Growing up, I could not do a push up or pull up in gym class, nor could I jump straight up or pull myself up onto my horse’s saddle despite daily riding & exercise. I could run long distances & do a good deal of sit-ups. I had a pretty low immune system, lots of bronchitis, tightness in the lungs & I was generally tired, but pushed myself. Also, my back seemed weak compared to my other muscular systems.

After puberty, I became noticeably heavier bodied than my siblings (sister was size 5, I was size 9/11 in high school, brothers were fit but did less activity/exercise than me), but I remained very active & toned. I questioned my health but my family didn’t have health insurance so I had no diagnosis. No allergies, no diabetes, no high blood pressure, no anemia, no vision or hearing issues.

My first child was born with very severe spina bifoda and my pregnancy was very difficult with severe polyhydramniuos & failure to progress. I gained a good deal of weight with this pregnancy and took a long time to lose it, I became increasingly tired after this pregnancy & never really felt “regular” energy again (its been over 15 yrs). There was massive stress (physical and emotional) in caring for a severely ill & often hospitalized child. I do not have depression though.

After having my second child, my weight yo-yo’d without much reason, I began having IBS and noticeable fatigue that sometimes exhausted me for a full day to three days, but every three or so months, with a marked chronic minor fatigue. But I remained active and fairly strong despite the fatigue issues and aside from the muscle weakness in the areas mentioned above. I began to gain weight that seems unrelated and disproportionate to my eating/exercise. It seems my metabolism slowed greatly.

4 years ago I contracted septic MRSA (hospital acquired) that nearly killed me. I was hospitalized and upon being administered Vancomyacin, I broke out in an allergic reaction/anaphalactic shock that was thought to be from morphine at the time. That night I suddenly erupted in psoriasis around much of the area that rashed up with the reaction to the drugs. Psoriasis never has subsided.

It took months for MRSA to be controlled & came very close to having both arms amputated.

I noticed weakness & loss of coordination in both arms ever after this massive infection nearly took my arms. My SED rate sometimes jumped up into the 30′s – 50′s & then go back down, then my ANA would go up & down without much reason. I was diagnosed with fibromyalgia and yes, I do have pain, but the weakness remains my complaint. Soon I began having ovarian cysts, bleeding and fluid in my abdomen. Then my kidney had a bizarre cyst, and my tonsils and throat became chronically infected (and were removed, along with my uvula and portions of my upper pallet. Soon after, due to radiating pain in my abdomen and the IBs, my gallbladder was removed.

After this did not help my fatigue and increasing abdominal pain, exploratory abdominal surgery revealed minor scarring around my ovary and female organs, & near my kidney. This exploratory surgery left me with a second bout of MRSA & when I was put on Vancomyacin I went into sudden, acute anaphalactic shock, but quickly recovered.

I remained weak and tired and weight and metabolism now became a definite issue. Suddenly about 5 months ago in the heat of the summer (heat and cold are hard on me with pain and fatigue), I broke out in a rash that looked like chicken pocks, and my liver became acutely inflamed. My SED rate went through the roof and I had spikes of high ANA here and there, I became noticeably weaker in my major muscle groups (legs arms, back) and started having severe tightness in my lungs and sometimes my esophagus, with occasional MILD blurry vision.

I have been diagnosed with SIRS Systemic Immune Response Syndrome that caused damage to my lungs and liver. I also was diagnosed with what is believed to be polyarteritis nodosa (the sudden, auto immune skin rash that developed with the liver damage). All Stable currently.

I have been tested for many auto immune diseases and do not test positive for lupus or rheumatoid diseseas. Although Polymyalgia PMR is what my rhuemy keeps looking at.

I had a muscle Nerve conduction study that showed evidence of MG Myasthenia Gravis, but the antibody test was normal. I am on ONLY prednisone that recently brought my SED rate down. It has gone normal before just to come right back (fingers crossed).

In the last 5 months since the sudden onset rash/liver issue, I walk about 150 to 200 feet & get so weak, I feel as if I may fall. I get so winded and short of breath that I fear I may need emergency services, but o2 tests show I’m getting enough. My throat feels as if it may close up as well, but nothing acute has occurred. It is auto immune and a physical finding, and by no means anxiety related. Eyes have no damage.

What are we missing? M
MRSA= Methacyllin Resistant Staph or the Super Bug
Only med is Prednisone (I won’t take pain killers)
SED= Sedimentation rate (blood test shows chronic systemic inflammation) mine is in my vascular system)
ANA= Anti nuclear antibody (blood test)

I have no high blood pressure, no diabetes, no high cholesterol, no cancer (checked and re-checked through oncologist), no abnormal CBC or white blood cell counts.

Seeking help from others with Auto Immune and muscular disease

Thanks!

Thanks Abijann, very good info, truly, I’m appreciative.

I forgot to mention that I do get checked and I do NOT have an elevated TSH, but you are pretty smart as my Dr. keeps on checking this as he too is confused and searching for an answer.

MS is something that is being checked this week via brain scan to start with.

Something I will mention to Dr. this week is Autonomic Neuropathy as sis has an Autonomic Heart Condition… we’ll see. I’m truly scared and suffering, but my spirit is high.

Also, SIRS stands for Systemic Inflammatory Response Syndrome … I goofed above its not Systemic Immune Response but Systemic Inflammatory response.

Looking forward to figuring this out!