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Dana’s Story

Site created on February 24, 2019

My diagnosis is not a matter of assigning a disease name to it. It has been messier than that. In fact, it is a string of symptoms. It has developed from inflammation. I have multiple rheumatological problems that have been difficult to control for over 40 years. That means that I have inflammation throughout my joints from an autoimmune arthritis that has not been controlled by any of the drugs I have tried, which is all of them labeled for my arthritis. The inflammation has spread to my tendons, spine and ribs and on and on.

Your body can’t do 40 years of that and not start to affect the neuromuscular system. In fact, it has given me a neuromuscular disorder described only by symptoms. I have a muscular condition called myotonia. It is the largest and scariest of the disorder. Myotonia means that my muscles are getting weak from the damage they have developed. When the damage causes weakened hand strength, it is annoying. When it is leg muscles, it is a larger problem. If it starts on my muscles of breathing, it is scary, which is an understatement. I am using a walker now because my leg muscles are damaged and showing impaired function because of the inflammation. . I’m hoping to treat it successfully before It gets worse than using a walker for support. It can get much worse.

Other neuromuscular problems make my movements even more difficult. Ataxia means my movements toward whatever goal do an “S” type movement as they move. Muscle fasciculations mean that my muscles spasm and jerk even when I am completely relaxed. Even in my spine, the nerves and surrounding discs have been damaged by the constant inflammation. They make walking even more difficult and painful.

Those are the biggest hurdles I have at the moment. We are attacking the symptoms by trying to treat the inflammation in much stronger ways than the immunosuppressants and biologic anti rheumatic that I have been on for 20 years.

Newest Update

Journal entry by Dana Jetton — Apr 11, 2019

My neurologist finally put my request for my steroid infusion onto the system so that I could schedule it! Yea! Up until now I have been concentrating on how much healing this will do. I have been saying prayers of thanks about this treatment. I have been trying not to even think about the terms that define it. Now that I just today made the appointment for three days in a row to have 1000mg of steroids pumped into me each day, I’m over-thinking it a bit. 😬😳

Also, I had to ask Alan to move a trip to see his parents ON HIS BIRTHDAY because I don’t know how my body will react to the infusion. If they are anything like Remicaid infusions,I won’t be able to make a sandwhich for lunch. It will lower my immune system considerably more than Remicaid did. ...So Alan very quietly agreed immediately to change the weekend he goes up there (to Temple) without even a huff. Yeah, I know. I married a good one.

Read More of the journal titled "April 11, 2019"

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