I am 50 year old California gal- Married to my high school sweetheart now 29 years -2 big dogs, 2 beautiful daughters, 2 handsome son-in-laws and 4 wonderful grandchildren! I believe that life is what you make it, I work very hard at staying positive and not allowing MSA to get me down; however, there are times where it gets tough and that is where my faith in the Lord, Family, Friends and PLM network of the friends I have made here come in!
My motto...MSA does not define me...it is merely an extension of who I am.
3 years ago I noticed when I walked that my legs felt tight and heavy as if something had weighted them down, almost as if I was walking through knee high mud (not that I have ever done that before! LOL)
I was severely fatigued, everything took great effort even hygiene. I had several episodes where my face would break out with odd patches around my cheeks, eyes and mouth, these patches would swell and peel like an onion skin. They were very painful. I was told once by a nurse in emergency that the rash looked almost like the rash Lupus patients get.
I noticed trouble getting up our stairs, it was getting harder and harder to lift my legs. My entire body was always in terrible pain. Often the muscle spasms brought me to tears they hurt so bad. My feet and toes can go every which way. In bed I could not roll from back to side and when I woke up in the morning my body felt as if someone had beaten me up during the night. Walking was getting to be pretty impossible and would fluctuate throughout the day.
On May 4, 2006 I ended up being taken by ambulance to the ER as I could not walk, I call these "episodes" I had tremors in both my arms and hands, and speaking took great concentration. They thought that I had a stroke; however, every test they took came back normal and showed nothing. At that time they thought it might be Myasthenia Gravis. The tremors lasted one month and then as suddenly as they came they mysteriously Poof stopped! I then blew out my left calf muscle yep it tore one afternoon as I was going out back to swim, I am allergic to bee's and a wasp came flying at me as I was headed out the door, I merely stepped back quickly on my right leg and as my foot was flat to the floor I felt a pain and heard a loud pop! It was the muscle it had torn. I assume it was due to the rigidity of my muscles. After this "episode" I experienced 2 episodes of bowel incontinence which now I haven't had an issue with since then; however I do have an issue with bladder incontinence. I also have had several small "episodes" but have not gone into the ER or doctor for as I figure they won't know how to treat them anyway.
On June 9, 2006 I had yet another severe "episode" This time I was at Stanford ER as I had a friend who had been a nurse there and she drove me there figuring they would be able to figure out what was wrong with me since no one else could. It was pretty much a repeat of the first episode. At this time the ER Neurologist diagnosis with OPCA; however, in August of 2006 a clinical professor said he could not figure out what was wrong since a Genetic Ataxia panel was completed and came back normal, the EEG and evoked potential studies were quite normal,(although a comment was made that the latency of the somatosensory responses from the legs was relatively delayed with right leg stimulation as compared to the left) and the visual and auditory evoked potentials were normal. He basically said I should chat with a phychologist or psychiatrist. I won't put here what my personal feelings about this elderly professor were at that time and still are!
I had started to create a binder with all my information from different doctors I had seen and continued going from different doctors to doctors to determine what was wrong. I had seen dermatologist, Md's, rheumatologist, allergist who specialized in fibromyalgia, until finally after 2 1/2 years I ended up at UCSF in dermatology where they tried to figure out the facial rash and could not. They tested for vascular disease and it came up negative and I was then referred to their movement disorder department to a neurologist who specialized in muscle diseases. She ruled out that anything was wrong with the muscles after she conducted an EMG and nerve conduction study and it came out fine and 3 MRI of the brain. She told my husband and I clearly something was wrong; however, she strongly felt the issue was in the brain and not the muscles. She then referred us to a MDS in the same location who specialized in movement disorders. It was there on July 9, 2007 I was given the dx of PD.
After a year of trying Requip and Mirapex which both made me very ill, a muscle relaxer Baclofen was added to help with the pain, that did not seem to really help, Sinemet was introduced and I had almost immediate relief...OK so it took about 30 to 45 minutes! I was able to lift my legs up, go up and down our inside stairs and up and down our front yard stairs without freezing. The first time I took Sinement was one of the most exciting times I have ever experienced. It was as if my life had been given back to me! Unfortunately it would be short lived and the Sinemet started to be increased often and then Comtan was added to keep it working longer.
I have constant pain but it is not often too severe, I fatigue very easily. I still have issues walking up our stairs..but I do it! Most oddly is that for the last few years my vision has been very bothersome to me and I have been in and out of the eye doctors and have also seen one specialist. My right eye vision will go blurred/doubled and I have had bifocals for a few years now. Well just last week the vision was driving me crazy again as I was seeing hazy color only out of the right eye with my glasses (I have worn glasses since 5Th grade) come to find out my vision reverted back to where it was about five to seven years ago! So they are now taking the new 6 month old glasses and changing the lenses out! Yeah I know I am weird!
On August of 2008 a specialist at The Parkinson's Institute in Sunnyvale Ca changed the dx to MSA
Since being dx with PD my mission was to try my best to educate people about PD...so many do not understand it, heck I didn't even know it could strike as young as I am!! Now with the new dx of MSA I still want to do what I can to let people know about this terrible disease and to do all I can to bring awareness to it and funding for research!
I want my life to make a difference in this world and feel through Jesus Christ, whom I put all my trust in, that he will give me the direction and strength I need...so far he has connected me with some wonderful people along this new journey, most of them right here. It is sites such as PLM that are necessary for people with MSA; they help to keep us from being isolated, which is easy to do when you have a progressive disease and the information and interaction is necessary and valuable.
Mar 14, 2008
Mar 12, 2011
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