[crimsonxstarlet]

Hi everyone. My name is Tahia but most people call me Ty. I joined this site recently and in reading your posts I feel like I am not alone in my experiences. That has been a blessing! So thank you.

To give a little background I am 31 and in January (2014) I began having double vision that would not go away and got worse as the day progressed. I was out of work for a month while trying to figure out what was going on. Scans and tests and more scans and tests later determined nothing. So my eye doctor gave me prisms in my glasses and I went on my way. Over the next few months I missed several days of work (almost a day a week sometimes more- I only work 3 days a week) due to double vision and what I attributed to stress/exhaustion/illness (difficulty moving, trouble controlling my extremities, difficulty swallowing and trouble breathing). By April the double vision was back with a vengeance and wouldn’t go away even with my glasses. Again I was out of work for several weeks. So my family doctor sent me for more scans and tests which showed nothing and then to an Ophthalmologist. The Ophthalmologist sent me off for bloodwork and increased the prism in my glasses to help with the double vision. A week later I get a call from the Ophthalmologist informing me I have Myasthenia Gravis and to make an appointment with my primary doctor to discuss treatment as soon as possible and should I have difficulty breathing to go to the ER. I got in to see my primary doctor that day (I was terrified, I had no idea what was going on). She sent me to see a Neurologist who of course could not get me in until the end of June. So I continued to miss several days of work as my symptoms worsened. I was not aware that I was not helping my condition being the busy, take on everything I am asked to and then some person I have always been and routinely wore myself into the ground. I would have days that I could not hold myself up, drop things, spill drinks (I now drink everything in a plastic glass with a lid) and so on and so on. This affected my every move and I still only had a little information and not a clue to the extent of what was happening. I met with the Neurologist at the end of June and he told me to take it easy. I appeared to have control of my symptoms and check back with him in July. *sigh* I continued to miss work and often had to be carried to the bathroom because I was unable to stand or walk all the way to the bathroom alone. I saw the Neurologist again in July where he told me that before he gave me any medication to schedule a date next week for a tensilon test. He stated the tensilon test would tell him if I would respond well to Mestinon. I had the tensilon test and I felt strong and my double vision improved (but didn’t go away) for about a minute. The Neurologist said I didn’t respond as well as he had hoped and he prescribed Mestinon 60mg twice a day. The Mestion helped some but I still struggled a lot. August 29 I went into work having some chest pressure, which I thought could be asthmatic, followed by trouble swallowing. I was concerned when it did not go away so I called the Neurologist who said if I feel that it is bad go to the ER. So I did. I went the University of Michigan hospital where I waited in the ER for 5 hours. By the time I was called back I could not move my legs, arms, neck and could barely speak. A Neurologist was there as I was taken to an exam room. That night I was put on a ventilator. I was given IVIG and started on prednisone 60mg, cellcept 2000mg, and Mestinon 60mg 4x a day. Two days later I was taken off the ventilator and went home three days later with a new medication regimen and a new Neurologist. Since then I have not been able to work. I am lucky if I am able to go to the grocery store AND make dinner in the same day. I now get IVIG treatments at home bi-weekly. My chest still gets heavy every afternoon (Mestinon helps some) and I still have times where I cant walk. Most of the time I feel like I am walking through quicksand and everything I pick up is like lifting weights while exhausted. I walk with a cane whenever possible to prevent falls. I began having hip pain after walking for a few minutes so now the Neurologist is concerned I may be developing Aseptic Necrosis due to the Prednisone (and gained 35lbs). We have also discussed a Thymectomy (CT came back with no tumor but there is residual tissue) when I am stable and strong enough.

I have a truly wonderful husband who has been amazing every step of the way but I get concerned about the amount of stress he has taken on since this has taken over our lives. I know this is a long post (sorry) but I have a few questions for anyone willing to answer. At this point my primary doctor wants me to file for disability. This seems like an absurdly complicated task. I have read about so many people who are denied and then appeals can take forever. Has anyone tackled Social Security and have any tips that will make this easier? Do I get a lawyer or file on my own? Another question I have is…. Is there a point where this actually gets easier/better? I feel like I am on a never ending uphill battle. I have learned to slow down to the speed of a turtle and it helps but I kind of feel like this has taken all my plans for the future and flushed them down the toilet (I was about to start in a nursing program, I work with people with mental illness as a peer- someone that can relate, I have bipolar). *sigh* I guess I am looking for some thoughts on how to manage this as it has turned my life upside down. If you read all this.. Thank you!