Condition Update

I am still being evaluated by Chattanooga Heart Institute for my heart rate problems.


I will keep everyone posted on my progress. My next trip to Vanderbilt is Wednesday, July 7.

It has been a while since I have posted or provided a condition update, so here goes.

Condition Update

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 4, 2010: Part of my nervous system is improving, parts are staying the same, and nothing is getting worse.

July 1, 2010: Some symptoms seem to be worsening again.

Needle Pricks

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 4, 2010: I can feel a few more needle pricks, enough that I just do not poke my body any longer as I once did. I feel needle pricks over about 10% of my body now.

July 1, 2010: I am loosing the ability to feel needle pricks again over my entire body.

Tingling

January 23, 2010: I tingle all over; legs and arms more than the rest of my body. The intensity of the tingling can vary slightly with exertion.

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 4, 2010: This has not changed since March.

July 1, 2010: I am tingle more and more. Over the last few weeks, this is much worse during the night and often wakes me up from sleep.

Tremors

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 4, 2010: This has not changed at all since March. I may have to live with the tremors.

July 1, 2010: The tremors and shakiness have increased a little.

Shortness of Breath

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 4, 2010: This is improving slightly. I still have trouble catching my breath at times.

July 1, 2010: This has worsened since April. I was tested for Primary Pulmonary Hypertension. The heart catheterization was negative for PPH. My breathing and variable heart rate is a major, major problem for me now.

Exhaustion

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 4, 2010: I feel stronger and more rested. I think this is improving with time.

July 1, 2010: This has worsened some. The breathing problems have caused me to feel not as rested as on April. I become exhausted with very little exertion and my heart rate usually elevates quickly.

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 4, 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 1, 2010: My strength has plateaued.

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 4, 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 1, 2010: I cannot walk as far, but may be due to my shortness of breath.

Aching

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 4, 2010: This has not changed since March.

July 1, 2010: This has not changed since March, except that my arms are aching a little now again.

Autonomic Nerves

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 4, 2010: This has not changed.

July 1, 2010: This has worsened.

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 4, 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 1, 2010: This is slightly worse than April.

Body Temperature Regulation

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 4, 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 1, 2010: This is slightly worse than April.

Appetite and Weight

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 on July 13, 2009, without trying to loose 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 4, 2010: This has not changed since March.

July 1, 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 265 currently.

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 4, 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 1, 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.

Orthostatic Hypotension

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

March 21, 2010: I did notice an increase in my pulse rate since the treatments. Before, my pulse would be in the 50's while resting. Last week my pulse rate was in the upper 80's while resting. On Saturday and today, it seems to have dropped to the upper 70's while resting.

I also did a quick check of my blood pressure this morning. My readings were:

Lying down: 157/74 pulse: 67

Standing one minute: 126/69 pulse: 103

Later, I did the full twenty minute orthostatic hypotension test. My readings were as follows.

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

April 4, 2010: I did the full twenty minute orthostatic hypotension test on Saturday, April 3, 2010, at 10:00 AM, two hours after eating. My readings were as follows.

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

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.

July 1, 2010: My heart rate and blood pressure have been very erratic for several week. There is a connection to my breathing problems. Orthostatic hypotension is still present.I did the full twenty minute orthostatic hypotension test on Tuesday, June 30, 2010, at 3:30 PM. My readings were as follows.

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

Peripheral 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 4, 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 1, 2010: This is the same as April.

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 4, 2010: This has not changed, and probably never will.

July 1, 2010: This has not changed.

Voice

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 4, 2010: My voice seems better to me.

July 1, 2010: This is the same as April.

Jaw Muscles

January 23, 2010: My jaw muscles hurt when I eat anything hard, such as M and M's.

March 21, 2010: There is no change here. I like M and M's, but since it hurts to eat them I have opted for cheese cake instead.

April 4, 2010: I still opt for cheesecake, when Cathy lets me.

July 1, 2010: This is the same as April, except I have not had much cheese cake lately and I have a little more pain in my left jaw.

Current Diagnoses

These are my current diagnoses in order of severity on July 1, 2010. All of these conditions may be connected to an autoimmune process.

Autonomic Neuropathy: Diagnosis obtained through clinical examination at Vanderbilt and through testing (for OH) at my local physician's office.

Small Fiber (Sensory) Neuropathy: Diagnosis obtained through clinical examination and evaluation at Vanderbilt.

Paraneoplastic Syndrome: This is still a potential diagnosis through clinical examination at Vanderbilt neurology and hematology/oncology.

Slight Motor-Sensory Axonal Neuropathy: Diagnosis through EMG/NVC testings at Vanderbilt.

Lymphadenopathy: Although this has improved significantly, it is still a potential diagnosis in connection with the paraneoplastic syndrome. Diagnosis through lymph node biopsy at Vanderbilt hematology/oncology.

Tenth Cranial Nerve Palsy