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  • undiagnosed: dr"s say might be fibro

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    Old 08-11-2013, 07:04 PM   #1
    froggirl5296
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    Unhappy undiagnosed: dr"s say might be fibro

    my severe symptoms started over a year ago. i have all over body pain. muscle twitches in arms and legs (including toes). my feet would feel like they were cramping up, then it would slowly move up my legs, passed my knees and into my hips. looked like i had foot drop, i couldn't walk or stand. i was completely numb from the waist down. this would last from a few hours to a few days. it has happened about 8 or nine times over the past year, and nothing seems to be a trigger for it. i have severe back pain, ranging from the base of my neck all the way down to the bottom of my spine, along with severe migraines. i also can't lift my hands above my head while i am standing. i have had an mri of my lumber region, ct of my brain, and NO ONE went over either with me at the hospital and thy were done in January the first ortho said i had 2 ruptured discs and needed immediate back surgery. something told me to get a second opinion, so i took his prescription for PT and did just that. my physical therapist said that my discs weren't ruptured but bulging, and shouldn't be causing me all of my pain. my second ortho said not even bulging, but i did have degenerative disc disease, and again it shouldn't be causing all of my pain. and my 3rd ortho said he is in the same boat with ortho number 2 and thinks it could be fibro, but wants me to see a neurologist. they have tried cymbalta but did nothing but made me feel worse than i already did. now they have me on lyrica, and i still see no differencce in pain or headaches easing off. i haven't had any occurrence of the "drop foot" episodes in almost 6 months. i have noticed an increased pain in my lower left abdomen region. my dr said she is going to get an ultrasound or scan of my belly to make sure it isn't a fibroid tumor..??i am still waiting on my neuro apt. (been over a month) . my confusion is getting worse, memory from moment to moment is horrible. i looked at my scan of my brain and i saw 3 white distinct spots that since no one has discussed my scan with me i have NO CLUE what they could be...does ANYONE have any insight as to what could be going on??? i am a 33 yr old female. the only thing i have ever been diagnosed with is cysts on my right ovary, back in about '96.

     
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    Old 09-09-2013, 09:46 AM   #2
    froggirl5296
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    Re: undiagnosed: dr"s say might be fibro

    ***UPDATE***

    Friday Aug. 6th I had a complete abdomen ultrasound, pelvic ultrasound, and trans-vaginal ultrasound. My dr wants to make sure I don't have any fibroid tumors or anything else that could be pressing against my spinal cord. The trans-vaginal hurt tremendously around my left ovary and it was shooting pains to my back, similar to severe contractions. When the tech had me take deep breaths for the abdomen ultrasound, I had shooting pains in my left shoulder blade, it felt like someone stabbing me with an ice-pick. My memory loss and concentration has also become worse. I am waiting on the results of the ultrasounds and my referral to see the neurologist.

     
    Old 09-27-2013, 09:06 AM   #3
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    Re: undiagnosed: dr"s say might be fibro

    I had another dr's appt this past Tuesday. My ultrasound results came back normal, other than my ovarian cysts that I already knew about. i also had more bloodwork yesterday. Hopefully they will find whatever is causing this soon. The pain is getting worse. I could hardly move my fingers last night, they were so swollen. I'm beginning to wonder if it could be lupus? I have started having a rash on my cheeks when i go outside, and my night sweats are getting worse. i'll be freezing and everyone else will be hot, and still have no fever. In my initial post I listed symptoms that had to do with what seemed to be like paralysis from the waist down and I read that lupus can cut off blood flow to the spinal cord causing temporary paralysis. My dr finally looked at my feet to confirm what I had been telling her. She took the pen and scraped the bottom and side of my foot, and my foot had no response. I still have no feeling in my hips or the outside of my feet. She said it does look like there is nerve damage, they just have to figure out why. I am still waiting to see the neuro. It could be up to four months before they get me in there. I am still on my Vitamin D and meds for high triglycerides, and for my severe pain they have me on ultram, flexeril, and lyrica. these do not help at all! at first they seemed like they could have been taking the stabbing pains away, but now the stabbing pains are back. I wish there was someone out there who could give me some insight on whats' going on with me...I feel like a freak!

     
    Old 10-18-2013, 04:50 AM   #4
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    Re: undiagnosed: dr"s say might be fibro

    I still have another month before my next appt, but have new symptoms over the past few weeks. When I wake in the mornings, I have to take my meds about and hour or two, to make it a little easier to get out of bed when I take my daughter to school. When I first wake up to take the meds,I have noticeably worse pain in the joints in my hands and fingers. It's hard to open and close my hands, as if there were chewing gum or very tight elastic in my joints making it very hard for them to function. I know that sounds weird but that's really the only way i know how to explain it. My should pain is also getting worse. Just really frustrated that it's taking them so long to find out what this is, and that no one truly understands what I am going through

     
    Old 02-17-2014, 08:35 PM   #5
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    Re: undiagnosed: dr"s say might be fibro

    Hi froggirl, I'm so sorry you're going through this I am not going through something nearly as bad as what you are, but I did begin to have these little stings randomly all over my body with muscle soreness that began in my legs then moved up. Within a few days, almost all of my muscles felt so sore. I do not have numbness but occasional hot/icy feelings. It is so frustrating when you just want to figure out what in the heck is happening to you. I feel even just holding up my kindle tablet that my arm is so weak that my bones might break. I'm very scared. Are you still seeing a neurologist? It seems like they would be able to figure this out. You are in my thoughts and I sincerely hope you will recover so you can get back to enjoying life.

     
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    Old 02-17-2014, 08:46 PM   #6
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    Smile Re: undiagnosed: dr"s say might be fibro

    Quote:
    Originally Posted by Sunflowers25 View Post
    Hi froggirl, I'm so sorry you're going through this I am not going through something nearly as bad as what you are, but I did begin to have these little stings randomly all over my body with muscle soreness that began in my legs then moved up. Within a few days, almost all of my muscles felt so sore. I do not have numbness but occasional hot/icy feelings. It is so frustrating when you just want to figure out what in the heck is happening to you. I feel even just holding up my kindle tablet that my arm is so weak that my bones might break. I'm very scared. Are you still seeing a neurologist? It seems like they would be able to figure this out. You are in my thoughts and I sincerely hope you will recover so you can get back to enjoying life.
    I was also having the cold/hot sensations, and my feet and hands are cold all of the time. I was told that it is neuropathy. I have been formally diagnosed with neuropathy, fibro, and degenerative disc disease. My dr is trying to get me in with a pain specialist now. They still have no explanation for my "paralyzed" episodes. I am on Lyrica for the neuropathy and fibro. I have noticed a slight change in the pain, but it isn't anything profound. I guess a little is better than nothing at all ...thank you for responding, and I hope you fiind relief too!

    Last edited by froggirl5296; 02-17-2014 at 08:47 PM.

     
    Old 02-18-2014, 12:06 AM   #7
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    Re: undiagnosed: dr"s say might be fibro

    I would certainly ask your PCP to check you for lupus and RA, and get the written report of your MRI to see if the white spots are lesions or just normal structures. You should have feedback on what that showed. The tests for lupus and RA are blood and urine tests and would be a good start. Lupus and RA are treatable with specific meds, so just treating the pain and calling this fibro isn't adequate without tests to rule out a rheum condition. You should be seeing a rheum for a complete work-up, but PCP could get the basics underway. Good luck-you need some answers after this long!

     
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