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-   -   Alarming symptom (https://www.neurotalk.org/myasthenia-gravis/200807-alarming-symptom.html)

cait24 03-06-2014 04:42 PM

I completed a 3 day dose of IVIG last week and also received my BIPAP. It took about a week to get used to the BIPAP and to sleep through the night. Between the BIPAP and the IVIG my breathing is much better and no more crackling. However, it is only a week and a half since IVIG and my leg weakness is worse than ever. I had to leave work early today, I was afraid my legs would give out. I really think I need a mobility device. Any suggestions on what to use? I am beyond a cane. I am afraid a walker would tire my arms and cause breathing issue. I do not think I am emotional prepared to yield for a wheelchair or scooter. Any suggestions?

I just feel like I am on a slow progressive decline, at least my breathing is better. If you had a similar experience let me know if anything helped to get back to normalcy.
Thanks again
kathie

limpy 03-08-2014 09:23 PM

Last time I was in the hospital and unable to walk unassisted, they brought me a rollator. The one I have has the four large wheels, locking hand brakes and a seat to sit in when I get tired. It has saved me many times. I have graduated to a cane now, but I got one that folds up, so I can put it in my pocketbook if I need to.
When I do use the rollator, I kind of lean forward and it takes a lot of the strain off my legs and not too much in my arms. I mostly use it now to haul things around the house.

cait24 03-08-2014 09:46 PM

Thanks, I am going to ask the neuro for a script for a rollator, I see her in 2 weeks. I upped my mestinon to 120 x 4 and 180 at night. That and 2 days in the recliner and my legs are feeling stronger. I hope this is just a flare. Everytime my legs get so weak without a cause, I am afraid that it is permanent.

They only did 3 days of IVIG, instead of 5 this time. I am new to IVIG and it is only my third time. What is typical for a maintenance schedule? I think I waited too long for IVIG this time.

thanks
kathie

limpy 03-10-2014 11:38 PM

Quote:

Originally Posted by cait24 (Post 1055763)
Thanks, I am going to ask the neuro for a script for a rollator, I see her in 2 weeks. I upped my mestinon to 120 x 4 and 180 at night. That and 2 days in the recliner and my legs are feeling stronger. I hope this is just a flare. Everytime my legs get so weak without a cause, I am afraid that it is permanent.

They only did 3 days of IVIG, instead of 5 this time. I am new to IVIG and it is only my third time. What is typical for a maintenance schedule? I think I waited too long for IVIG this time.

thanks
kathie

I don't know the answer to that because I have never gotten past the initial loading dose. But most people get a single maintenance dose and the timing depends on how they are doing. Each person's treatment is totally individual, so you kinda have to see what works. From what I have read, you just have to kind of play it by ear until you figure out what works for you.
If you think you waited too long this time, then you would probably need to shorten the interval next time.


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