Discussions By Condition: I cannot get a diagnosis.

Neck tumor

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: irislovingirl
  • March 28, 2008
  • 05:36 PM

I am 27 years old and I have been battling my whole life to find what it is that is wrong. Symptons include: twitches, headaches lasting 7 to 11 days, kiddney pain, exhaustion, fatigue, tired, full body throbbing when I awake, numbness in arms and legs, purple color from lack of circulation, severe abdomenal pain, memory loss, abnormal blood vessals in brain, severe endometrisois, IC(bladder problem), fibro cystic breast disease, acid reflux(no flap in stomach). My symptoms are episodes of severe twitching and headaches. I have gained weight because theres too much pain to deal with and it prevents me from exercising. I have been sick as far back as I can remember. I recently found out I have a tumor on my erb's point in my neck. I have been told I will slowly become paralized as the tumor grows. I wonder if it is the cause to everything or just some of the things. Ive been suspected of MS and cardio vascular disease. I can not afford insurance and stopped receiving treatments. I feel I am slowly dying away. What could be the cause to a lifetime of pain?:(

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  • I am not sure there is one cause ....but since you have been batteling your whole life, I am guess it may be an autoimmune disease. Have you been tested for autoimmune diseases? Unfortunatlely they can really account for a variety of symptoms and actually some autoimmune diseases can even be hard to diagnose. I am so sorry about the insurance..somehow this seems to be to be a priority as you do need care. I am truly sorry that you are in so much pain for so long...perhaps try contacting a local social service, family service or health service and getting some advice on that. I am so sorry about the tumor, but perhaps you may do for getting another opinion about it all.....I hope you can get help with the insurance issue and then find a good doctor....perhaps one who specialized in autoimmune diseases,...and get some care and answers at least for that part of it. Joan
    Joan5555 316 Replies Flag this Response
  • Thanks for the kind words. My boyfriend makes to much money for me to recieve at help from human services. I have battled with those people for years to qualify, but they told me I recieved more than $80,000 worth of treatment already and they refused to cover me anymore. I thought about appealing their descision, but that would cause alot of extra stress. They said if I can prove I'm disabled then they might be able to give me coverage. Then told me I had no chance of that and they didnt expect to see me back. I can not be on my boyfriends insurance because of prior conditions. I dont understand why it is so hard to recieve help and I gave up on trying. I could never afford just one visit to the doctor. This last week I got a severe headache, as I have been dealing with an episode for four weeks. I felt extreme preasure and finally I could feel the blood pulsating on the top of my head. It made me go into a confused state for three hours as I tried to think of minor things. Afterward I slept for 24 hours and barely could stay awake for my daughters. The headache before that caused me to convulse uncontrollably. I just keep hoping the episode will be over, so I may enjoy the beautiful spring. I have wondered if I had an autoimmune disease, but I lost my state aid and discontinued my doctor visits. I was attending the University of Nebraska Medical Center and I felt I was getting adequate care. The local physicians treat me like I make it all up, so I try not to go to them. A year ago at the medical center, I had 3 doctors and 4 med students trying to figure out the cause to everything. Everyday I wonder if this medical nightmare will end. Once again thank you for your response.
    irislovingirl 4 Replies Flag this Response
  • From this site:http://www.emedicine.com/ent/topic323.htm#section~SternocleidomastoidTumorOfInfancy "Sternocleidomastoid tumor of infancy (SCTI) is part of the spectrum of conditions known as congenital muscular torticollis (CMT). It represents the most common neck mass of the immediate perinatal period, within the first 2 months of life. The term tumor is a misnomer because most commonly it is congenital fibrosis within the muscle. The etiology remains unclear, with the most likely cause being peripartum injury. SCTI has a slight male prevalence and occurs more often on the right and with breech presentations. SCTIs are typically a firm, painless mass with fusiform shape, approximately 1-3 cm in length. They are most often located in the inferior to the middle third of the sternocleidomastoid muscle, affecting the sternal or clavicular heads equally.Diagnosis is based on CT scanning and ultrasound confirmation. Open biopsy is reserved for cases that do not resolve. The natural course of the disease is a peak in growth for approximately 8 weeks, with complete resolution by 6 months. Physiotherapy is recommended to achieve full range of motion. Some patients have small areas of residual fibrosis. Surgery is reserved for patients in whom torticollis is present for more than one year, those in whom craniofacial asymmetry develops, and those for whom physiotherapy fails. Long-term follow-up care is essential because of the possibility of recurrence or reappearance of the disease during periods of heightened growth."
    aquila 1263 Replies Flag this Response
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