Neurological Problems

[ILvision]

I have had many neurological episodes since January 1999.  Starting with severe vertigo - could not lift my head off pillow for three days.  In June 1999, I could feel in the middle of night my joints begin aching - starting with my outermost joints moving in to all my joints.  By morning, I was unable to get out of bed without assistance.  Walking/moving was extremely difficult and painful.  GP ran test: ANA, RF, SED rate, Lyme's and prescribed steriods.  ANA/RF came back first time positive then second time negative.  SED rate was elevated to 41.  Steriods took the edge off the pain and stiffness after a week but still continued to have problems for weeks.  Developed rash that was chalked up to medication issue.  Referred to Rheumatologist who diagnosed "post viral inflammatory arthritis" after more blood tests/DNA strand tests/Xrays came back negative for RA and other Autoimmune diseases.  In April, I had strep throat, thus the "post" viral diagnosis.  I had joint and muscular problems for several years after 1999 but nothing was diagnosed during those episodes - SED rate was elevated each time - all other test came back negative.  In 2001, developed vision problems which continue to this day.  Blurred vision, double vision, graying out vision, black out spots in vision, even total loss of vision for 1-2 minutes.  Dizziness recurs with visual symptoms sometimes.  Pain/Pressure/Burning behind eye/eyes at times.  Headaches with and without visual symptoms.  I also have had episodes that include numbness and tingling, paralysis, shaking of limbs.  Most recent episode (2nd worst), October 2007 - vision problems (blurred-like looking through rain smeared windshield), dizziness when turn head to left, weakness/shaking of right arm, severe nausea and loss of appetite.  Ended up in ER - blood tests, urine tests, CT Scan, Chest X-ray, and EKG were all done - everything came back normal so they released me.  Neurologist saw me the next day - sent for MRI and field vision.  Both came back normal.  Vision problems have been continuous since this day - all day, every day.  Periods of dizziness recur at least 2-3 times a day.  Right arm is still somewhat weak and shaky - nausea is better but not appetite.  Three weeks after this started, I ended up severely ill with what appeared to be strep throat - started antibiotic and despite completing the antibiotic my lymph nodes have become more swollen and tender in my neck and now all my lymph nodes throughout my body are swollen.  GP ran CBC w/diff. and SED rate.  White cells showed on the high end of normal; tests revealed anemia; and SED rate is the highest it has ever been during an episode.  GP concerned ran iron level tests, folate, and B12 test all of which came back normal still need stool test results.  More past info:  I have been referred to neurologist several times, have seen eye doctor often, referred to neuro-opthamologist - Have had lots of blood tests/DNA strand tests, xrays, MRIs, CTs, VEP, visual field test, vision exams.  All doctors believe something is wrong but all the puzzle pieces have not been put together yet.  Each doctor has mentioned LP test which I have declined.  Many possible diagnosis' have been mentioned including:  MS; Lyme's; Lupus; Pseudo Tumor Cerebri; autoimmune diseases, and leukemia/lymphoma.  What are your thoughts on my situation?  Is it possible to have one of these with all most all the tests coming back negative?  What else should be done or considered?  After 9 years of no diagnosis, I am ready to figure this out, even if that means a LP.  I just need some answers.  FYI:  I am being referred to teaching/research hospital and neuro-opthamologist - also suggested I see another Dr. for swollen lymph nodes, elevated SED rate and anemia.  What questions or suggestions should I mention at these appointments?

[Doody]

Any chance you have been exposed to harsh chemicals during this time.  They will attack all parts of the body due to the toxins the body spreads.  Something to think about.

[patsy10]

Lyme causes all of those symptoms.  You can test negative and still have it.  It's very hard to diagnose.  The longer you have it, the less likely you are to test positive.

[ILvision]

Thank you for your input.  As I'm sure you know, I have been on the internet for several years and have come across the Sarcoidosis information before and wondered if that might be me.  I will definitely take note of the tests you suggested and have the DRs run them.  I also am thankful for your words about this not being a "sinister" illness.  My worst fear is that they won't figure this out and I will lose my vision completely.  Each day is truly a blessing.  Thanks again.

[namami]

Hi,
I am sorry for your chronic illness and lack of definite diagnosis till date. As I read the detailed account of the course of your illness, I could not help but feel that this reads so much like a case of an undifferentiated connective tissue disease. Don't ask what it means, and how it will pan out as the same is difficult to predict as the name 'undifferentiated' itself suggests. Another possibility here is Sarcoidosis and I would strongly urge you to get evaluated for the same. The only problem here is that Sarcoidosis is itself a diagnosis of exclusion and there are no definite diagnostic tests. However, there are investigations that may be used as corroborative evidence for the diagnosis of Sarcoidosis. Some of these would be serum ACE levels,  serum Ca and urinary Ca. Moreover, any of the involved (enlarged) lymph nodes should be biopsied and histology can provide useful clues to the diagnosis. If there is a silver lining to this, it would be the negligible likelihood of this being a sinister kind of medical illness as any such thing would not have gone on for 9 years. Take care and all the best.