I will have one regular Cytoxan infusion every four weeks for the next six months. The goal of treatment is to lower my immune system even more without totally destroying it. I am not having high-dose Cytoxan (a.k.a. HiCy) which ablates one's immune system. Be sure to read the September 1, 2011 blog post for the reason I am taking Cytoxan.
None of my previous treatments has
stopped the progression of my Myasthenia Gravis and Small Fiber
Neuropathy. Cathy and I hope this will.
My current symptoms are slowly worsening, with special attention
to the following issues.
- (1) Breathing continues to be a major problem. I am now on a Bi-Pap at night. My lung VC has dropped over 30% since March. This is debilitating.
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- (2) Swallowing liquids is becoming difficult at times.
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- (3) I have lots of involuntary movement in my arms and legs. They jerk own their own at times. I have a lot more leg cramps than ever. My sleep doctor diagnosed Periodic Limb Movement Disorder.
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- (4) I have had sharp, burning, electrical pain in the outside of my thighs. Right leg more than left. Pain is excruciating.
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- (5) I am occasionally having trouble choosing the right words to say or selecting the correct word for objects. I also am not "sharp" in my thinking right now. I hope this is from all the medication to combat the headaches.
- (6) Vision disturbance and eye pain are a constant issue.
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- This next section is very long. I have included it for documentation since my insurance companies and some medical professionals follow this blog. It compares my symptoms from January 23, 2010 through September 9, 2011.
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Whole Body Involvement -
- January 23, 2010: I feel my entire body is being effected to varying degrees by whatever this condition is.
- March 21, 2010: This has not changed.
- April 04, 2010: Part of my nervous system is improving, parts are staying the same, and nothing is getting worse.
- July 24, 2010: Some symptoms seem to be worsening.
- October 01, 2010: This has not improved.
- December 01, 2010: My whole body is still effected.
- January 17, 2011: This has not changed at all. From my perspective, I am still slowly worsening.
- March 28, 2011: Same.
- September 9, 2011: This is progressively worsening.
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- Needle Pricks
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- January 23, 2010: I do not feel needle pricks over almost my entire body. I can feel pressure and touch, but not sharpness.
- March 21, 2010: This has not changed.
- April 04, 2010: I can feel a few more needle pricks, enough that I just do not stick my body any longer as I once did. I feel needle pricks over about 10% of my body now.
- July 24, 2010: I am losing the ability to feel needle pricks again over my entire body.
- October 01, 2010: This has not improved. I only feel needle pricks on about 15% of my body.
- December 01, 2010: I slightly feel needle pricks on less than 10% of my body.
- January 17, 2011: This has not changed. I slightly feel needle pricks on less than 10% of my body.
- March 20, 2011: Same.
- September 9, 2011: No pain, but no gain either! I do not the the burn of "lidocaine" when injected anymore.
- January 23, 2010: I tingle all over; legs and arms more than the rest of my body. The intensity of the tingling can vary.
- March 21, 2010: I still tingle all over but to a lesser extent. My arms do not tingle nearly as much as they did.
- April 04, 2010: This has not changed since March.
- July 24, 2010: I am tingling more and more. Over the last few weeks, this is much worse during the night and often wakes me up from sleep.
- October 01, 2010: This may have worsened. I still tingle and the are a few areas that feel very numb. On occasion, it seems as if I do not feel my body at all. It's like I am detached from my body.
- December 01, 2010: This continues to worsen slightly. I still tingle and there are a few increasing areas that feel numb. On occasion, it seems as if I do not feel my body at all. It's like I am detached from my body.
- January 17, 2011: More tingling and numbness over almost my entire body. Major pain area is in my knees to feet on both legs and forearms to hands on both arms.
- March 20, 2011: Same.
- September 9, 2011: Same.
- January 23, 2010: I feel shaky and trembly from the inside-out almost all the time, but it does not feel like hypoglycemia. Another person on a neuropathy website described the feeling like 'vibrating all over'.
- March 21, 2010: I still feel trembly, but not as intense.
- April 04, 2010: This has not changed at all since March. I may have to live with the tremors.
- July 24, 2010: The tremors and shakiness have increased a little.
- October 01, 2010: This has not improved. I have developed an occasion jerk in my left arm and both legs on occasion.
- December 01, 2010: I still have slight tremors and occasional jerks in my arms and legs. I feel trembly all of the time.
- January 17, 2011: My tremors seem to be increasing in my left arm and legs. The tremors are more pronounced with activity.
- March 20, 2011: Continuing to increase.
- September 9, 2011: Continuing to increase.
- January 23, 2010: I have trouble climbing stairs and getting out of chairs. It feels like I have a lack of strength in my knees and legs. I become short of breath easily with almost any activity. It is then difficult for me to catch my breath.
- March 21, 2010: I can climb stairs better, but I am still having trouble catching my breath.
- April 04, 2010: This is improving slightly. I still have trouble catching my breath at times.
- July 24, 2010: This has worsened since April. I was tested for Primary Pulmonary Hypertension. The heart catheterization was negative for PPH. Breathing and variable heart rate are major problems for me now.
- October 01, 2010: This is definitely worse.
- December 01, 2010: I am very short of breath. I become short of breath easily with almost any activity. It is then difficult for me to catch my breath.
- January 17, 2011: Shortness of breath is still a major problem for me. It severely limits my walking and daily activities.
- March 20, 2011: Much worse.
- September 9, 2011: Much worse. Very disabling.
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- Exhaustion
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- January 23, 2010: I feel tired and exhausted all of the time. I never get rested, stop tingling, or aching.
- March 21, 2010: This has not changed too much. I am a little more rested.
- April 04, 2010: I feel stronger and more rested. I think this is improving with time.
- July 24, 2010: This has worsened some. The breathing problems have caused me to feel not as rested as in April. I become exhausted with very little exertion and my heart rate usually elevates quickly.
- October 01, 2010: This is definitely worse.
- December 01, 2010: The exhaustion improved after the PLEX in October, but the effects are wearing off and I become exhausted easily now.
- January 17, 2011: The exhaustion has returned after the PLEX. Even the IVIG in December did not help the exhaustion. Combined with the breathing problems and weakness I am very limited in what I can do.
- March 20, 2011: Same.
- September 9, 2011: Worse.
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- Weakness
- January 23, 2010: I feel extremely weak and cannot do what I once did. When I try to do some physical activity for a length of time, my body just seems to stop trying.
- March 21, 2010: My physical strength is slowly improving. I am still a long way from recovering my full strength, but I can tell some improvement.
- April 04, 2010: My strength is continuing to recover. I can tell my muscles are way-out-of-shape and will take some time to rebuild. I still am not pushing myself too much at this point in time, but I am progressively increasing my activity level.
- July 24, 2010: My strength has reached a plateau and fades quickly with use.
- October 01, 2010: This is definitely worse.
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- December 01, 2010: My strength improved after the PLEX, but is declining again.
- January 17, 2011: I weaken easily again. The Mestinon only lasts for about 3 1/2 hours.
- March 20, 2011: Same.
- September 9, 2011: Same.
Walking and Balance
- January 23, 2010: I have trouble walking and keeping my balance. I really have to concentrate on walking to make my legs move. Walking any distance (a few blocks) is a real problem.
- March 21, 2010: My walking and balance is better. I can walk a little faster and a little further. My balance seems better, too.
- April 04, 2010: My balance and walking continue to improve. I can walk faster and further than just a few weeks ago. I actually worked in my yard a little on Friday of this week.
- July 24, 2010: I cannot walk as far, but may be due to my shortness of breath.
- October 01, 2010: This is similar to July. I use a walking stick if I have to walk any distance. I now have a disabled parking permit.
- December 01, 2010: My walking gate is not as smooth. I feel like I limp. I still use a walking stick for any long distance. Walking any distance, such as hospital visitations, is a real problem for me.
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- January 17, 2011: Walking has not improved. I have fallen three times since early December 2010 because my legs were asleep. Because my I feel numb and tingle, I cannot always tell when my legs are asleep.
- March 20, 2011: Same.
- September 9, 2011: Same.
- January 23, 2010: My legs ache from my upper-thighs down. My arms ache from my elbows down.
- March 21, 2010: My legs still ache very much. My arms are not aching at present.
- April 04, 2010: This has not changed since March.
- July 24, 2010: My arms and legs are aching. My ankles and feet have more burning pain and numbness.
- October 01, 2010: This has not improved.
- December 01, 2010: I ache more now than before the PLEX in October. Both arms and legs. I also have more burning pain now than before and the burning area is increasing in size.
- January 17, 2011: My total pain level is increasing, both burning and aching.
- March 20, 2011: Same.
- September 9, 2011: I hurt much more now.
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- Autonomic Nerves
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- January 23, 2010: The condition is now definitely evolving to include my autonomic nerves. The autonomic nerves control all bodily functions including breathing, heart rate, kidney function, sweating, etc.
- March 21, 2010: This has not changed.
- April 04, 2010: This has not changed.
- July 24, 2010: This has worsened.
- October 01, 2010: This has not improved.
- December 01, 2010: This has not changed.
- January 17, 2011: This has not changed.
- March 20, 2011: Same.
- September 9, 2011: Same.
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- Hypohidrosis
- January 23, 2010: I have greatly reduced sweating. I basically only sweat on my forehead on rare occasions. If I have on a lot of clothing and if I am very hot, I may sweat under my arms a little. I normally have sweated heavily for most of my life.
- March 21, 2010: This has not changed.
- April 04, 2010: On Sunday, March 28, 2010, I actually sweated while preaching. Wow! Great! This is a major improvement. It may have been a combination of activity and the hot stage lights, but I really sweated on my forehead. I may have develop some very light sweating under my arms, but it is difficult to tell for sure. As mentioned in an earlier post, I feel like I might be sweating at times, but moisture is not present.
- July 24, 2010: This is the same as April.
- October 01, 2010: This has not improved. I do sweat a little more on my forehead because of all the medication.
- December 01, 2010: I basically still do not sweat. The exception is an occasional "hot flash" about 30 minutes after taking the CellCept. I will sweat for a few minutes then.
- January 17, 2011: This has not changed.
- March 20, 2011: Basically the same, but I feel "clammy" at night. Some additional sweating on forehead with exertion.
- September 9, 2011: Same.
- January 23, 2010: I am almost constantly cold. In the past, I was never cold. But my body seemed to change a few years back. I am colder this year more than ever.
- March 21, 2010: This has not changed.
- April 04, 2010: I still feel cold most of the time. Strangely enough, the hotter weather is really beginning to bother me. I guess this is connected with the hypohidrosis (reduced sweating). I must be careful not to overheat. This is still part of my autonomic nervous system that seems to be most affected now.
- July 24, 2010: This is the same as April.
- October 01, 2010: This has not changed.
- December 01, 2010: I can still overheat if I am not careful. Strangely enough, I still feel cold but the cold does not really bother me. I do not think my body is registering the cold temperatures properly.
- January 17, 2011: This has not changed.
- March 20, 2011: Same.
- September 9, 2011: Same.
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- Appetite and Weight
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- January 23, 2010: I feel constantly full and am almost never hungry. I could go literally a day without eating. My current weight is 257 lbs, down from 282 lbs without trying to lose weight.
- March 21, 2010: I still feel full and have no appetite. I force myself to eat and have been able to keep my weight around 260 pounds. I did have a lot of fluid retention from the plasmapheresis.
- April 04, 2010: This has not changed since March.
- July 24, 2010: I have had steroids a couple of times since April for various reasons. They always make me hungry and I eat. I also think my body is retaining fluids. My weight is about 270 currently.
- December 1: 2010: Weight gain is a problem. Still feel full,but not really hungry. Diet has not changed from what it was earlier this year.
- January 17, 2011: My weight is still increasing due to medication.
- March 20, 2011: Weight stabilized around 315.
- September 9, 2011: Don't want to talk about it!
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- Photo-sensitivity
- January 23, 2010: Sunlight, or bright spot-lights, make my face feel like it has been sunburned or like ants are biting me. I avoid sunlight.
- March 21, 2010: This has not changed.
- April 04, 2010: This is still a real problem for me. The last few days have been warmer and sunny and I have tried to spend more time outside. Sunlight hurts my skin. I feel like I have an instant sunburn. I have a dark-complexion and sunlight has never bothered me before. Even when I would sunburn, It would quickly turn into a tan. Not anymore! I have not tried sunblock—I don't like the idea of chemicals on my skin. So for now, I cover up when I go outside. Strong spot or flood lights have the same effect. It is almost a heat/infrared sensitivity.
- July 24, 2010: This has not changed since April. I did go out in the sun long enough to get a sunburn. Strangely enough, the sunburn itself did not hurt.
- October 01, 2010: This has not changed.
- December 01, 2010: I still feel pain from sunlight.
- January 17, 2011: This has not changed and I avoid sunlight.
- March 20, 2011: Same.
- September 9, 2011: Same.
- January 23, 2010: My orthostatic hypotension readings at 9:30 AM, two hours after eating were as follows:
- Lying down: 146/81 pulse: 59
- Standing one minute: 133/83 pulse: 102
- Standing three minutes: 126/83 pulse: 86
- Standing five minutes: 132/86 pulse: 84
- Standing ten minutes: 130/88 pulse: 102
- Lying down: 157/74 pulse: 67
- Standing one minute: 126/69 pulse: 103
- Lying down: 157/76 pulse: 83
- Standing one minute: 141/83 pulse: 107
- Standing three minutes: 139/89 pulse: 108
- Standing five minutes: 146/90 pulse: 109
- Standing ten minutes: 148/93 pulse: 120
- Standing twenty minutes: 134/95 pulse: 126
- Lying down: 150/77 pulse: 70
- Standing one minute: 111/71 pulse: 130
- Standing three minutes: 138/89 pulse: 114
- Standing five minutes: 141/89 pulse: 115
- Standing ten minutes: 141/93 pulse: 106
- Standing twenty minutes: 134/87 pulse: 131
- Sitting down five minutes later: 148/85 pulse: 82
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- I still have indications of orthostatic hypotension with a large drop in BP, and increase in pulse rate at one minute this morning. My overall resting pulse rate is dropping back to normal rates for me.
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- July 24, 2010: My heart rate and blood pressure have been erratic for several weeks. There is a connection to my breathing problems. Orthostatic hypotension is still present. I did the full twenty minute orthostatic hypotension test Tuesday, June 30. My readings were:
- Lying down: 149/86 pulse: 75
- Standing one minute: 107/81 pulse: 127
- Standing three minutes: 128/90 pulse: 113
- Standing five minutes: 138/88 pulse: 115
- Standing ten minutes: 142/92 pulse: 115
- Standing twenty minutes: 125/97 pulse: 127
- Sitting down twenty minutes later: 139/88 pulse 83
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- December 01, 2010: I have had a few instances of OH since the PLEX. Nothing unusual or recorded. My blood pressure has tended upward.
March 30, 2011: Blood pressure became a
major issue. It went as high as 200+/100+ in February. I started on
Lisinopril and my pressure is under control. Too much medication and
I have orthostatic issues again. Currently BP runs 145/85.
- Vision
- January 23, 2010: My vision changed somewhat in July 2009. My peripheral vision field is much less than normal for me.
- March 21, 2010: I have noticed some improvement in my vision. My peripheral field is increasing some. It is still not back to normal, but is decidedly better.
- April 04, 2010: My peripheral vision is almost back to normal. I have more than a 180 degree field of vision now. This is more normal for me.
- July 24, 2010: My vision blurs from time to time.
- October 01, 2010: This is worsened. My eyes will physically hurt and my vision will blur.
- December 01, 2010: This is a major problem for me right now. Eye pain, blurred and double vision on occasion. I do not drive at night because of my vision.
- January 17, 2011: My ophthalmologist visit did not reveal any "eye" problems. The double vision and blurred vision are consistent with Myasthenia Gravis. I still have a lot of pain and aching when I move my eyes. My eyes hurt all the time.
- March 20, 2011: Same.
- September 9, 2011: Vision is worsening. If I look straight ahead, vision is basically OK. If I shift my eyes, I have double vision. Moving object blur easily. I do not drive much at all now.
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Tenth Cranial Nerve Palsy - January 23, 2010: I was diagnosed around 2005 with a partial CN10 palsy that effects my throat and gag reflex somewhat. I do not feel hot or cold on the interior left of my throat when I swallow. I have not had any trouble swallowing, but I do not feel the temperatures.
- March 21, 2010: This has not changed.
- April 04, 2010: This has not changed.
- July 24, 2010: This has not changed.
- October 01, 2010: This has not changed. I did eat a slice of jalapeno pepper (rare for me) the other day. I could feel the burn on the right inside of my throat, but not on the left.
- December 01, 2010: No change.
- January 17, 2011: No change.
- March 20, 2011: Same.
- September 9, 2011: Same.
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- Voice
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- January 23, 2010: I have noticed my voice getting weaker and raspy over time. I pastor a church and I preach four times a week (three times on Sunday). My voice is becoming a real concern for me.
- March 21, 2010: This has not changed.
- April 04, 2010: My voice seems better to me.
- July 24, 2010: My voice is more like January 23 again.
- October 01, 2010: This has worsened. My Uvula is beginning to flop and touch the back of my tongue when using my voice.
- January 17, 2011: This continues to slowly worsen. My voice get weak with use and it is difficult to engage in sustained conversation. I had to shorten my sermons over the last few weeks because my voice would not last.
- March 20, 2011: Same, except I am not preaching now.
- September 9, 2011: Worse.
- Click here for an example of my voice problem.
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Jaw/Temple Pain - January 23, 2010: My jaw muscles hurt when I eat anything hard, such as M&Ms®.
- March 21, 2010: There is no change here. I like M&Ms®, but since it hurts to eat them I have opted for cheese cake instead.
- April 04, 2010: I still opt for cheesecake, when Cathy lets me eat it.
- July 24, 2010: I still have pain in my left jaw, but now the pain has shifted more toward my left temple and really hurts. I am also experiencing pain in the bridge of my nose and slight pain in my right temple. I cannot wear my glasses at present because of the pain. My vision changes somewhat daily.
- October 01, 2010: The severe pain has turned into generalized jaw pain.
- December 01, 2010: This has not changed.
- January 17, 2011: This has not changed and I notice it most in the morning when I have not had my Mestinon. The more I chew, the more I hurt.
- March 20, 2011: Same.
- September 9, 2011: This is slightly worse.
I will do this comparison again in six months.
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