My doctors treat me like they don't care. :mad: I am crippling up and it is gettting worse each year! (I can not stand or walk too long or climb steps), and I feel ill and am in pain every day, and tremble sometimes. I also get rashes that last less than an hour, and have severe morning stiffness in my back, and neck.
So I have been trying to find answers on my own. And I sent an e-mail to my neurologist saying that I found out my blood tests could mean I had muscle damage.
On Monday, 6-22-09, my neurologist did not answer my questions about my muscles. She was mean to me, because I questioned her diagnosis of Myasthenia Gravis (MG), and I wanted to know if I actually had MG, because she said it is "painless" and causes "fatigable muscle weakness." And I told her I have "fatigable muscle PAIN, stiffness and paralysis," first in my legs and now in my shoulders. She yelled at me and said I have one minute to make up my mind if I want her to treat me for (MG), because I would have to take immune suppressants for the rest of my life, and the side effects are NOT benign. Otherwise I should get another doctor. The prednisone (20mg) she gave me did not help my muscle pain and heaviness. It made me sick. And I think it gave a stomach ulcer, so I stopped taking it, after a month!
She said my muscle pain was from arthritis, even though the rheumatologist said it was not. And she said my trembling was from weakness! HUH? I do NOT believe this!
She blamed all my symptoms on MG, and blamed me also...and said "You did not have the CT scan of your chest, and people with MG could have thyoma (cancer of the thymus) and I might need to a thyectomy!" :eek: I told her a CT scan gives the equivalent of 220 X-rays all at once, and I have had over 97 seperate X-rays in the past few years already! And now a hematologist is telling me I might have cancer of my bone marrow!
I told her I have tremendous pain and weakness in both knees when I try to get out of the bathtub. (I am basically disabled in both knees, and have to use a bathtub chair now.) And the bones in both legs hurt when I stand up and put weight on them. My muscles feel heavy, like they are made of cement, when I use them. And it is hard to move my body, after awhile! These symptoms first happenned in my lower body, and then in 2007 my shoulder muscles started gettting sore. My upper arms hurt when I wash my hair, and my neck is stiff all the time!
When I left, I was completely broken down, like I always am by the doctors, and was almost in tears!:(
This neurologist had ordered two blood tests for MG, (an AChR test which was positive-1.2, and a MUSK test that was NEGATIVE). A doctor in another forum said a single fiber EMG test would confirm the diagnosis, but she NEVER ordered a single fiber EMG! She ordered a different kind of EMG, instead.
At my appointment she did not examine my disability! She only had me press my arms and legs against her hand as she pushed against me. But she DID see that I could NOT stand or walk on my toes, and did nothing! I told her I can not squat down and get up or turn over in bed and she ignored me. She refused to watch me try to get up off the floor, or watch my inability to turn over in bed! Why? And when I handed her my "Activities of Daily Living Assessment Form," she returned it! I wanted a letter diagnosing my disability, and she would not give it to me!
I have been given the run around for years! I was sent to other doctors including a rheumatologist and a hematologist, also. All the doctors treat me like this is a circus. One doctor said I have ataxia and an intention tremor (when I sat on the floor and showed him I could NOT get up!) So he ordered a blood test for VD, and it was normal. Afterward, I googled ataxia and intention tremor and found that those are symptroms of Multiple Sclerosis!
FYI: I asked the neurologist if I had Multiple Sclerosis? And she said "the MRI of my upper back was normal." But, I thought MS lesions could only be seen on an MRI of the brain. And a different doctor had ordered the MRI of my upper back last year, (because of severe stiffness), and it was NOT normal, because it showed arthritis of the spine.
Three months ago the hematologist said he thougfht I had bone marrow cancer because I had traces of protein in my blood. (He called it monoclonal gammopathy.) And he said they found it by accident, because they were not looking for it! So what WERE they looking for? I started to wonder what tests I REALLY needed and what the doctors were overlooking! He told me he was ordering follow up tests and I wanted to know what he was testing me for. He said to call his secretary. Bur she would not tell me. She said "Is there any reason you want to know?" So I said "Is there any reason you don't want to tell me?" And she said it is a long list of blood tests, and she can't read the whole thing over the phone. So I said, "Why can't you print it out and I will come upstairs and get it!" And she said "Are you in the hospital?" And I said "YES!" Well...this conversation went on and on, and she finally said she would fax the list to the downstairs desk. I had to google them, andd all the tests were for bone marrow cancer...And afterwards, I went through the same thing trying to get a print out of the test results, because she did NOT want to give them to me! Why???
So why do my doctors treat me like they own my body and will not tell me anything they are doing to me? Don't I have a right to know??? I have stories like this from ALL my doctors. :mad:
Well...now the hematologist has changed his mind and said he did not think I have cancer, because the first blood test showed protein in my alpha region, and the second blood test showed protein in my gamma region. (I do not know what any of that means, but I think the doctors are playing games with me.) But he has ordered another set of tests for July! And the neurologist said the immune suppressants she wanted to give me would target my bone marrow! Why my bone marrow? And the hematologist's nurse said I would have to take chemo pills!
And the rheumatologist said that I have osteoarthritis in my neck, back, hands and feet. X-Rays showed Osteoarthritis in both hands, both feet, and that my patellas (knee caps) are spuriously elevated. The MRI of my spine showed degenerative disc disease at every level of my spine including neck, thoracic and lumbar, and multi-level hamangeomas and vacuum phenomenon! And the doctor said my MRI was normal!? Is it normal to have OA in so many places when I am a female age - 56? Could I have an undiagnosed systemic disease? I also have sores in my mouth. (I used to have them 50 years ago when I was a child, and now I have them again.)
The rheumatologist said he does not think I have a rheumatological disease.! And he NEVER diagnosed why I have SEVERE morning stiffness in my sacroiliac and neck, that has been getting worse for years! So I think the doctors want to cover up their mistakes, and are not telling me the truth. (Could I have Lupus?)
Does anyone know what could be wrong with me? I am trying to help myself! Are there any illnesses that do not show up in the common blood tests (CBC, MET, TSH), which were basically normal. (My abnormal tests were: CCP-30, ANA by EIA method-2.9, PTH-66, CK-236 (normal the next time it was tested), LDH-327, Blood, alpha 2 globulin-.23, Urine-Albumin, alpha 1, alpha 2, beta and gamma protein.) I also have untreated high blood pressure 155/92 and hyperlipidemia.
The hematologist said my abnbormal LDH test "did not mean anything...it is like a check engine light." What does that mean? If my abnormal blood tests don't mean anything, then why is he taking them every three months?
Could I have LYME disease? I had a rash on my left inner ankle in 1991, and did not go to the doctor because I did not know about Lyme disease then. I asked my PCP and she said "Oh, Lyme is not present in Ohio...well, how can she be sure." So I practically begged her and she ordered a Lyme test. Then I researched it and found out I need a WESTERN BLOT Lyme Test to diagnose late stage Lyme Disease, and the test she ordered was NOT the Western Blot Test!
I lost three jobs in the past few years because of my disability and now I am underemployed as a part time file clerk. I have to find a better job, and can barely do this job! I am at the mercy of the doctors who do not diagnose me. I take public transportation because I can not drive anymore, and I have trouble getting on and off the bus!
The doctor's diagnosis of osteoarthritis (and can someone tell me if it is normal to have whole body ostroarthritis, and what it means), and MG does not explain my muscle pain, fatigue and stiffness. Or why my muscles feel like cement and are hard to move. Or why for the past two months (since I took the prdnisone) I have been so sleepy all day and tired? Shouldn't the doctor have taken a cortisol test to test my adrenal gland for fatigue? (I read about this test in a woman's magazine.)
Why am I crippling up? Why am I sick, with rashes and trembling? Why do my muscles stiffen up with burning pain when I use them? Please help me...someone. - Jean