Discussions By Condition: I cannot get a diagnosis.

Doctors made me cry...were mean and cruel...

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: jeanill
  • June 26, 2009
  • 00:50 AM

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

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7 Replies:

  • I just wanted to say how very sorry I am for what you have gone through and still dont have your answer. I know all to well what your going through and I am so very sorry. I wish I could give you a diagnosis but I am not really sure but everything like the tests and doctors is exactly all I went through also it was awful. In 10 months I saw 56 doctors looking for a diagnosis in 4 states, and half said they didnt know and the other half wanted to put me in the mental ward. I did finally get my diagnosis of RSD and 136 doctors later am getting the treatment I need. So I just want to say hang in there and you will find your answer as I did. Niki
    Anonymous 42789 Replies Flag this Response
  • some Lyme info for you.. and YES they do have it in Ohio!! If Lyme disease is left untreated, it may progress in stages from mild symptoms to serious, long-term disabilities. There are three stages of Lyme disease: early localized, early disseminated, and late persistent.Stage 1: Early localized infection (1 to 4 weeks) Some people with Lyme disease have a rash (called erythema migrans) at the site of the tick bite. The rash is usually circular and it gets larger over time. Other people don't have any symptoms in the early stages of Lyme disease and do not remember having had a tick bite. About half the people infected with Lyme disease develop a rash within 1 to 4 weeks.1 See a picture of a Lyme disease rashhttp://img.webmd.com/dtmcms/live/webmd/consumer_assets/site_images/media/interface/camera.gif.For people who live in areas where Lyme disease most often occurs-in the United States along the Atlantic coast, the Midwest, and parts of Oregon and California-the circular rash can be a sign of Lyme disease, especially when it appears during the summer months.Some people with Lyme disease will have flu-like symptoms with or without a rash. These symptoms may include:Lack of energy, which is the most common symptom.Headache and stiff neck.Fever and chills.Muscle and joint pain.Swollen lymph nodes.In some cases of Lyme disease, the person does not notice any symptoms during this stage.Stage 2: Early disseminated infection (1 to 4 months) If Lyme disease is not detected and treated while early symptoms are present, or if you do not have early symptoms that trigger the need for treatment, the infection may affect the skin, joints, nervous system, and heart within weeks to months after the initial infection.Symptoms at this stage may include:Being tired.Additional skin rashes in several places on your body that develop as the infection spreads.Pain, weakness, or numbness in the arms or legs.Inability to control the muscles of the face (paralysis of the facial nerves).Recurring headaches or fainting.Poor memory and reduced ability to concentrate.Conjunctivitis (pinkeye) or sometimes damage to deep tissue in the eyes.Occasional rapid heartbeats (palpitations) or, in rare cases, serious heart problems.Stage 3: Late persistent infections If Lyme disease is not promptly or effectively treated, damage to the joints, nerves, and brain may develop months or years after you become infected (late Lyme disease). Symptoms at this stage may include:Swelling and pain (inflammation) in the joints, especially in the knees.Numbness and tingling in the hands, feet, or back.Severe fatigue.Partial facial nerve paralysis (Bell's palsy), which usually occurs within the first few months after the tick bite.2Neurologic changes, including problems with memory, mood, or sleep, and sometimes problems speaking.Chronic Lyme arthritis, which causes recurring episodes of swelling, redness, and fluid buildup in one or more joints that last up to 6 months at a time.Heart, nervous system, and joint symptoms may be the first signs of Lyme disease in people who did not have a rash or other symptoms of early infection.
    MK1987 35 Replies Flag this Response
  • Thank you and niki1 and MK 1987, for all this information and support. :) First I want to say to niki1 that I am sorry you also went through so much, and am glad you finally got a diagnois. I googled RSD and found that some of my symptoms are similar (the muscle symptoms), and wonder how you finally got a diagnosis? Did one doctor know more than the others? You saw a lot more doctors than I did, and I am wondering if the doctors who could not diagnose you are still practicing medicine! I admire your perseverance, because it takes me a couple of months to go back to my doctors after each visit! You should call a local newspaper or perhaps a national newspaper, and maybe a medical reporter would do story on you. "Woman's Day" and Family Circle" magazine frequently have articles on women who struggled to get a diagnosis for years! They might be intertested in your story! (That is why I started going to the doctor in 2001!) I read an article in "Family Circle," (4/3/01, pgs.15-16), about the actress Kellie Martin whose younger sister Heather "was nauseated and had trouble walking and sleeping." Heather died from Lupus because all the doctors said nothing was wrong with her, and sent her home from the hospital, "even though (her family) had to pick her up and put her in a wheelchair." And now Kellie is a spokesperson for the American Autoimmune Related Diseases Association. And to MK1987, thank you for the information on Lyme disease. :) In 1991, I DID have a rash on my left inner ankle, and I found a tiny black bug in my sock (I wore crew socks), after walking in a wooded area near a mall, where I had to pick up something for one of my art classes. I did not know anything about Lyme disease then, but have read about it recently. At that time, I had gone back to college as a older student, and was in a transition period, moving and getting a new apartment...etc, as a displaced homemaker. The rash got bigger and ITCHED. When I scratched it would itch MORE. And I also had a rash on my body and felt sick (like with the flu). But I still did not think it might be connected, and just thought I had some virus. So I REALLY appreciate the Lyme information. And I will keep looking into this possibility. The Lyme test my doctor finally ordered was NOT a Western Blot, but I DID have some antibodies to Lyme disease. The doctor wrote: Lyme IgG/IgM Ab: Reference Range: So if I had Lyme disase, (late stage from 1991), would it show up in the test she took? Or would I need a Western Blot or other test? I personally believe I have sero-negative rheumatoid arthritis, or Lyme disease or both. And since I believed I was at the mercy of the doctors to order the right test, I felt hopeless.:( But I recently found out about online laboratory services that allow people to order their own blood tests and have them drawn at local labs. Sometimes they call you with the results and sometimes they mail them. I would prefer them mailed, to show proof to the test result. I have been checking websites and found a few that I believe are reliable. (Not all of them are.) And you have to pay for this yourself. But it is worth it if you can get a dagnosis. Here are the labs I think are good: http://www.anylabtestnow.com http://www.healthcheckusa.com I also found out that doctors are responsible for 98,000 thousand deaths a year from medical errors, and the family is not even told the real cause of death!:mad: The Institute of Medicine has this information on their website: http://www.iom.edu/?id=14991 I wrote a 30 page Powerpoint Report on this subject for my final class project when I graduated college. As you can see, I like to write, and I am going to start a blog and list all my appointments and all the mistakes the doctors made. I have to keep going...and not give up! Sometimes people are cruel, like when the kids yelled "quack, quack," when I was trying to get off the bus, and said "look at her-she walks like a duck!" And other times people are nice and help me, like when an older man put his arms under my shoulders and helped me on the bus. (I had been walkling about a half-hour downtown and my legs had become like cement.) So I will keep searching for answers! Thank you again! I hope I helped other people also, because we have to all help each other!
    jeanill 24 Replies Flag this Response
  • First let me tell you this.. The western blot test is the most reliable of the tests.. it can and will detect Lyme in all stages. The standard tests have over a 50% fale positive/negative result!! You MUST request a western blot test!! To me the majority of your symptoms sound like Lyme.. Having been through stage 3 personally, I know a thing or two about it! Depending on your body, and any other underlying health issues.. the Lyme could be exasterbating other problems, or even masking them! Please, I urge you.. go to a doctor and have them run the western blot.. Remember.. Lyme can be treated!! If you are stage three.. you will likely need IV antibiotics, followed by oral antibiotics.. but letting it go undiagnosed and untreated, could be devastating! Best of luck to you!!Stay in touch!! Michellemk1987
    MK1987 35 Replies Flag this Response
  • Hi, I used to have very bad Arthritis in my hands. I was introduce to this health juice called TAHITIAN NONI JUICE. Now 3 months later the pain and swelling has totally disapeared in my hands, i can use my hands againe and have my life back now. This is truly an amazing health juice. The juice is based on the NONI FRUIT from Tahiti. The fruit is high in PROXERODINE, this chemical repairs sick cells in the body. I order the Heath Juice, just by phoning: 1-800-445-2969 From USA, or 08 4561 26664 from the UK and quoting reference: 2443471 Its best to buy in by the case, one case is 4 months supply. Thanks. Michael Lancaster
    MICHAEL LANCASTER 5 Replies Flag this Response
  • Okay, the above posting by Michael Lancaster constitutes a solicitation and under the circumstances, is not appropriate material for the forum. There is no documented scientific evidence regarding the effects of drinking noni juice from the Morinda Citrifolia plant and I would encourage readers to employ great scrutiny of any such claims regarding this posting or any other which appears to suggest curative powers for all sorts of ailments, while simultaneously suggesting that you order the products by the case. Additionally, the ingredient in the fruit is known as proxeronine, not proxerodine and in established and published studies by the medical constituents of the Seminars in Arthritis and Rheumatism, there is no lesser incidence of arthritic conditions between Caucasian and Polynesian population samples studied. One would therefore wonder why polynesians would not have benefited from direct proximity and use of the non-fruit which contains propterties suggested to relieve arthritis and other conditions. You will find a great number of persons with an outright predatory effort to seek out persons who appear desperate and literally loosen them from their pocketbook. I am encouraging the author of the posting to refrain from any further such direct solicitations. If you wish to simply inform people of your experience with the product so that they may investigate it for themselves, then it's reasonable to do so but the placement of an 800 number with suggestions for order sizes falls under the definition of a direct advertisement and well outside the boundaries of material suitable for placement on the forum. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Have you been diagnosed yet, I have the same symptoms right down to the soars in my mouth
    Anonymous 1 Replies Flag this Response
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