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Avatar universal

very scared

hi:) im a 30 year old female, and about 7 months ago my life canged so drasticly...i just woke up one day different. so i will give you a list of my symptoms, followed by a list of test results (with no diagnosis, or improvement,) keep in mind this all started in one day, just out of no where.


involuntary movement of my neck- jerking, hard to turn it, feels very ridgid. kinda pulls to the left.

shaking in my arms and legs, more when i try to hold my legs out in front of me unsupported.

painless little twitches in all my muscle, but i believe the first one were in my tummy, before all this started.

so the test results i have are;

low b12 (212)  its now around 550, i have been taking a b12 vitamin daily for 6 months

low folic acid i now take a vitamin for this

low thyroid (i take synthroid now)

had a ceruloplasmin, free 24 hour urine copper test, they suspected i had Wilson's Disease..it was all a form of negative.

otherwise, no one can tell me what wrong with me, im terrified..im a mommy of 3 amazing little kids :) they mean the world to me..im not being who i was before this, im letting them down due to being so worried, and not feeling well. if anyone has ANY type of suggestion im all ears, or in this case all eyes ;)


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Avatar universal
No Neuro consult?
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Avatar universal
yes, he said he thought it was Wilson's Disease, but tests confimed that it was not..now he is just at a loss, said he would have bet his career that i did have WD.. im searching for answers anywhere at this point.
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Avatar universal
Any imaging of your cervical spine or brain done?  i.e. MRI?

Trying to figure out if this is coming from your spine or if this is something endo.  
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Avatar universal
i havent, its ordered but havent recieved the appointment yet. i like you wonder if its damage to nerves from my cervical spine, its kinda strange how it all started in one day, leads me to believe it is my spine? does that sound plausable? also, there could be a couple of things wrong and my doctors a putting them all in one symptoms basket, and then missing the bigger picture.
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btw, thank you so much for taking the time to read and answer my question :)
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Avatar universal
Thinking it could be endo too r/t to your low b12, low folic acid and the thyroid issue, but your cervical spine should be imaged.  I have one disc, C4-C5 that has slipped and have had some of the same symptoms you are experiencing.  

What MRI is ordered, brain or cerivcal spine?  
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Avatar universal
No problem. I enjoy doing this in my spare time.  If I can help someone, that's great.  
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Avatar universal
both, with and without contrast. so your symptoms were like mine? would it be rude to ask how it started and the course it has taken, if you are now better? im sorry, im really hoping that there is a fix for me.
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Avatar universal
No problem telling you if you don't mind reading a book.  :))

My symptoms started abruptly.  One day I woke up with dizziness, vertigo and problems focusing my eyes.  I had been taking some medication for a worm infection and thought that was causing the problems so I stopped taking the medication, however the symptoms continued.  Finally, I went to the doctor and she said "Oh, we see this all the time during the summer months; we can cure you."  Yeah, right.  Well, the symptoms seemed to subside after taking Betahistine for about two weeks.  Then, it all started again.  Now, it started to affect my balance.  I felt like I was walking on a trampoline.  I went back to that doctor, who looked totally baffled about what was going on with me.  I tried this med and that med and nothing really did anything for my symptoms.  I started to experience overall twitching, floaters, weak and shaking muscles and fatigue to add to what I was experiencing already.  After seeing two Ophthalmologists, two ENT Specialists, three Neurologists, two Neurosurgeons and three GPs I received different diagnoses:  Psych issues, Meniere's, Unresolved Labyrinthitis, Allergies, Possible Chiari 0 and "I am not sure what you have."  Yeah, love the "nutball" diagnosis.  

So fast forward to now.  Well, still have some issues with the floaters, fatigued alot, still have the overall twitching (sometimes I can watch my toes and arms twitch away), migraines, neck/back pain, feels like I am on a boat and I have to maintain my balance even when I am sitting.  The only things abnormal as far as testing goes:  low iron levels, elevated creatinine, C4-C5 herniation, low cerebellar tonsils in the back of my brain and a positive lab for CMV (virus).    

So with that being said.  I have no definite diagnosis to this day.  I really felt like none of the diagnoses that were given to me fix my situation to a "tee."  I am better in some sense but not my 100% self before two years ago.  I would say I am at 60% better.  I guess it could be worse.  I think I have had about 40 symptoms, but alot of them were transient thank God.  Try telling a physician you have had "40" symptoms and then watch him/her tell you "you're nuts."  

I work, but limit my activity because the next day I will "pay" for overexerting myself.  I don't see any physicians at this time because of all the bs I received earlier.  
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Avatar universal
after my second visit to my GP, she tried to put me on anti axiety meds, lol, of course im anxious, something is wrong with me!! i said no, im not a fan of the band aid fixes, dont treat my symptoms, find the cause. i wish that you were back at 100%. gosh, you really have had a long hard road from this..doctors are generally not interested in finding out hats wrong, i think anyway. if its not an easy fix, like, oh..its the flu, then they push you out and on to another doctor for the cycle to continue. this does not in any way sound like ALS, right? pretty afraid of that answer. more importantly my daughter has hashimotos disease, and i want to make sure she gets the proper treatment, and never runs into these types of problems. i honestly cant thank you enough for all your imput, and just having someone to run things by.
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Avatar universal
Doesn't sounds like ALS to me at all.  BTW:  I was checked for that too.  

Yeah, don't feed into that "Anxiety/Depression" bs.  Most physicians just want to "bandaid" the situation and not really find out/investigate for the cause.  

I work in the medical field and have seen so much bs in regards to physicians.  

I wish I could figure out what the hell is wrong with me.  
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i wish you could too..if doctors had your compassion, we would all be healthier and happier :) hold out hope that you will know at some point whats wrong, that you will feel better.
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Avatar universal
Hi, I also woke up one morning unable to move me neck, i had muscle spasms going down arm and leg, this was 7 weeks ago now, since then i have seen 3 doctors and been to hospital emergency, finally ending up with a ct scan and mri, my symptoms have gotten worse, i have constant muscle spasms, pins and needles in my hand,hands constantly shaking, really bad headaches. am now waiting to see a neurosurgeon as the results of my mri have said degenerative disc disease, also bulging discs in the cervical spine which are pretty much blocking of my nerve.i was told by 3 different doctors i had just pulled a muscle, of you go, you'll be fine in a few weeks.
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Avatar universal
Hi, I also woke up one morning unable to move me neck, i had muscle spasms going down arm and leg, this was 7 weeks ago now, since then i have seen 3 doctors and been to hospital emergency, finally ending up with a ct scan and mri, my symptoms have gotten worse, i have constant muscle spasms, pins and needles in my hand,hands constantly shaking, really bad headaches. am now waiting to see a neurosurgeon as the results of my mri have said degenerative disc disease, also bulging discs in the cervical spine which are pretty much blocking of my nerve I also have an underactive thyroid, and have been told by a chiropractor that part of the spine c5/6 c6/7 controls the thyroid.i was told by 3 different doctors i had just pulled a muscle, of you go, you'll be fine in a few weeks.
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Avatar universal
i know this going to sound awful, but i am so glad someone else knows what im talking about...please email me directly at ***@****
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Avatar universal
That's terrible.  Totally misdiagnosed.  I hope you get the proper treatment that you need.  Yeah, I was told my abnormal cervical spine situation was NOT a big deal and that most of the world's population has this.  Till the day I believe all my problems are stemming from my c-spine.  Right now it is bearable.  I will have to continue to find someone who will address my issues.  

Keep me updated.  
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Avatar universal
That's why I mentioned having your c-spine imaged.  I think perhaps your problems are coming from your spine.  I have had symptoms just like yours but they come and go.  The only symptom we have in common right now is the muscle twitching.  C-spine symptoms can vary from person to person.  

I believe all these "weird" symptoms I have are coming from my c-spine, but unfortunately I have to find a physician who is willing to further investigate and/or treat me.  I have a C4-C5 herniation with a straightening cervical spine.  

BTW:  you can't post e-mails in the public forum.  I think you have to PM that person to give your e-mail address.  

BTW:  Thank you for your kind words about my compassion.  :))

Bonjour!!!
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Avatar universal
so i think i may just drive myself to the ER, tell them whats happening, and hope they will atleast take a look, seems my health care has been far too relaxed..lol i was wondering if any of you had an accident preceeding your current situation? like a car wreck, or by chance the flu or mono?
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Avatar universal
OMG yes, I was sick with a worm infection I got from one of my stepkids and then an viral infection.  Then, everything went downhill from there.  

I was in a car accident years ago; 22 years ago; a "fender-bender."  Four years ago I fell on some ice and banged the back of my head well; saw "stars."  Didn't get any imaging for that because I felt ok after 1-2 hours.    
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Avatar universal
hmmm. well then, it all started for me after a terrible bout with influenza B, and mono. i have never been the same after that..my doctor just said he wanted me tested for a gluten allergy?? i have really no gi symptoms, so im confused? i also have low blood sugar, which is odd...any way, i was in a wreck about a year ago where i tore both cervical muscles, so im pretty sure my neck is messed up from that, either way, something is wrong and im taking a stand against my doctors..lol im so tired of hearing that i look healthy, im gonna snap out on one of them! also, it seems that once u have one auto immune disease, that all just pile on in..so sad. i think my doctor is thinking gluten ataxia, but he is wrong. jerk..hahaha, ok, im done ranting now :)
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Avatar universal
Well, no harm in having him test you for that, but since you have no GI symptoms I highly doubt that is it.  But hey when you are not feeling well you get to the point where you'll get tested for anything.  
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Avatar universal
yeah, i would do any test in order to know what is wrong and get it fixed..i called back and spoke with his nurse who says the reason he wants to do the scope is because i tested positive for the antibodies for celiac? think someone would have told me that a bit sooner.
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Avatar universal
Yes, someone should have told you that sooner you would think.  
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