Discussions By Condition: I cannot get a diagnosis.

Crippled and Ill-Please help!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: jeanill
  • June 14, 2009
  • 03:26 AM

I am a female-age 56. Sorry this is so lengthy, but I need answers. If anyone reading this knows a medical doctor who can help, please let them know to reply to me. I hope someone can figure out what is wrong with me.:o

These are my abnormal blood tests on the "flowsheet" the nurse sent me, and my doctor would not tell me what they meant: I feel like I am being given the run-around. And that I have no control over my own body!:confused:
1-ANA by EIA: 2.9
2-SSB: 1.4
3-AChR: 1.2
4-CCP: 30
5-PTH: 66
6-CK: 236
7-LDH: 327
8-Blood: Alpha 2 globulin: .23
9-Urine: Albumin, alpha 1, alpha 2, beta and gamma protein.

When I asked the doctor what the abnormal LDH test meant, he told me that my abnormal LDH tests was "like a check engine light, and did not mean anything.":(

And a rheumatologist said he "did not think I had a rheumatlogical condition" based on these tests.
I feel like I am being experimented on, and no one wants to tell me why I am disabled. And I have "future tests" ordered for July, and the nurse won't tell me what they are. She said "is there any reason you want to know?" Don't I have a right to know?

In March, a hematologist told me to file for disability, but he did not give me a diagnosis of my disabilities!
These are my disabilities::(
1-I can not do squats, or get up from the floor. (My knees are sore and weak).
2-I can not climb onto a 12" step (the RTA bus step), or get in and out of the bathrub.
3-I can not stand or walk longer than about 20-30 minutes. (My leg muscles burn and get heavy and hard to move.)
4-I can not turn over in bed if I am lying on my back or stomache. (My upper back is paralyzed).

The pain and stiffness started in my legs and progressed up my spine into my neck. My doctors have sent me back and forth from one department to another. They will not tell me what blood tests they are doing, and they keep ordering x-rays, and won't tell me why I am crippled.
What can I do when the doctors keeps me in the dark?

1-How do I find out why I am disabled, and what is causing my constant sacroiliac pain?
2-How do I find out how many new x-rays are ordered of my hands and feet? And if I can have both hands taken on one x-ray to get less radiation exposure? (I have had over 50 x-rays since 2001, when my symptoms started, and still no disagnosis.) I called the doctor's office and the secretary said she did not know what was ordered. I called the x-ray department and the woman said only the x-ray technician knows and she said I could NOT talk to them.
3-How do I find out if puncturing my vein over and over in the same spot is dangerous? I have a visable vein only on my left arm, and it has been punctured about 45 times already. Will my vein collapse?
4-Can I ask for a particular test (LYME DISEASE) and can I refuse a CT scan of my chest? (That is like getting 200 x-rays all at once!) I feel am being experimented on! No one tells me why I am disabled!
The doctor did NOT aske me to lie down and watch how I can not turn over in bed!

The doctor did NOT watch me try to get uot of the tub or climb steps.
But the doctor DID witness that I could not stand on my toes or do squats and did nothing!

I have to find a job and have limited abilities and no diagnosis. What can I do? I have trouble geting on and off the bus.
How can I have some control over my health care? I want to know why I am disabled?

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4 Replies:

  • Okay, let's initially take a look at the lab values that you've posted: ANA/EIA - This specific test is a screening value and is similar to IFA except that it uses enzyme immunoassay to obtain reactivity. Anything greater than 1.1 would be considered positive. Realize, however, that a positive ANA result in of itself is not diagnostic. The anti-SSB is usually performed with anti-SSA but the test is used for specificity of the present of antibodies which would indicate Sjoegren's Syndrome. Generally, a reference less than 20 is negative so in your case, we could presumably rule out Sjoegrens. AChr - This is an acetylcholine receptor antibody test used to screen for Myesthenia Gravis, a neuromuscular disease. The typical reference range for this test is 0 to about .02. Anything higher would indicate a positive result. In your case, a result of 1.2 would be considered highly positive, but other tests such as Tensilon Test and EMG(both Jolly & single fiber) would be necessary to confirm MG. The results of all these tests would provide near 100% confirmation of the presence of the disease. Anti-CCP - is a test we use to look for the presence of Rheumatoid Arthritis. It is usually performed along with an RF test for better discrimination. This test, however, can produce positive results in the presence of various other neuromuscular diseases, so a positive result is not necessarily conclusive. PTH- Although many factors influence the reference range for the parathyroid hormone test, the posted result would generally be within the normal range. CK- is a test used to determine whether muscle damage has occurred and the test is further fractionated depending upon the type of muscle being tested, in this case skeletal muscle. Anything beyond 100 in this instance would be diagnostic, so a result of 236 would represent the presence of muscle damage of some type taking place. LDH - is a test we use to determine the presence of tissue damage, in this case by progressive disease. Although the reference for this test ranges very widely between labs, anything over about 240 would be diagnostic. It would be consistent with the CK test results that muscle damage is occurring.
    JCottleMD 580 Replies Flag this Response
  • Continued from above reply: The alpha2 globulin is part of the serum electrophoresis study and a result of .23 would be lower than the general reference range. A low result would suggest something like hyperthyroidism. In this instance, however, other factors must be taken into consideration. I would agree that the overall results do not suggest a rheumatoid disease, but the EMG and Tensilon test need to be performed, together with an MuSK antibody test to rule out or confirm the presence of Myesthenia Gravis. Other symptoms associated with this disease include ptosis, or the involuntary drooping of the eyelid, symptoms of weakness that grow worse during summer months or in hot weather, double vision, difficulty swallowing or breathing, muscle weakness that is worse at the end of the day and sometimes better early in the morning upon rising. This is not to say that you have MG, but the test results would indicate the need to rule it out. Regarding your doctor, it's very important to be forthright and direct in telling him or her that you don't care for simplistic analogies such as "checking the engine light" and would prefer a straight answer. If they respond with intentional over-complexity, find another doctor. Having someone deliberately insult your intelligence is a sign that their interest in you as a patient is less than genuine. You have the right to copies of all your medical records, with the exception of certain mental health records, and the right to know what the results of any tests mean. If you're not being evaluated by a neurologist, then my suggestion is to obtain a referral. Your primary care doctor should be following the results and procedures of the tests mentioned above, but a neurologist should actually be performing them. Lastly, there are a number of possible causes for your condition and in all instances where neuromuscular disease is concerned, you should refrain from trying to call the horse before the race. Many such disorders can produce muscular weakness and thorough investigation is necessary before conclusions are drawn. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Dear J Cottle MD, Thank you so much for telling me what my test results mean. :) You are a very good doctor, I wish I had a doctor like you. At least now I have some idea about what is wrong, and what I was tested for. (Other tests I had were CBC and MET and they were OK.) FYI: I was sent to a neurologist and she did nothing except have me sit on the table (fully dressed) and have me raise and lower my arms and legs against pressure, as she pushed and pulled against them. (I told her I have to use my muscles for awhile for them to start getting sore and weak, but she did not listen to me). :( When my AChR test was abnormal, she prescribed prednisone 20mg, and vitamin D ad some other medicine to prevent side effects, but it made me very sick and I vomited. And my muscles still hurt and got stiff and heavy, so I stopped taking the medicine. (Now I have heartburn. I had an ulcer in the 1990's and think the medicines the doctors gave me have brought it back.) I was also sent to a hematologist (the last doctor I saw) and he said they "found protein in my blood by accident, because they were not looking for it, and only found it because their tests are so accurate." And that is the longest explanaton I ever got from any doctor, and it really tells me nothing. And now he has to test my blood in July. I am grateful thay my tests showed something wrong with my muscles, because my symproms have been getting worse and worse. I will post any new test results and hope I get a diagnosis soon. Some days I feel so ill that I can hardly get through the day. And I usually can fall aslep for about an hour in the afternoons, because I am so sleepy. Also: could I have some type of systemic disease?:confused: Jeanill
    jeanill 24 Replies Flag this Response
  • I am so thrilled to find a response on this site which I so fabulously helpful. I read this post initially because it tugged on my heart strings. I didn't have any answers myself, unfortunately. Also, I have a Facilitating undiagnosed medical condition myself which is the reason I landed on this site. Your answer from the doctor gives me hope. To date, I have been unable to join a discussion or post a reply or my own condition. Hopefully, in the future, I'll be able to figure it out. :)4
    Anonymous 1 Replies
    • January 22, 2014
    • 08:34 AM
    • 0
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