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Becoming crippled...very ill...no diagnosis!

Posted In: Medical Stories 0 Replies
  • Posted By: jeanill
  • October 22, 2009
  • 02:41 AM

I am becoming crippled. (I am a female, age 56.) I have trouble standing and walking one block. It is hard to climb 5 steps to my apartment. I can not get out of the bathtub, unless I grab the sides of the tub and push myself up with my arms. And I have trouble raising my right arm above my head. I have been going to the doctor for a long time to find out what is wrong. I have been passed around from one doctor to another. The doctors give me blood tests and x-rays but do not diagnose me. I feel like I am being experimented on. In the mornings my joints ache, and my muscles are so stiff and sore that I can hardly get out of bed. My neck is stiff. And I feel very ill and sleepy all the time.:confused:

These symptoms have been getting worse for years. Last winter, a policeman stopped me and said, "ma'am, are you ok?" because I was dragging my legs and walking stiffly. (I was downtown, and had errends to do. My leg muscles were burning and stiff from walking 2 blocks, and I could hardly move them. I had to sit down on a cement step by the public bus stop, and wait awhile before I could stand up again.) My muscles always hurt and get stiff and sore when I use them. It is hard to move my body, and I tremble sometimes.

I lost my job as a cashier because I could not stand very long. Afterwards, I had a desk job, where I scanned books in a library, for two years. In 2008 my shoulder muscles started to get stiff and sore, and I could not do that job, either
At a job interview, this summer, the secretary saw that I could not get out of the low chair (with soft cushions), and told the interviewer that I was not functionally able to do the job. I need help finding a job, and my doctors will not write me a paper saying that I need a chair at work, for future employers!

Every doctor tells me something different! My intern said I had an autoimmune disease (because I had abnormal blood tests and my x-rays showed arthritis in all my joints and spine.) The intern sent me to a rheumatologist who took a LOT more blood tests. These tests were abnormal, also. One test (RAJI) was to see if my immune system was working normally and this test was highly abnormal. The rheumatologist ignored it! Why did he take the tests? I told him I cough all the time because my throat is dry and itches, and I carry a water bottle with me. He said I had dry eyes and mouth (sjogrens syndrome) and that there was no treatment for it. He said I had protein in my blood and sent me to a hematologist. I had to wait 6 weeks to have my blood tested again. No one would tell me anything. Then I had to wait another 2 weeks for the hemntologist appointment to find out the test results. The hematologist said the protein was gone, but that he has test my blood every 6 weks to see if it comes back. He would not tell me what was wrong. He treated me like a baby. He said the protein was a little high, "like having a size 12 shoe, and it has to be monitored to see if it gets worse." I asked for a copy of my blood tests, and he did not want to give them to me. I eventually got them, after calling his nurse several times. The report said "monoclonal gammopathy, and paraproteinemia." (I looked up those words on google and it meant lots of things, like connective tiasue disorders, neuropathy or cancer.) Imagine how I felt. Having to look on the internet to try and find out what the doctor is testing me for! And I don't even know what I might have. Or what the treatment is, or anything! :confused:

My intern also sent me to a neurologist who asked me to kneel down and get up, and walk on my toes. I could NOT do any of these things. Then she ordered a blood test, and said I had myasthenia gravis (MG) a muscle weakness, because the AChR blood test was abnormal. She said it does NOT cause pain. But I have a LOT of muscle pain and stiffness, that gets worse if I stretch my muscles or exercise. Sometimes my muscles get heavy like cement, and it is hard to move my body. She said she wants me to take immunosuppressants for the rest of my life, and the side effects are serious, and wants to moniter my blood every two weeks! And thaI have to make up my mind right away. I said no, and went to another neurologist for a second opinion. He said I did NOT have MG because the AChR test result was low. He did a specefic nerve study test (EMG) for MG, and said I did not have it. During the test (when he puts little shocks into my legs, my head started shaking. But he ignored it. (He wrote that I have severe nerve damage in my S1 and S2 nerve roots, and he did NOT tell me.) I saw it in the medical record, and asked him what was causing it. I told him my toes are numb, and I have constant pain in my sacroiliac area. But he did not answer me.

If all of this sounds confusing..it is. And it is happening to me! The doctors are wearing me down and draining my energy. I dread going to them! Especially since no doctor tells me why I am disabled in both legs, or why I can not stand or walk too long. Or why my muscles hurt and get stiff and heavy when I use them. Or why I stiffen up after sitting and can not get out of a chair. Or why I feel sick every day. Or why I get rashes all the time.

This is a list of my abnormal tests from all the different doctors:
I hope someone will know what all these test results mean? And please tell me if I need other tests?
ANA by EIA: 2.9 (reference <1.5)
SSB: 1.4 (reference <1.0)
AChR: 1.2 (reference .4)
CCP: 30, 44 & 46 (reference <20.) (Getting higher over a 6 month period)
CRP: 2.0 (reference .0-1.0).
LDH: 327 (reference 100-220) Do I need a LDH isoenzymes test?
COMPLIMENT DEF ASSAY: 256 (reference low >60.)
H.PYLORI IGG: 2.93 (reference <0.91)
RAJI: >78 (reference <63.)
Blood abnormal: Alpha 2 globulin .23 (reference .11-.22)
Blood protein called: gammopathy
Urine: Albumin, alpha 1, alpha 2, beta, and gamma protein.

X-Rays Spine: (done last year).
"Curvature of mid thoracic spine, scoliosis in lumbar spine, mild dorsal kyphosis, moderate osteophytes with vacuum phenomenon at several disk levels in mid and lower thoracic spine. Degenerative changes in cervical spine as well."
Also: multi-level degenerative disc disease, mild cervical and lumbar stenosis.
X-Rays Hands:
"Joint space narrowing and osteophyte formation of multiple DIP joints and first CMC joint on both sides..."
X-Rays Knees: "both patellas spuriously elevated" (effusion, under kneecaps found by internal medicine.)
X-Rays Ankles: "Marked flattening of the arch of both feet with bilateral hallux valgus."
EMG: "Severe ongoing denervation of S1 and S2 nerves."

Can someone help me? Please? Why am I disabled?
I need a doctor's statement about my functional limitations, for my vocational guidance counselor appointment, next month. I am at the mercy of the doctors. I have to find a job. I am ill. I am disabled. What should I do? How can I get a diagnosis?:confused:

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