melb
New member
- Joined
- Jan 6, 2012
- Messages
- 3
- Reason
- Learn about ALS
- Country
- AUS
- State
- queensland
- City
- gold coast
i am a 31 year female who is supposed to be enjoying her young family but 7 months ago after the birth of my son i noticed pain in my left forearm which was shooting up to my fingers and within a couple of weeks i could not extend my fingers properly and had wrist drop. i went to my GP and she thought i had damaged my ulner nerve and sent me to neurologist for a nerve conduction study. Long story short the conduction study came back normal and i was sent for an xray and ultrsound on the arm and ulner nerve all came back normal. This was the point alarm bells started ringing and i was sent for MRI on my brain, spinal cord, and left arm, once again all came back normal. The neurologist said to leave it a couple of months to see if the would improve on its own. I thought nothing of it and planned to see him in couple of months. During this time i noticed that i was becoming fatigued, and my muscles would ache just doing normal day to day things. My left hand and forearm got worse with strength and muscle tone. On my next visit to the neurologist he took one look at me and began another clinical exam from head to toe it was at that point he informed me that my left leg was weaker then the right and i had hyperflexia in the legs and twitching in the upper left arm. He sent me for anothe batch of MRI scan to eliminate MS and to check if he had missed anything all came back normal once again. At this point i was sent to another neurologist who specialises in motor neurone disease. he conducted an EMG test and found weakness in the left arm but without a conduction block and said the right side was not 100%, i had also had all the bloods taken and come back normal. neurologist said that he had to do some work on my results and would send them to my refering neurologist. To cut an even loger story short on my return to the neurologist he gave me the news that i motor neurone disease instead of multifocal motor neuropathy because i had no conduction block and my bloods were negative. Since then i have been getting twitching all over my body not all the time and my muscles fatigue and ache if hold the baby or doing alot on my feet, i just want to sleep all the time and my balance seems to be getting worse. This is where it gets confusing for me the MND neurologist contacted me and suggested starting a course of IVIG just in case it might be MMN i have undergone a treatment everyday for week (this was 2 weeks before christmas) i have not noticed any difference or any worse progression and have been told it may take 6months of treatment before i notice a difference and so i ahve therefore agreeded to 1 treatment every month. Is it normal for MMN to have no conduction block and negative bloods for the GM1 antibodies and everything else they could possibly test?. Feel like my life is in limbo. has any one experienced this or could offer some input on their personal experience then i would love to hear from you.
thanks
mel
thanks
mel