hesitant to try it because of the cost, and I've only had a relief of symptoms for about a week. However, if I can continue my life without needing to stop every 10-15 minutes at a gas station to poop, it's well worth it for me. (The things we do!!) I am taking the time to write this because the past week or so I have been having some different symptoms that seem to be getting worse and I'm wondering if anyone has experienced this?

I get extremely dizzy, sweaty, short of breath and just don't feel well after eating, but this usually only lasts 30 minutes or so then goes away. I also have been feeling waves of dizziness that almost feel like I'm being shocked. This lasts for just a second or two then I'm normal again. It has been happening much more frequently though, especially towards the end of the day. If I am walking or standing when this happens I have lost my balance and had to shut my eyes and hold on to something, though shitting my eyes doesn't seem to help the sensation, it just seems to make me feel better lol. At its worst its happening every 30 seconds or so.

Could this be related to the timespan? Mg? Anyone have any tips?? I have a 3 year old and 1 year old and I am a retail manager full time. I need to be active all day, as much as my mg will allow. So far I have been very blessed with my symptoms but I do have times when I definitely feel like I can't keep up with my kids. I am also a single momma so I can't allow this to keep me down for long! If you've read this far thank you so so much. even just some advice will be very much appreciated!! Thank you.

-Ashley, 26

YES it could be due to the timespan Mestion. I'd call your Neuro and let him/her know !

[Ash2014]

Yes my neuro is aware. He actually said it is likely related to my period. Weird right?! But what do you know the last couple of days have been much better. This morning was pretty rough, though. Almost had to pull over and call for a ride because of weakness. My eyes wouldn't stay open and my leg was shaking trying to push on the gas. I still feel like I am getting used to the timespan and every day is different. Just a whole lot to be dealing with on top of life.


Sent from my iPhone using Tapatalk

[rockenmama]

Originally Posted by Ash2014

Yes my neuro is aware. He actually said it is likely related to my period. Weird right?! But what do you know the last couple of days have been much better. This morning was pretty rough, though. Almost had to pull over and call for a ride because of weakness. My eyes wouldn't stay open and my leg was shaking trying to push on the gas. I still feel like I am getting used to the timespan and every day is different. Just a whole lot to be dealing with on top of life.


Sent from my iPhone using Tapatalk

Not weird at all, at least to me. I have the same problem and it starts a few days before that time of the month. I'm not doing that hot right now and I have a feeling my period will be starting within a few days. One of the perks of being a woman