Diagnosis?

[kippybugdivine]

My doctors do not listen to me.  I started out with my rheumatologist.  I had extreme weakness in my right arm and tightness in my IT band.  I had an ultrasound on both my shoulders that revealed tendonosis.  It was unusual as I have 34 horses and routinely handle hay, saddles, clean stalls, etc.  I have always been strong.  I went to physical therapy for six months.  My right arm got worse; and the ultrasound on my shoulder showed the tendonosis was worse.  I had also been complaining of cramping in my calves for about a year to both my family doctor and the rheumatologist.  The rheumatologist had an MRI on my right  knee and said I had multiple small tears in my mininus (?).  I also complained of some cramping in my left thumb and trembling in my right hand along with some significant memory losses.  The rheumatologist picked the symptoms apart with a separate cause for each.  I went to my family doctor and complained of my symptoms who also wanted to pick them apart.  I pressed the issue with him who checked my reflexes.  There were none.  He scheduled an MRI on my brain, brain stem and shoulder along with blood work.  The next day I gradually lost feeling in my body until I could not move from the neck down.  I went to ER; and the doctor there did a CAT scan of my brain.  He thought I had MS.  All of the bloodwork, MRI and CAT scan were normal.  My follow-up with my family doctor resulted in an appointment with a neurologist.  Before I could get in to see the neurologist, I had another episode of paralysis which also resulted in me hyperventilating while the paralysis was spreading.  The paralysis lasted a few hours before subsiding; and I also was not able to talk for awhile.  The doctor tried to tell me I had anxiety.  I am one of the least likely people in the world to have anxiety.  I was not afraid; and my heart rate had not gone up.  Since then I have had a progression of symptoms from numbness, weakness and tingling to muscle tetany and frequent occasions of sweating.  I am decidedly better in the mornings.  As I use my muscles throughout the day, they continue to contract and not relax.  I get knots in my muscles, tendons and sometimes pockets of swellings.  When I massage the pockets of swellings to relieve the pain, I develop severe black and blue marks.  If the pockets are not soft but only knots, I do not get black and blue marks.  I finally got to see the neurologist.  I was not impressed as she tried to indicate that I had anxiety, chronic fatigue or fibromyalgia.  She did request a bunch of antibody tests from Mayo.  They are all negative.  I still have an EMG scheduled; but the last one I had I could not tolerate.  I am also not able to tolerate the tens unit in physical therapy.  My family doctor did some additional blood tests that showed my anion gap to be low, ANA titer negative but with speckled positive, increased creatinine and decreased EFGR (?) along with increased serum CO2.  I am on Neurotin.  It helps some.  I am still unable to work sometimes and am not able to help with anything physical or drive.  Any ideas?

[Carol in PA]

The muscle tightness and cramping may be due to low magnesium.  A blood test could be normal, but the level within the muscle and nerve cells could still be low.
The cells use magnesium for all the enzyme processes, and a deficiency causes all kinds of problems.
I know this isn't the entire problem, but supplementing magnesium should relieve a few symptoms.

The Importance of Magnesium to Human Nutrition
by Michael B. Schachter M.D.
http://www.mbschachter.com/importance_of_magnesium_to_human.htm

Wishing you the best,
Carol

[buriedinfur]

While I can't give you any more ideas in direction than you have already, I can say that I sympathise with you and want you to know you aren't alone as far as weird and wonderful things that aren't explainable go.

It's so beyond frusterating when they just label you as 'nothing' and won't help.

Hang in there - try to just plunk along with it and try not to get too frusterated - that just ends up sucking you down in a negative spiral (which is easier said than done I know).

It's great to have support from all the angles you can get it - what you are going through is just as legitamate as anyone who already has a diagnosis, but it can feel like that's not the case expecially when you are getting the brush off.

It also helps to break your paragraphs up  a lot because some people have a hard time reading blocks of writing.