Help Save My Life- I need your help

I'm a 39 year old male, and for 18 years I've been suffering from some kind illness that causes crippling fatigue, pain and memory problems. I've been to dozens of doctors, had hundreds of tests and spent thousands of dollars. It's only getting worse. I'm suffering all the time. I can barely work, and am seriously in danger of losing my job. It's only through insane amounts of effort that I manage to get anything done at all, and even that is no longer working for me.

I'm so tired that I can't enjoy anything. I can rarely even watch television because I get so tired and frustrated that I cannot follow the plot. I've gotten lost driving home from work (a route I've driven hundreds of times) because I was so tired/confused. Every day I wake up exhausted.  Life is an endurance marathon for me.

Can You Help?

I've tried everything I can think of, and lots of things I'd like to forget. But I'm all out of ideas. I really feel like I'm at the end of my rope. Here is the typical pattern I've been iterating over for the past 18 years- lookup a new doctor; schedule an appointment; doctor runs whatever kinds of tests he or she specializes in; tests come back normal; doctor runs out of ideas, and sends me off. I understand that it's not an easy case, and I don't expect a miracle. But I would really love to find an advocate that could help me figure out what that next step would be, which specialist to see, etc.

Please help me figure out what to do. What kind of test should I ask for? Any recommendations at all would be really, really welcome. I live in the Cleveland, Ohio area.

Symptoms

• severe fatigue
• non-refreshing sleep
• memory loss, inability to concentrate or focus
• muscle pain
• dizziness
• confusion
• numbness
• loss of dexterity
• nasal congestion, always having to clear my throat
• heat intolerance- I absolutely cannot stand the heat- fatigue is magnified by it

The Details

It started when I was about in college, about 20 years old.  I started feeling unusually fatigued. I'd suddenly feel physically weak, have trembling hands, and need to sit down.  I thought it was due to a poor diet- I became a vegetarian in school, but wasn't terribly good about eating a balanced diet. When the fatigue got worse, I decided to start eating meat again. Unfortunately it didn't help.

I started having trouble with numbness in my hands.  I used to play classical guitar, but the numbness worsened, and I could no longer "feel" the strings well enough to play. I would reach for a cup of coffee, and instead of grabbing it, would fling it across the table.  I developed pain in my hands and arms which no amount of rest seemed to cure.  It feels as if someone is pulling my muscles tightly- picture a rubber band being twisted up by rolling a pencil.

The numbness and pain moved to other parts of my body. I started feeling it in my legs, and had trouble walking.  I'd have trouble tripping all the time, feeling like I was dragging my feet.  I developed dizziness. Walking has become more and more difficult, as I have a hard time judging where I am spatially, and movement is disorienting. I developed a constant ringing in my ears, and at times my hearing "turns off" (one ear at a time, thankfully.)

As time went on, other symptoms started piling up. A sudden and unexplained bout of prostatitis (inflammation but no detectable infection). This left me unable to urinate normally- I dribble all the time.  My digestion is a mess (having to go 3-5 times a day, gassy all the time).

I do have a positive diagnosis of Hashimoto's Thyroiditis (where your body attacks the thyroid gland), for which I take Synthroid and Cytomel. According to recent bloodwork my levels are where they should be, so the medication seems to be correct.

I've also learned recently that I have an elevated IgA, which I'm told "is consistent with monoclonal gammopathy, and may explain your peripheral neuropathy".  The doctor (an endocrinologist) did not really explain that very well to me, except to say that there's not much that can be done for it.

Things I've Investigated

• Sleep Apnea- I've had 5 or 6 tests done over the years. Occasionally they will find a "small to moderate" amount of OSA, but after 6 months with various CPAP/BiPAP machines I never saw any improvement in how I felt in the morning.  I had a very expensive ($7K) dental device made, which proved similarly useless.  I even had a surgery to remove my uvula after one doctor suggested I had "upper airway resistance syndrome".  My gut feeling is that there may be some OSA involvement, but it's not the primary cause of my fatigue. 

• Lyme Disease- this was my initial suspicion many years ago, but the tests were negative. Tested again in 2008- came back positive, but after a year of treatment with every antibiotic imaginable (oral, but not IV) never yielded any improvement. 

• Multiple Sclerosis- ruled out by MRIs.

• Antidepressants- tried every kind imaginable for about 5 years. Several doctors tried these, suggesting that while any depression I might have is not primary, it's a common side effect in anyone with a chronic illness, and treating it might help.  SSRIs would always seemed like a silver bullet in the beginning, since it would drastically improve my mood, make me feel care-free and happy for a few weeks.  But it really didn't help with the underlying symptoms (fatigue, pain, confusion), and after a few weeks I'd feel worse than when I started.

• Fibromyalgia- tried Amitriptyline, Lyrica, etc.

• Psychotherapy- tried this for 9 months. After enough doctors tell you "it's all in your head", you'll try anything.  

• Vitamin D- was tested recently and found to have to have an extremely low level of 8ng/mL (should be 30-74).  Consequently was prescribed 1000 UIs 2x daily.  Saw a dramatic improvement after about a week. Doctor then put me on a 50K UI pill once a week.  Had a negative reaction to that- very tired, headaches, nausea. Went back to taking 1000 IU 2x daily, and headaches etc. went away, but so did the initial improvement.  It really felt like magic when it worked- I felt more awake, less pain, more focused, could think more clearly, but then it all went away.  I kept thinking that the dose was too high, or too low, but was never able to reproduce the improvement I had in the beginning. Maybe it was just a coincidence. I've since had my D re-tested, and it's within normal range (25-OH, Total: 47, D2: 35, D2: 12).  

• tested for allergies- tried this in the very beginning, and the even the doc was surprised when all the results came back negative (because upon physical exam, he observed obvious irritation and congestion typical of an allergic reaction). But apparently I'm not allergic to anything.

• tilt-table test- visited a very well-respected cardiologist in Long Island who performed a series of tilt-table tests, looking for Neurally Mediated Hypotension. I had a positive reaction to the test only at the very tail end of it (i.e. not a significant reaction)

• sleeping less- oddly enough, the only thing that seems to help somewhat is to get less sleep. I typically sleep about 8 hours a night, but I find that if I cut that back to 4-6 hours, I feel better during the day. Waking up feels horrible after so little sleep, but paradoxically I tend to have a better day afterward.

Thank You

Thank you so much for taking the time to read through this. If you have any advice or suggestions, please contact me at savemylyfe@gmail.com, or leave a comment on the blog.