Body Betrayed | Body Disabled

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Saturday, January 3, 2015

Back to Vanderbilt

I hope everyone had a happy new year!

I will be going back into Vanderbilt on Monday (1/5) for 5 more day of plasma exchange. The MG antibodies have built back strongly in my system and have been causing lots of problems lately. I have not posted a lot recently, but the symptoms have been getting much worse since mid November.

Here is a copy of the report I sent to my neuroligist.

Dr. C.L.: Here is my pre-hospitalization update as of December 30, 2014 Current Status: I have had several good weeks since the crisis in August, although it did take some time to get over the crisis. When the MG antibodies reached that tipping point in my body, I began to go down hill rather quickly.

Breathing: My breathing was better during my good days and I could count to 38 on a breathing count test. Now it is going down quickly but I can do 26 when I am rested on a breathing count test, which is not too bad for me.

Mental Issues: There is definitely a coloration between the antibody levels and my mental status. The worse my MG, the worse my mental condition. Right now, it is not good at all. I am mixing up my words when I talk and having trouble with problem solving issues. This is very noticeable to Cathy.

Vision: Worsening again as is my usual pattern. Moving objects blur easily. I am still having ocular migraines and my eyes hurt. A new issue happened for the first time this past Sunday (12/28). My vision doubled while looking straight ahead at conversation distance. It was normal when looking far away, but up close was doubling after a few seconds. This was better by Monday.

Muscle Jerking: I have lots of muscle and leg jerking. Lots of fasciculations. No change.

Tingling: I tingle and feel number over most of my body. My legs and arms are effected the most. My left arm is more numb than my right. No change.

Tremors: I still have tremors in my hands. No change.

Aching: I ache most of the time. No change.

Needle Pricks: I do not feel needle pricks over most of my body. I can feel scratches at times. But, I also find I have injured myself and not realized it. No change.

Sensory Issues: I have slightly delayed response to hot and cold. Strong sunlight instantly hurts my skin. Bright light hurts my eyes. No change.

Exhaustion: Was some better, now worsening again as is my usual pattern. Very, very tired at present. Weakness: Was some better, now worsening again as is my usual pattern.

Walking and Balance: Was some better, now worsening again as is my usual pattern.

Hypohidrosis: Still present. No change.

Body Temperature Regulation: I am still having issues regulating my body temperature. My body is starting to feel colder than normal.

Orthostatic Hypotension: Occasional but manageable. No change.

Tenth Cranial Nerve Palsy (CN10): No change.

Voice: Doing OK, no real issues at present.

Swallowing: I still have strangling issues, especially when brushing my teeth. I am not aspirating. Water and saliva will occasionally cause me to strangle as well. I think this is a combination of the loss of sensation caused by the CN10 issue and occasional MG throat weakness.

Headaches: My headaches have been much better since the series of occipital nerve blocks by Dr. C.C.. He also has me on Lipitor now because of a pre-2005 lucanar stroke.

Jaw/Temple Pain: Better at present. No change.

Whole Body Involvement: Still present. No change. Swelling: I still have swelling in both legs. No change.

Nausea: Only a slight problem in the morning when taking all the meds.

Gastroparesis: A little worse lately.

Hypogonadism/Gynecomastia: Still present in right breast. No change. Dr. Utz is following me for this and the prednisone induced diabetes. My A1C is 6.0.

Bi-PAP: Still working well. Dr, R,U. is following me for this issue.

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