Discussions By Condition: Medical Stories

who should i see now?

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • April 15, 2011
  • 08:03 PM

I will try to make this brief, but i really need some help. I have had wierd issues since about 99. diagnosis with severe vertigo. Then told i have menieres dieasese. had numerous inner ear surgeries.CT and mri at this time. never got any better. More ringing of ear and etc. Then in 2001 i started feeling like i couldnt remember much and later got diagnoised with add. It has gotten worse over the years. Started having leg cramps .2002 started having bad right eye pain, and miranes. again i got more mri and ct scans which showed nothing. by 2007 started feeling generalized pain and weekness. i am very tall. legs often fall asleep and hurt. But everyone blew it of since i am tall and work on my feet.2008-9 i started having extreme muscle cramps that lasted for hours. again more neurologist more labs. nerve conduction test, doppler us , etc. My CPK got really elevated. They gave me klonopin to help. which it did. and cpk went down. I felt at this point something was missing and i was only being treated for symptoms not cause. i stopped taking Klonopin ( i hate taking meds) and of course they came back. but this time i would stand up and fall over as i couldnt control my feet. like drop foot. my toes began to tick , i would have random muscles ( mainly in legs) contract in a ticking manner for over 24 hours. again back to pcp. Again more labs ct and etc. THis time i recieved baclofen. it progressed to point i was unaware of my numbness in feet, and would take shoes off to notice my toes ticking.. maybe just one or two at a time .. and i didnt even know. Again back to pcp. ( my pcp really feels i have MS ) My pcp then sends me to another neurologist who speciality is ms. he does lab work. i return in 3 weeks for nerve conduction and other tests. I did not know my lab work at this time. THey do the nerve test. it was soo painful. they only did my right side. after test over i am told my b12 ( 3 weeks prior) is 211. IN that 3 week period of time my legs felt they were on fire, i could barely stand or walk. i had a obvious limp. my vertigo was out of control , like my eyes were crossing. more headaches, right eye always red. Anywhoo... he started me on oral b12 1000mcg every day. since then i have been in hospital for PAC and PVC and had to wear heart monitor for 30 days. i constantly am tachycardic but my bp is low. seeing a cardiologist now. more echo stress test etc. Then the next week back to hospital . i blacked out and woke to not be able to move my right side well ( only arm and leg affected.) got a ct of my head to rule out stroke. thanks goodness no stroke. i am feeling better but continously have chronic aweful pain on top of my other issues. i finally return to neurologist ( very hard to get an appointment. I am grateful he found my b 12 def, and during this time i found the book Could it be B12? i never learned so much. my whole life is an example of b12 def, and not one doctor had ever checked me for it. Well now i have had tremors ( contstantly and my pain is crazy). My toes dont tick as much, but my feet go numb doing just about anything. My nerve pain is serious. I cannot drive as my feet are really asleep . i am having more good days now. But if i do much of anything i pay for it. My body suffers. i am currently at level 409 b12, and i went to neurologist and discussed new options, like what would it hurt to give me im injections to overload me? i came with many questions as i am very impacted by this , i am a mom and wife, havent worked in months and its hard to do anything. i need help. He was nice, but got offensive after i asked if my levels were 211 three weeeks prior did i need nerve conduction and if so, could it be causing my bad pain and numbness in right arm? ( after all if b12 makes mylein sheath and my levels are low, sticking needles up and down my right side and shocking them seemed like it would open more areas for pain.) i was not upset just hoping my new issues were related to something not just new and possible permanent. He answered by not looking at me and saying i hear that all the time but we needed to know if you had a neuropathy. people ask that all the time. It doesnt cause problems. (in my mind i was thinking Fine i quess, but if people ask all the time could it be people are having more pain with this. its obvious i have nerve issues as i cannot feel feet or walk right and my toes wont stop ticking. Just my thought. does anyone else have expierence with this?or thoughts?) He then asked me if there is any bi polar in my family as i seem maniac! totally crushed my spirits. i dont want to be crazy of be called crazy. But mainly i felt he dismissed me by calling me maniac. Please not husband was in room and i wasnt being aggressive. I even told the doctor i am not trying to be rude i am not mad. i am grateful you tested me. Its apparent now i have had issues for years all as a result of this. Needless to say he was ready to get out of room and i couldnt really ask too many more questions as i didnt want him to think i am aggressive manic person. BUt this is my life. it is being stolen from me and i have to ask questions i have to be my own advocate. I told him about book which i brought with me and told him this and that and etc. He told me i need to stop reading medical books and get a drama or love story novel. seriously? i said well if you think i am maniac could it be due to b12? could my hand tremors and weakness be to b12? he said no. i must have something else. He then asked if i had any family member with Wilsons disease? i dont. when i look up symptoms of wilsons disease its liver involvement ( all my liver levels perfect..) and jaundice which leads to liver failure but causes personality changes and hand tremors. he think my hand tremors are due to my mania? he even asked my husband if i am hyper like this all the time?! Yes i may have been nervous and had a lot of questions but i had to beg to get an appointment and i had waited 2 hours to see him. At this point my question is, b12 can cause hand tremors? and getting im b12 is a good idea right? also should i look for a hematologist to treat my b12? i am glad he found it, but doesnt feel my other symptoms are related to b12 , although in every textbook they are? am i missing something? are there doctors that are specialist of b12? any suggestion welcome. i am just ready to get my life back before its too late. i am only 30 years old. i cannot live like this. i need help, suggestions, whatever....thanks so much..

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