After 3 months of symptoms and nothing showing up on testing my neuro set me free and suggested I get a 2nd opinion!
My symptoms started with tingly right foot and vertigo...now I have not been symptom free in 3 months and I have...tingliness in both legs, vertigo (some days worse than others), heavy legs, muscle twitches and tingles, the feeling of vibrations under my feet, tiredness, pain in my butt, the feeling that my legs are going to just "give out" etc...all sensory type stuff.
I originally went to the doc on Jan 11th and he told me I was showing sign of MS. All blood work has been run and is clear...except Vitamin D. I have now been on that since Jan., got off for two weeks just to have it abnormal again. He ran a brain MRI on 2/8 on a 1.5 T machine w/out contrast...it was normal.
Then on 2/19 MRI of C-Spine w/out contrast on 1.5 T...normal
3/8 MRI of T-Spine w/out contrast on 1.5 T...normal
On 2/4 I had a VEP test...normal
UGH!!! I feel like there has to be answers out there!
So...my neuro said he thinks I have anxiety issues (he told me this before so I made a pyshc apt and my pyshc DOES NOT feel that I have anxiety issues leading to this).
Yesterday my neuro basically in a nut shell picked all the symptoms apart and said that they do not all go together. He is treating the vertigo with PT and suggests the "neuro like" symptoms are caused from anxiety. He said the occasional fatigue must be because of something else.
I agree that I do have SOME anxiety issues..but all isolated...like I don't like to fly...things like that. i don't feel that I have anxiety on a daily basis. I feel as though I always have been a tad of a nervous neelie but not anything extreme...like I said all isolated.
I will also give my neuro the fact that things got worse after being told that I may have MS. But I don't feel that made the symptoms worse. I do think I got scared though.
HELP!!! Have any of you EVER heard of anxiety created neurological symptoms AND if so how does it explain my first symptoms? OR another theory for my primary care doc is that it is MS and too early to show on scans...
of course you are experiencing anxiety because you have freaky, undiagnosed neurological symptoms going on which would scare anyone for goodness sake!
your experience sounds nearly identical to mine. i can't tell you how many times i was told my symptoms were the result of stress and/or anxiety and sent on my way with a prescription for anti-depressants or even valium. i know anxiety can do a number on people, but i knew in my gut that there was more going on with me than that.
i am currently undiagnosed, but after seeing over 20 doctors, i have finally found practitioners who are taking me seriously. go for the second opinion, and maybe even find a rheumatologist since there are autoimmune diseases that can also cause neuro symptoms.
i am also in northern CA. if you want to PM me, feel free.
I am exactly in the same boat....I have been dealing with this since 2008 and hear the same thing....you are depressed/anxious/or have conversion disorder. Like you, my depression or axiousness are isolated or a normal response. I actually went to see a psychiatrist for the opininion on the conversion disorder to have that formally ruled out. This whole experience has, at times, literally driven me to the loony bin. Currently, I am dealing with another "relapse" and optic neuritis. I was even told recently when I was in the hospital that the optic neuritis brought on my other symptoms. I just felt deflated inside. I have a MS "diagnosis" by every other doctor I have seen...except a neuro..They always seem to start off by saying, "...well after reviewing your past neuro visits.." or "...and how many doctors are you going to see?". I love that one...I just want to ask..okay, if you were me would you just accept this?? Ummm...no. I am grateful that my family dr is at least prescribing some meds for the nerve pain I experience and has a listening ear. These posts have saved me from just giving up. I read people's experiences everyday...it is part of my morning routine now. It is very helpful to know you are not alone and that you have a whole community here that has been there and done that in some capacity, anyway. I wish you the best of luck; hang in there; and YOU listen to your body!
i thought by taking a lumbar punture they can say if you have ms the nero guy takes brain scan so i thought that helps to . there is alot of things people have the same symtoms of. the doctors i go to say stay of the enternet and quit looking things up. it sorta helps some times. so i hope when you go to the doctors and they say you dont have ms that we will stop looking for a reason to think we have it . maybe in time the tingling will go away and things will be like we were. .
Wobbly said it. It's difficult, but sometimes, you just have to let time show others what you already know yourself. You've been cleared of psychological involvement by your psych, and your neuro dismissed that conclusions--that means you definitely need to take him up on his offer for you to get a second opinion. You don't mention your neuro exam--is it normal or abnormal?
LPs do not definitively exclude or include MS, and neither do MRI results. MS is a clinical diagnosis, above all, meaning that the diagnosis does not require positive findings on either MRI or LP--a confident neurologist could dx it based on an abnormal neurological exam alone.
The Internet is not the layperson bogeyman that some doctors make it out to be, and this forum is a prime example. The information here is excellent and accurate, far more than most patients who come here have received from their doctors. The support is invaluable, for those in process and those already diagnosed. I know that for some doctors, it's no fun not to have all the esoterica to themselves any more, but plenty of us are fully capable of sifting, digesting, and discerning what's relevant about the information we find on the Internet. Since they often don't bother to do that for us, we do it for ourselves.
I too am in limboland. It has been 2 rheumatologists, 1 cardiologist, 1 endocrinologist, and 2 neuro's. I am currently waiting on Neuro #2 to follow up from my first ever MRI in Feb 2010. Yes, at least 4 years of symptoms and no MRI !!! I had to switch GP's because my old one was not willing to send me to anymore specialists. She too said it was likely stress and atypical migraines.
I never knew stress could make your legs sieze up so you can barely walk, or give you bladder urgency and spasms, or cause your hand to seize up, or your leg to give out... And of course we are stressed! We are trying to live a normal life and have a body that is completely unreliable and may cause us problems at any moment.
So I completely understand how frustrated you must be. I have learned here that being patient and persistent will get me the answers I seek. Sometimes it is sooo hard to keep fighting against everyone, including the dr's, to find the answers but it is important to continue on if the explanation doesn't fit.
So far in my journey I have been told I have Fibromyalgia (rheum #1) and I don't (Rheum#2), I have a sinus infection (xray showed I didn't), I have a bladder infection (tests were negative). You get the picture - the medical community does not always get it right so a second opinion is essential.
Take care and know there are a bunch of us here in limboland cheering you on! Anna
My neuro said he saw "no neurological symptoms" in his exam. Also, my MRI's are totally clean. Can this even be possible? How were your original MRI's? And neuro findings? Was there anything your neuro could see? Hoe long were your symptoms present?
I just don't know. I would love to think this is anxiety but feel like there would have to be a whole lot of other anxiety symptoms before a full blown neruo attack!! See what I mean?
Also, do your MS symptoms vary every day? Do you have symptoms daily? I do. SO that's the other reason that my Dr doesn't think it can be MS. He says my symptoms don't sound all that much like someone with ms.
It is so crazy how frustrating all this can be. i recently talked with someone with MS and she just kept saying, "tell yourself you will be ok...over and over." That is actually what I have been trying to do.
I feel the same way as you do. I want to ask my neuro to spend 24hrs in my shoes then see if he would except his DX of anxiety. Like I said I feel like I would have other issues first!!!
I just dream of the day this is all over...I want to wake up and feel normal!
Take care and I look forward to hearing how things are going for you :o)
I know that the LP would be able to rule in or out MS but have heard this can take time to show up as well. I am very confuesed on all of this too. Apparently everything can take time to show...but I am not too sure of that either. HA HA!
My neuro doesn't explain anything to me so any info I have is off of the internet.....?
To answer your ? about the neuro exam, my neuro said he finds nothing neurologically wrong. So, I asked why do I have all of these funny, strange sensations...the stuff I feel is so weird and indescribable. (sory terrible speller).
Yes my doc wants me off the internet but how do docs really know how any of this feels??? I mean, they don't experience it. I feel "normal" when I ask questions on here. Like people understand! It is very helpful :o)
Thanks for your response and yes I am going for a 2nd opinion.
WOW have you been thru a lot! I am scared that I will be in the same boat and believe me when I say I lack patience. ha ha! I just wish for answers and that is why the anxiety thing is so comforting. And the fact that each and every day is so different for me...it makes me wonder!
I just don't know. Yes, I am going to have a 2nd opinion but I am also going outside of my medical carrier and having a self pay apt with a neuro. I am excited about that. I hope it will provide some answers. I want to try out other docs anyway as I really need out of Kaiser and I want to make the switch come Oct when it is open enrollment time :o)
Ugh, limboland! I'm sorry you're going through this. I hope you get some answers soon :( One quick observation - from what I've read, anxiety-related sensory symptoms typically show up in the hands. Seems like everything's only in your legs. Just seems a little odd, if this is all from anxiety... But I don't know!
The connection between anxiety and physical symptoms is really pretty poorly understood. Now, I am a big believer in anxiety's ability to mess up your body and cause symptoms. However, it also seems to me that the currently accepted ideas of anxiety are based WAY too much on old-school psychology, and way too little on neuroscience. It drives me crazy - some of this STILL-accepted somatization stuff is pure Freud! Ugh! Haha, don't get me started, I could rant for pages and pages and paaaages... :P Currently - as far as I know, anyway, from the papers I've read - there is still no proposed chemical mechanism (PROPOSED! as in, not even a hypothesis) for how somatization works.
That said, the research connecting anxiety to a certain set of symptoms (numbness, dizziness, etc) is pretty solid. I mean - the correlation is solid, anyway. But what does this mean? One answer - the anxiety is causing the sx (somatization). OR, the brain is a little messed up, resulting in many separate sx including anxiety, numbness, dizziness, etc. OR, people get anxious as a result of their unexplained sx. OR, the experiments are flawed due to bias, the researchers' expectation that anxiety will cause physical sx - IMO this is very likely to a small degree, but I really do think that some form of the anxiety/physical symptom connection exists - I just don't think we understand it near well enough at this time.
One thing I want to bring up is hyperventilation syndrome. I like this idea because it at least describes the mechanism that turns anxiety into numbness and lightheadedness and all that. It might be something to look into? Just, you know, to cover all the bases. Oh man, I don't want to say that any of this is what's up with you - or even that it matches your sx particularly well. I'm really just throwing out general ideas.
I'm a big believer in the connection between anxiety and weird symptoms because a couple of years back I got PTSD - oh man, emotionally-speaking, I was a wreck - and at the same time, I developed pretty major physical issues: sleep disturbances, tremor, dizziness, and weakness/clumsiness. But - I wasn't just your average generally anxious person. I was walking around on a constant adrenaline rush (a totally crazy experience) and crouching and running if I heard a car door slam - I mean, I was wound TIGHT. Still, I guess long-term day-to-day anxiety could maybe take its toll in the same way, if it went on long enough... Oh boy, I don't know!
Haha, I'm starting to talk in circles, so I think I better stop writing :P I wish I could give you a more coherent response! Maybe sometime when it's not so late :)
Oh, one last point, that I've learned from my own experiences - it can be a really good idea to pick apart your symptoms, try to figure out what might be anxiety, what almost certainly is anxiety, and then everything else that's left over. I feel like, if you're dealing with unexplained medical issues, of course anxiety is a problem! So, then if the anxiety is causing sx, then it's only going to cloud the picture... making everything more confusing. I think doctors tend to forget that you can have multiple issues going on at once - sometimes it can help to remind them.
Oh man, I'm sorry - soooo sleepy! I better stop typing! Spare you more rambling :P
I'm really sorry about all the frustration, and the waiting and not knowing what is wrong. I hope you keep going after answers, and I hope you get them too, and soon! I'll be rooting for you. Good luck :)
No one is taking me seriously ,they don't know anything when it comes to this they just order blood test and specialist , it is driving me crazy, waiting for MRI is even crazier , I don't want to do any thing until I get what I have, my life is scary every day. Waiting what symptoms are going to show up today. I'm I going to be dezzy, or I'm I going to have heart pulpation or any numbness. Or any other symptoms, and i have a lot for 8 months non stop.Just want to know what I have. Very sad.
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