Discussions By Condition: I cannot get a diagnosis.

from perma grin to perma frown

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Melisa43
  • December 31, 2007
  • 07:04 PM

What started out as fairly minor symptoms ten years ago have become increasingly worse over time. The first time I complained they found a brain tumor. The second time I compained they found cervical cancer. The third time it was another tumor. Then degenerative disc desease.
After six surgeries I still have the same symptoms I started with, only they're not so minor anymore. What started as an overwelming fatigue now feels like a stroke. What started as two fingers shaking is now a total upper body tremor. What started as a little stiffness is now a total freezing of the feet and legs. A little leg cramping is now a full body muscle contraction with alot of pain. It now feels like someone is holding my eyes open while the rest of my face is going south. I have an "indian burn" feeling on my arms and legs and at the same time it feels like I have vice scripts hanging off my fingers and toes. I could go on and on with symtoms like hair loss, moments of confusion, cold hands and feet......
When I tell the doctors about these symptoms they tell me "Well you've been through alot and you have to expect some residual effects." But I feel like this has nothing to do with the other illnesses and needs some treatment. How can I convince my doctors of that? What would I ask them to test for? How can I get them to even look beyond the fact that I've had a brain tumor removed.

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6 Replies:

  • I'm so sorry to hear about all of your illnesses! I wonder, do you have regular scans of your brain to ensure that the tumor is gone? I wish you well.
    aquila 1263 Replies
    • January 4, 2008
    • 05:57 PM
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  • Yes, I do have regular MRI's scheduled every six months. Also regular blood test to check for cancer. I have been cancer-free for approximately six years now:). For ther past five years, I thought the symptoms I am experiencing had to do with my back. In November, I underwent a triple fusion. The surgery was very successfull and gave me back the ability to walk and sit for more than a few minutes at a time. Once I regained the feeling in my legs and feet, I realized just how bad the pain from the muscle spasms were affecting me.The symptoms always start with "stroke-like" feeling with muscle pain and spasms. It used to be that they would only hit me once or twice a year. But now they are every couple of months and the symptoms linger on for a month or more every time I get one episode. Over time the shaking has become a constant in my right arm and there is always some level of pain in my hands, feet and eyes. My neurologist referred me to another neurologist who specializes seizures. He confirmed that is was not seizures. I feel if I had some ideas what kind of specialist to see or what I could be tested for, I could ask my doctor. He's currently on the "wait and see" plan. I'd prefer to "know and get on".Thank you for your response. If you have any other ideas, please let me know.
    Melisa43 3 Replies
    • January 4, 2008
    • 07:31 PM
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  • Age could tell us a little more.These symptoms could have little or nothing at all to do with the tumor/cancer issues.Especially given the "moments of confusion" issue.All of your symptoms describe someone who has Parkinsons (mid stage) or Progressive Supernuclear Palsy (PSP). But, they can also all be attributed to someone who isn't taking in enough water on a daily basis. I know, that might sound silly to some people, but test it out yourself. Drink no other liquid but water for a few days. One glass of water right when you wake up, one with each meal, and one between each meal at the very least. You should probably drink even more water than that, but I assume you probably drink other liquids more regularly than water.If you have been drinking little to no water for most of your life, it's quite possible that you have a Urinary Track Infection (UTI), which also causes confusion and skin irritation as well as muscle spasms, tightness and tremors.Of course, I'm not a doc at all, but, I've dealt with both PSP and UTI issues in my family.
    Anonymous 42789 Replies
    • January 4, 2008
    • 09:45 PM
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  • Thanks for your response. I will certainly drink more water. It would be nice if that were it. Didn't know lack of water could cause so many symptoms.UTI would have been found by now as I get regular gynecological exams, urine and blood test. Though, not as bad as they are now, these symptoms have been going on for years. I am 43 now and the slightest of symptoms started when I was just 33.If the water doesn't work, I will ask my doctor about the Parkinsons and PSP.I appreciate the suggestions. Thank you.
    Melisa43 3 Replies
    • January 6, 2008
    • 02:41 AM
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  • Hi. Do you mind providing a little more information? What type of brain tumor did you have, where was it located and when did you have it resected? You describe "stroke-like" symptoms...Have you had a stroke? If so, can you give the details of that events with any residual deficits? Can you describe your cervical cancer diagnosis and treatment in the same way? What are the specific symptoms that you are experiencing now? Your writing was very elegant, but it was hard for me to dissect out exactly what you are asking...
    fewd4thought 126 Replies
    • January 6, 2008
    • 07:46 AM
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  • Hello few4thought,I don't mind providing details at all. The tumor was a grade II astrocytoma, attached to my right optic nerve. It was removed in 1998. The tumor itself was only the size of a grape but had formed a fluid filled cist aprroximately the size of a golfball. The neurosurgeon told me it had been there since I was a child and just recently (being 98') developed cancer. They removed the tumor and left the cist to drain. I turned down kemotherapy (single mom--two small children--needed to get back to work). I didn't have any lasting physical affects from the removal of the tumor. I was having trouble with ringing ears, dizziness and a total loss of my sense of direction. (couldn't tell if I was upside down or right-side up) This episode happen for the first time within minutes of having an overwelming sense of fatigue and stiffeing of the joints. The nuerologist called these seizures. It would happen all at once very fast, but only a couple of times a month. The only treatment I had were pills and lots of them. Siezure medication such as dilantin, tegrotol, neurontin, carbotrol, anti-depressants, muscle relaxers, valuum. None of which had any effect on the ringing ears, dizziness, loss of direction episode. It wouldn't be until years later (2003) When I started taking Keppra that those symptoms lightened up quite a bit. I should also metion that they always seemed avoidable by laying down as soon as the ringing in my ears started or at least bending towards the floor to keep from completely losing my sense of direction. I was always able to get right back up after it happen. All though I eventually went part-time, I have always managed to maintain a job until recently. Currently recovering from my second back surgery (successfull) It's the origional symptoms that finally kept me from working as each episode brings on more than a month of lasting symptoms.Seven months after I had the tumor removed, I had another, what I now call, "stroke-like" episode. At the time they were more like an overwhelming faltigue, stiffening in the joints and buzzing in my body. They also start with ringing of the ears, but very different from the dizzy, loss of direction episode. After these would happen I would get alot cramping in the legs. The fatigue would hang on for a week or so. I seemed very shaky afterwards. I went to the doc and was diagnosed with cervical cancer. It was in the very early stages and was completely removed. The doc told me it was probably because of the draining cist. After that surgery I had alot of muscle spasms in my stomach and my bladder was malfunctioning. They took me off muscle relaxers and I went back into surgery for an AP repair. The problems with my bladder, muscle spasms in legs and stomach persisted. Sometime in the course of the next year the bladder did get better. As far as the fatigue episodes--they always did go away after a nice long rest, but once I was up and back to work, it would eventually happen again. I have never had a stroke, but the fatigue episode was twice diagnosed as a stroke by EM docs and then later, after all test were in, I would be told they were siezures. My blood pressure does ellavate, face gets beet red, irregular heart beat and vision problems. After the actuall episode is when all the other symptoms come into play. Those symptoms are endless. Most symptoms mentioned in first post.I had a second small benine cistic tumor removed in 2000. The docs said due to scar tissue. No lasting affect.Since the first of the symptoms started, I have developed asthma, acid reflux, rapid eye movement and degenerative disc desease. I'm sorry this is so long winded. There really is no short way to give you all the info. I thank you for helping. Let me know if there is any other info that would be of use. Could really use the help.
    Melisa43 3 Replies
    • January 6, 2008
    • 07:27 PM
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