Discussions By Condition: I cannot get a diagnosis.

balance problems, falling and more

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: cindy p
  • July 18, 2013
  • 02:13 PM

:confused:I have had these symptons going on for over 2 years. I loose my balance alot. I have fallen. I cant hold my urine in. I wet the bed alot. Also i have headaches in the morning alot. I have even had fecal incontinence I am very tired all the time and have weakness in my legs. Recently my legs just ache all the time now and one is a little swollen around the knee. I have had many blood test done I have seen an infectious doctor who wouldn't even give me the time of day.He thought i was crazy. I have been to 2 uroligist. The first one did test and said i had nothing wrong and did'nt refer me anywhere else. The 2nd one also found nothing and referred me nowhere. I found an neurologist and did an mri on my spine and only found a minor disc buldge on the neck. also a while back i had a cat scan of my brain and found nothing. Because that was done my neuroligist would not do an mri of my brain i had to damand it. They found nothing on that so she says she is done now there is nothing more she can do. I dont know what to do I feel like i am going crazy. I just want to cry. Please if anybody can help
cindy

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  • You need to get a 2nd opinion ASAP! It sounds like it could be a disk injury around L3-L5. I had similar problems & was hospitalized for 4 Days. & every test under the sun! I was released with a (mis) diagnosis of Multiple Sclerosis. My foot started turning purple & my symptoms continued to worsen. I got a 2nd opinion. The Neurosurgeon (go see a neurosurgeon or 2,3,5 if you have to! Not a neurologist!) the neurosurgeon at the hospital misdiagnosed me. His partner reviewed my medical charts & said, "I need to operate on you TOMORROW or you're gonna lose your foot! My partner misdiagnosed you when he said that you only have a 1mm bulge in your disc! It is right here on your CT-Myelogram (your doctors should've done a CT Myelogram & a spinal tap with your symptoms)...your disc BROKE & it has floated around & lodged itself In your sciatic nerve. We need to operate right away so be at the hospital at 7am tomorrow." (It was 8pm at night when he called me into his office after returning from a month long vacation.)I've been fine ever since! (Knock on wood & praise God!) Doctors are lazy & distracted, so do NOT settle. Remember that 1/2 of all doctors graduated at the bottom of their class!!! If you're in Southern California, go see Dr. Moustapha Abou-Samra. He was my surgeon & the lawyers & Judges in Ventura County use him as their surgeon when they need one. My opinion is that if THAT many lawyers & Judges trust him with their bodies...he's obviously good & not making mistakes! I'm soooo glad he saved my life. I had been in a wheelchair for a month, had been wearing Depends & couldn't walk, go to the bathroom, etc. FORCE the doctors to do their homework...do not settle for C's from them!
    Lawyerchick 1 Replies Flag this Response
  • As stated above with these symptoms, it must be very painful. And the worse thing is being not diagnosed properly. It can be due to various reasons. With proper tests, the disease can be known.
    Ammy Wats 53 Replies Flag this Response
  • Hi CindyThere are so many people who have had to put up with doctors who were callous or rude or disinterested, but for every incompetent one out there is one good one also, so please don't get too discouraged ok? You may have to be persistent, but there's going to be someone out there who can find out what is wrong with you.Ok so about your symptoms. I wouldn't bother seeing urologists or infectious disease doctors anymore, because I don't think they have the proper background to be able to diagnose or treat you. Your symptoms of fatigue, leg weakness, bladder/bowel malfunction, myalgias, headaches, and swollen knee seem indicative of either an autoimmune condition, neurologicsal condition, or possibly some form of endocrinopathy. I would definitely recommend focusing your efforts on trying to get an appointment with either an endocrinologist or a rheumatologist, because you have already seen a neuro who ran the appropriate tests to rule out (tentatively) diseases like MS. Because you are a woman, you are unfortunately at risk for a bunch of conditions from those categories which could explain your symptoms. I will give you a small list: endocrine: diabetes, thyroid diseaseautoimmune: MS, vasculitis, Sjorgen's Syndrome, Lupus (SLE), CIDPThat's not an exhaustive list by any means, but it does give you a few things to look into and discuss with your doctor. The important thing is that you get referrals to the right specialists, because many, many diseases can be tricky to detect, such as vasculitis, especially if they are presenting in an atypical way. I don't think you're crazy at all, those symptoms you mentioned go together clinically and can be caused by a lot of different things, so keep your head up and keep looking. If you can tell me your age, the lab results that you've had thus far, and think of any pertinent medical history, then I might be able to offer some more suggestions.
    Aaron-o 27 Replies Flag this Response
  • OH also, please get your Vitamin B12 levels checked by your GP!! Ideally, no matter what the lab range tells you, your vitamin B12 ought to be at least 550/u okay? Low vitamin B12 can cause demyelination and similar symptoms to MS, and when I see your symptoms all I can think of is ms, ms, ms. And yet, your neuro obviously would have checked for it - a clean MRI on the brain and spine makes a diagnosis of MS very unlikely, but a B12 deficiency can cause the same problems. Please read up on it.
    Aaron-o 27 Replies Flag this Response
  • These are answers to other peoples post about mine. I am 54 yrs old. I have had the brain mri and there is no ms. And i have only had the regular blood work done. To the person who had the floating disk how long had you had your symptons. Did you have balance problems to?Thanks cindy
    cindy p 2 Replies Flag this Response
  • I also had your symptoms, Cindy. Just walking hurt my head! In my case, my spine was being pushed flat due to spinal stenosis. A ligament had calcified and was pushing on my spine. I ended up having surgery, not to correct the problem, but to keep it from worsening. I still have back problems but that issue is taken care of. I had a good neurologist diagnose me and 2 neurosurgeons confirmed. Good luck!
    Anonymous 1 Replies Flag this Response
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