Complex medical problem

[Babk]

I'm not really sure what topic this should go under. I was recently diagnosed with demyelination of the pons. After review previous MRI's, the neurologist determined that I probably have had it since at least 1998, and it has not changed since 2005. A diamox SPECT scan showed that I lack blood flow to the pons and do have hypoperfusion and ischemia (also at rest) in other areas of the brain. This is probably due to small vessel disease in my brain. There appears to be a small aneurysm in my carotid artery as well. Whenever I increase my activity level, my symptoms get worse (weakness, balance problems, fatigue, dizziness). On top of that my low back (multiple problems) is so bad that walking and standing, and sometimes sitting, are extremely painful. I am going to PT 3x/week. I will be out of work the rest of this school year.

Below is a rundown of the progression of my symptoms during the past year.

My questions are:
1. Where do I go from here?
2. Do I need another specialist and further testing? Where & who?
3. Prognosis? What can I expect?
4. Will symptoms continue to progress and keep me from returning to work?
5. Could I have an autoimmune disorder?

March & April 2007 – Asthma problems – prednisone, antibiotic, nebulizer, etc.

5/12, 7/4, 7/12/07 (left side of face felt like I was having stroke) – Shingles, which caused extreme fatigue and weakness

August 2007 - Allergic reaction after ob/gyn checkup
   A lot of back pain all summer

September 2007 – left facial nerve problem again, face buzzing from nose down, increase in ocular migraines. Started with increasing fatigue, weakness, head feeling full, sense of constant motion (cannot pinpoint what direction), balance problems, heaviness like body is being weighted to the ground, face buzzing and hypersensitive.

9/12/07 – lumbar epidural and nerve root block.

10/2/07 – Ear infection

10/12/07 - Asthma (or so I thought) – prednisone for 17 days. Increasingly winded (felt like lungs were not working), heavy/weighted sensation, weak, chest ached and burned, ears and head felt full. I Did not respond to prednisone, nebulizer, and other asthma treatment. I was diagnosed as adult croup. I had a sudden change in vision in right eye. Began having vision problems – sometimes not quite double vision, but eyes feel like they are not working together.

10/25/07 – Ear infected, full of fluid

10/27/07 – Coronary spasms

November 2007 – Worsening of fatigue, weakness, dizziness (sense of being in constant motion), heavy/weighted sensation, face buzzing and hypersensitive, vision problems, poor balance and disoriented, eczema (scalp too).

12/1/07 – Hives, probably post viral – prednisone 14 days.

12/3/07 – Hives flared, asthma started again. Back on doxycycline for respiratory infection – productive cough.

12/28/07 – Hives as allergic reaction to acyclovir – prednisone 5 days

1/9/07 – lumbar epidural and nerve root block.

Please note:
- I was absent more often than present at work starting 10/22/07.
- I have not been to work (I am a teacher) since 12/1/07
- Started using a cane due to severe back and sciatica pain, but it also helps me when I feel weak and off balance
- Use stool in shower due to above
- Handicapped parking permit due to above
- Increase in ocular migraines – in December I lost all vision (complete white out) from the center all the way over to the left for over one hour. This was not a typical ocular migraine for me.
- Increase in pressure headaches
- Recently diagnosed with mild sleep apnea – had treatment phase of sleep study 1/17-
1/18.
- Worsening eczema, hives; problems with skin on some fingertips becoming thick and hard with loss of sensation, then pealing and starting over again.
- The following symptoms are worsening, but vary in intensity and duration from day to day.  Increased activity level and fatigue make symptoms worse. Sometimes I have symptoms all day, and sometimes they start later in the day. They are usually very mild when I first get up in the morning. They always get worse throughout the day. These symptoms are less intense each time I am on prednisone and after epidural/nerve root blocks.
o Fatigue
o Weakness – feeling of my head and body being very heavy and weighted to ground. This makes it difficult to walk (to make legs move, pick up feet), especially going up the stairs
o Dizziness – Sense of being in a state of constant motion, but I cannot determine what direction that motion is. I do not drive when this is occurring.
o Sensation of being off-balance and disoriented. I do not drive when this is occurring.
o Sensations in face – a few times it felt as if I was having a stroke on the left side of my face. Frequently my face, lips, tongue/inside of mouth feel like they are buzzing &/or facial skin is hypersensitive to touch.
o Vision changes throughout day. Sometimes it is more blurry than at other times. Sometimes it is as if it is not quite double vision, but like my eyes are not working together.
o Ocular migraines are more frequent than they had been for the last few years. They involve loss of various parts of my vision, and rarely are accompanied by a headache.
o Memory problems
o Buzzing/pins & needles in various parts of body (mainly face, legs and feet)
o Occasional electrical current sensation from right side of neck into upper back and shoulder
o Occasionally neck feels achy and weak, usually accompanied by a headache
o Cycles of waking up during night with horrid headache
o Difficulty with concentration and attention, blocking out background noise
o Difficulty with word finding

[Babk]

P. S. I am a 49 year old female, married, mother of 3 grown children.