monmike
New member
- Joined
- Nov 19, 2010
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- TN
- City
- Bluff City
I have been looking at these Boards for over a year and finally decided to post. It all started in October 2009 at Disney World, my husband woke up and couldn't move his left arm...we came home and the testing started, EMG, MRI, Spinal Tap..the local neurologist didn't know what was wrong and his right leg starting having problems. We went to Vanderbilt in December 2009 and received the probable diagnosis of ALS (told to go home enjoy the holiday and come back in January - dont' read about it on the internet). Returned to Vanderbilt in January - don't think it is ALS because he regained some strenght....they weren't sure what was wrong and sent us home. The doctor called in Febuary and said lets try IVIG - this went great, Mike regained strength and was moving around OK. The next trip to Vanderbilt....the doctors said CIDP, another round of IVIG 9 weeks latter - this IVIG didn't go as well and at this point Mike is in a lot of pain - doctors now think MMN. The next IVIG only lasted 5 weeks, so from June - October Mike had IVIG every 6 weeks this would improve his strengh some however he is always in a lot of pain. Prior to having the treatment Mike is unable to dress himself or walk without a cane. We decided in October to give the Mayo Clinic a call - due to his condition they had an appointment in November, however since he had just had a IVIG we wanted to wait until they could see him at his lowest. So he is scheduled at the Mayo in Rochester on December 13th and this will put him 7 weeks post IVIG.
Does anyone else have the severe pain associated with their MMN? Also, Mike is normally in bed for 2 days after the IVIG treatment.
The last year has been a roller coaster ride for our family.
Does anyone else have the severe pain associated with their MMN? Also, Mike is normally in bed for 2 days after the IVIG treatment.
The last year has been a roller coaster ride for our family.