Discussions By Condition: I cannot get a diagnosis.

losing my hope fast....

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Jupiter
  • May 17, 2007
  • 02:37 AM

I was in a bus that crashed off a 50 foot bridge 9 years ago. I broke my pelvis in numerous spots and was screwed back toghther. I also have a rod in my left femur. Other than numerous breaks I had severed nerves and so on. I was doing ok other than hellish pain everyday but about a year and a half ago things started going wrong, before my medical insurance ran out I went thru a lot of test but they couldn't figure it out. They understand the pain dut to full body breaks but its what they can't figure out that is wearing me down. I now have no insurance and moved to a state(unknowingly about the health care here) that has no medical for low income. I need to find a name for this, some answer because some days are just to hard now. These are some of my symptons.....cluster headach that are 99 percent of the time behind my right eye, extreme fatigue that comes and goes but when it is bad I can not even get out of bed(i have 2 kids so I can;t feel this way),memory blanks where I get so confused, loss of hand function...I can life fine but after a few second in morning and evening I drop things, espically if they are small. And if I try to sit something in a specific spot I usually miss by a few inches. My mood swings are out of hand. I pray , mediaite, and have a usually good outlook on most days, but out of no where I become aggressive...to the point of hiting and kicking my husband. He has known me since I was 17 and knows I am not like this. I don't even need to be hassled, I will just get so angry at the nicest people you could ever meet. Tingles in the arms and chest pain that comes and goes through out the day. I fel out of control of myself. I don't know who I am when this happens or why it could be happening so many years after accident. I had blood work done to check for auto immune disorders and the doctor said they came back fine and my cat scan showed nothing, but he agreed that it was something. These things have been going on for so long and as of a month ago I started to break out really bad(Iam 27, and should be thur with this) , and gettting hair on my face. I feel so beyond my years in pain and no longer have the spark that was keeping me going.If anyone could give me a clue or any help I would pray for them ever night for the rest of my life, I would neer forget. Please help. :(:(:(

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11 Replies:

  • I think full spinal (cervical, thoracic and lumbar) and a brain mri (both with and without contrast) would be a good idea in order to see what's going on.
    Anonymous 42,789 Replies Flag this Response
  • dear Jupiter you will see my name all over this forum...there is a reason for that cluster headachesfatiguememory blanksconfusionloss of hand functionmood swingstinglesfacial hair google symptoms of Myalgic Encephalomyelitis look on this forum where I've posted you will find countless people with the same/similar symptoms I'm being tested now for it If you read around this site...you will get the picture good luck and God Bless P.S. the accident, I'm sure caused some of the painbut the other stuff is probably not related to accident...even if there was head trauma
    mommy cat 1,654 Replies Flag this Response
  • Hi Jupiter,I am so sorry to read of all that you have been going through. What a trial! No wonder you feel like you are losing hope. But you sound like you are a very good person, and care a lot about your family, so I do believe you can get your hope back. Right now you are in such a lousy situation, but let me see what I can respond to help some.First, I do not understand how you could be without health insurance! Are you in the US? If so, I think the Social Security office may be able to provide you with something as a permanently disabled person. (I know...I hate the idea of claiming permanent disability, but what they really mean, is that there is no sign that you would be un-disabled in a year or more.) Getting back into a health care system of some kind would seem to be a high-level goal right now.There are two things about your case that are the most confusing to me. One, is that you having these troubles come on so long after the accident, and the other is the inclusion of the symptom of hair on your face. The hair suggests a chemical change that must include a hormonal change. So, I have some questions...First, got to rule out the chance that this is a separate issue. Do any other women amongst your blood relatives have any hair on their face? Even at older ages than you? If even one does, it may be that something was triggered from all the other troubles you are having, and that is just some kind of genetic thing. But if absolutely not any other women have this, then it seems to be part of your system of problems.The idea that this is connected to your accident seems reasonable, but of course, could be wrong. It could be that the accident left you more susceptible to something. But that would still leave the question, "to what?"Your symptoms sound incredibly debilitating and frustrating, for you, and for your family. I'd agree with fauve's suggestion of the MRI's (brain first) but without health insurance, you are talking about $1500! (Call that Social Security office today!) As I'm writing this response, I keep going back and reading your post. It is a little hard to read in one big block of text, and there is so much information there, every time I re-read, I am finding more bits.So, after reading it for like, the fifth time, I am thinking that maybe you have come down with multiple sclerosis. Take a look at this website, and see if it sounds like you: http://www.msfocus.org/info_symptoms.phpIf so, and you can get a diagnosis, you might be able to get into a study, where they would provide treatment, and not charge you (some even pay you.) An example of a couple of studies (I know nothing about these...just found them on the Internet) is here: http://www.novartisclinicaltrials.com/webapp/portals/MSClinicaltrials/page.do?page=DoYouQualify&pl_id=bmrmsk100476&gclid=CKi7sp6PlYwCFSM0gQodPBqWlgThere are definitely medications for MS, that would help the symptoms, if that is what you have. But there is no facial hair in MS generally, although I suppose it is possible, if there was a lesion in a place that messed up your hormones. And it may be that similar hormone problems are causing your face to break out (though that might be made worse by the stress of all this).So take a look at that site, and see if the symptoms connect for you. Then write back, and let me know. I'll respond more when you write back.Meanwhile, see if your library has the book "Full Catastrophe Living" by Jon Kabat-Zinn. It is the book he wrote that covers the entire six week course he developed for the University of Massachusetts Medical Center in stress reduction for patients with intractable pain and other stressful symptoms. The subtitle is, "Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness." Since you are already meditating, this book will not be too difficult for you to follow. And it might seem like an oversimplification, but reducing stress will help you in so many ways. High stress levels can mess up your hormones even more, and your depression seems pretty bad right now. Your kids and your husband need you, and I can tell that you want to be there for them. This book is big, and not always an easy read, but at least it will give you something to do to help yourself get better.Keep hanging on...I promise, it is worth staying with it. I'm glad you found this site, so you have a place to "talk" about all this.Blessings to you,Shula
    Anonymous 42,789 Replies Flag this Response
  • I agree with MommyCat. I have EM/CFS and some of the symptoms are very similar. If you suggest it to your doctor, he will check to discard other physical causes (that should include brain problems). Check for Chronic Fatigue Sindrome on the web for a list of symptoms to see if you fit in there: no one knows you better than yourself!Good luck.
    Anonymous 42,789 Replies Flag this Response
  • Jupiter Hopefully the advice that has been given thus far has helped, all good advice, and I agree that you do need to see a DR. I am not sure if this agency would be able to help you but it's worth a shot and for to keep it in mind, they also may be able to assist you in pointing you in the right direction. It's call www.uneedpsi.org they help with insurance copay, premiums etc... to include getting insurance (I believe). I would agree with both shula and fauve, they only other thing I could add to what they said, is check out the tread in "tell us your medical story" about the vitamin b-12 defiency, I don't know if that fits your case. But B12 can become deficeint with surgery, and by the sound of it you had plenty of that. Its a real long thread, but I think with the first few pages, you will get the picture. Bottom line, it can mimic MS syptoms. Take care, Cala
    Cala1234 57 Replies Flag this Response
  • Thank you guys for your answers, the disibilty aspect for health insurance is something I have started and being pushed away at every cornor. I was living in Washington and had full medical, dental and vision care but to be with my extended family i moved to Arkansas where they are less than helpfull to say the least. I was in the accident before i had worked enough hours in my life to get SS and as for SSI I can't find anything out. I kept having to gather more and more papers and most of them since I was treated at one of the busiest tramus centers in the US, well..they don't seem to want to return my calls.MS is what i keep thinking it was when I would search the symptoms it would always pull up and even my husband would get tears because it sounded so much alike, but the urgent care doctor down here that I went to because i truly felt like if I didn't i would die did blood work(nothing else, no spinal taps or anything) and said the blood work came back showing that i don't have a disease along the lines of RA or MS. Hes stumped, and he wants to help but hes just an urgent care doctor and he has done more than he ws suppose to already. If the other things you guys mention could be the answer wold they of showed up in the same blood test that i was given? I have done hours and hours of research because I have to take care of my family....my husband would burn down the house in a day if I wasn't here(and I am the one with problems), so thank you and please know that it means so much that you would take the time out to help.
    Anonymous 42,789 Replies Flag this Response
  • Jupiter I am not a medical professional; however, my understanding of MS, it is not diagnosed through blood tests. If someone is showing signs of it, an MRI of the brain and C spine are done looking for lesions. Spinal taps are done looking for O bands (I believe O) in the fluid. And a neuro exam. ETC... it sometimes takes a long time for the diagnosis. I would agree with you and the other posters that you are showing signs of MS. B12 defiency is a blood test, I would check with the hospital where you went to ensure you were tested. B12 can mimic MS and other neuro disorders. And there is a lot of information on that subject on another thread. Good luck, and don't give up. There are wonderful people on these boards, that care and want to help or even just listen if that's what you need. Cala
    Cala1234 57 Replies Flag this Response
  • Dear losing hope...ME/CFS it's everywhere read last 4 pages of "It's a mystery until we solve it"-mommy cat You will find so many others with similar symptoms only a matter of time until the rest of the world sees what is happening I have a 40 yr old aunt...diagnosed with MS I have mother, aunt and sister in laws mother diagnosed with Fibromyalgia I have 2 nurses I worked with diagnosed with Lupus I have a friend I've met on this site who says doc diagnosed her with Lupus by asking for exhibition of certain symptoms...no tests were done, yet she has Lupus because of the butterfly rash and other sx I have a sister who had experienced red, swollen, warm, painful nodules up and down her legs on/off since childhood...diagnosed as a mystery form of rheumatoid arthritis How much is enough?Where does Fibromyalgia come from?Restless Legs syndrome?increase in Autism?...is it women who are pregnant with ME/CFS, unknowingly...and pass it to their children??? Like I did...my 16 yo is having symptoms as well Keep the Faith...We're all working on this together...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • This may sound a little odd but have you ever heard of the t.v show "House"? It's sort of a mystery medical show and i've learn a lot of stuff through it. Anyways, on Tuesdays show(may15), they had a case of a 16year old boy with a lot of the same symptoms you have....I cant remember the the final outcome (they go through many possibilities...and even if you dont have the exact same symptoms, they go through each one) but if you can watch the that episode, it may really help you. Good luck
    Anonymous 42,789 Replies Flag this Response
  • Yea, I know which episode you're talking about. The boy had cluster headaches and was treated with 'shrooms. (No lie). I'm not sure how much faith I'd put into the truthfulness of that show.
    Anonymous 42,789 Replies Flag this Response
  • I watch "House" all the time...I love it!!!! He said in that episode "Symptoms don't lie" Please look into Chronic Fatigue Syndrome and Myalgic Encephalomyelitis We are finding many on this site alone having similar/same symptoms headachesmemory lossneurologial things...digestive disturbancesswollen lymph nodesskin rashesjoint/muscle painfatigueand many others please read last 4 pages of "it's a mystery until we solve it"...there you will find many with your symptoms as well Be Well...mommy cat:)
    mommy cat 1,654 Replies Flag this Response
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