Okay, I don't really even know where to start! My doc suspects I may have SLE or MS and many other things i.e. leukemia, hodgkins disease...etc were also mentioned. I have a vast array of symptoms....horrible daily headaches that literally are there 24/7, can't remember the last time I didn't have a headache. Spine pain....ecspecially in the lumbar and pelvic region..though I do have scoliosis (congenital). I have extreme bone pain mostly in the long bones in my legs..and joint pain. I have visual disturbances....I see what looks like snow or lights and many times it looks as though everything around me is shaking, I also get blurry and foggy vision. Pain in the lymph nodes that line the underside on the jaw. Bouts of constipation and diarrehea.....bad stomach pain...enlarged lymph nodes in the stomach found during a surgery. Vomiting and nausea....inability to gain weight...I weighed more when I was 13 then I do now and am currently 24. Ovarian cysts with free fluid in the cul-de-sac. Pelvic pain. Chest pain....tachycardia.....passing out. Muscle spasms.....shooting pains. Vertigo, balance and coordination problems. Inablilty to think of words or get them to come out correctly. Tingling and numbness in hands and feet. Also, my finger tips seem to prune up -like I've been in water- when exposed to cold temperatures. I have difficulty swallowing...things often get stuck...even liquids which I don't even know how that is possible. Constant extreme fatigue....sometimes it is an effort to even move, as if I weigh 500lbs. I could go on and on with many more symptoms. I guess that my question would be...what are these symptoms of and what tests should be done? Should I have an MRI of my lumbar and thorasic spine (already have had ones of the brain and c-spine). I have no insurance and cannot get any because of a pre-existing condition (chiari type 1 malformation--which was surgically decompressed in 2003 and have had no recurrence of that. Please help with any advise or any information you can possibly offer! PLEASE HELP!
- Resources
Hi Chitown,
Wow. With all that you are going through, I can understand your frustrations. You must be even more frustrated because you have no insurance.
The thing about MS is that it has many symptoms. You might want to check Health Central articles symptoms and early symptoms. One of the standard processes toward MS diagnosis is the eliminate many other conditions that have the same or similar symptoms.
Please stay close to the doctors so they can ease your headache and finally diagnose your condition. Good luck.
I am saddened to hear of your situation, especially regarding your "pre-existing condition" health insurance coverage problem. If you are not allergic to any type of shellfish, they have a shellfish dye put into you in an IV that enhances the imaging of the lesions, helping them to better see your central nervous system. I am hoping against hope that our government will force pre-existing condition clauses to be null and void, so everybody that is sick can be treated when they need to be treated.
Thank you for responding. I am hoping and waiting for the day that people who are ill and actually need insurance are able to get it and not be discriminated against. It also deeply saddens me....I guess I am just waiting on the world to change. Until then I am just waiting ... for help, for answers. I know many people are against insurance regulation but with that may come change and help for those who truly need it. Thank you so much for being so understanding and brightening my day a little with your response! Also, thank you for the advice on the shellfish dye injection with an MRI! I wonder if anything can be seen on an lumbar MRI because I have never had one and the pain there is unbearable at times. You are very kind. I hope you are and yours are doing alright and that today is a good day for you. I want to thank you one more time because your message lets me know that there are kind people like you who understand and truly care.
Samantha - Chitown
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Thank you so much for responding to my question! I am very frustrated.....to tell you the truth I have been ill since I was about 15 and am now 24. The thing that makes me even more frustrated is that the only tests that have been done are MRIs of the brain and c-spine! All these years and there has never been any blood work or anything to rule out other causes of the vast array of symptoms. Many docs spend about 5 minutes with me and don't even do an actual exam! Yesterday and today I have a new thing happening....I have ulcers in my mouth that are quite painful. I am not sure if that can occur with MS but like I said I am also suspected of having lupus...now it is just a matter of finding the means to get the necessary testing done...I just wish someone would have paid better attention and ordered tests while I was still insured. I have an appt at a free clinic at a local hospital on the 19th so I am hopeful...but every time I have some hope it seems to be crushed. Once again, thank you so much for responding to my question and I hope you are doing well.
Chitown - Samantha