I'm new here so be gentle - I'm a 68yr old retired Army/Vietnam Vet. Back on 7 Dec, 2013 I woke up to find that I could not maintain my balance. All that day it appeared as if I were drunk. I still have that problem to this day, I have no dizziness nor do I have vertigo. My VA Neurologist has put me through at least 5 different drugs, physical therapy on a 'Balance Master', CT Scans and a Brain MRI. All of which even though the say 'Abnormality Noted he says they're normal. To compound all of this about two years ago I started having this problem where if I held my head straight and moved only my eyes to the right it would feel as if they were going to snap back center and I'd hear a 'grating' sound in my head. This would not happen if I'd move my eyes to the left. A little over a year ago, in Feb of 2016 I got a headache, it has never gone away. It's not a migraine as I'm not affected by light, noise or other things my wife told me used to affect her when she used to get them. It just varies between a pain level of 3-7 and it's there when I get up, when I go to bed and if I get up during the night it's there. Now for the strangest symptom of all. About 5wks ago I started involuntarily stomping my feet while standing in one spot. I my be washing dishes, shaving, showering or whatever as long as I'm standing in one spot it will happen. It will be like LR-LR-LR-LR like I'm in the Army still marching in place. It may last a second or two or sometimes 15-20 seconds it seems. I've even noticed that sometimes I'll start to turn in place.
The VA has given up on me as of last December so under the Veterans Choice programs they sent me to a civilian neurologist. He was so terrible that he didn't even look at the records I provided because it would have been a waste of his time he said if I hadn't shown up for my appointment and also he said the VA records are worthless because they're nothing but a bunch of run-on sentences. I'm waiting for an appointment with another neurologist sometime next month through the program. In the meantime I've got an appointment with a neurologist who did my back surgery a few years back however I consider this a stopgap measure since he's not in the Veterans Choice program and even though he takes Medicare I really don't want to be stuck with a large bill.
I'd appreciate if anyone could give me some advice.
Chris
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chris1948
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Good morning Chris. First I want to thank you for your service. Greatly appreciated.
My heart goes out to you knowing that you are struggling with many unanswered . I have found two very helpful sites which are, fndhope.org and neurosymptoms.org which have some very good information. I was diagnosed in Janunary and when I started learning more I realized that there are many variations of symptoms and I also realized that there many people that are reaching out to one another to listen and help where they can and you will find that here . What area are you from? Possibly someone would have a recommendation of a doctor that is familiar with FND near you.
Hang in there , remain hopeful and know you are not alone.
You're welcome Kimberly, what scares me is that it's possible that it may be possible that this is the result of my exposure to Agent Orange back in 1969-1970 just like my Ischemic Heart disease is. I'll definitely check out the two sites you mentioned. One other issue I have that I failed to mention above has been diagnosed as 'gait disorder'. I'm 5'11" and in less than a year my gait or stride has been reduced to about 5" between steps. I can't even keep up with my 5'2" wife anymore. As far as where I live, I'm from Copperas Cove, Texas. I'm 60 miles from Waco, about 60 from Austin. My VA Neurologist is in Temple, the Neurologist I'm seeing on the 28th is in Austin. The one I'm waiting for the appointment thru Veterans Choice is in Killeen.
Hi Angela, Wow! You are good - Akathisia lifting the feet as if marching on the spot, I looked at the list of medications and this was staring me in the eyes - Antidepressants Venlafaxine (Effexor I've been taking Venlafaxine for years for back pain, doesn't do any good but I've just never gotten off of it. I get it from my VA Neurologist. I'm going to send the link to him and see what he says, he's so dumb he'll probably not have any idea what I'm talking about since when I told him about my foot stomping he said he'd never heard of it and that was the end of the conversation as far as he was concerned.
It's another angle of possibility. You may well be met with disinterest - patients showing knowledge and initiative are often not well received ! Then there is the 'blame' factor - who wants to admit that a prescribed drug may have caused a movement disorder ?
If you feel you can manage without this and that it might be worthwhile seeing if weaning off it could improve your issues, why not ask about the tapering off dosage ? As to the AO controversy, that's a whole new can of worms isn't it !
Best of luck - do let us know how you get on : ) Angela x
You're right Angela, I'm waiting to see what kind of reply I get from the VA neurologist tomorrow. The Vanlafaxine does nothing for me so I might as well not take it. I'm more concerned about all my other issues than a little back pain. Not saying we have, but possibly have, discovered the name and reason for the 'foot stomping' any ideas on the other symptoms? The balance loss without dizziness/vertigo, the weird sensation and sound in my head when I move my eyes to the right, my year long headache or my gait issues? I know it's a lot but as I've said before I'm desperate. Yes, you're correct. the AO issue is another whole ball of wax. They have added Parkinson's as a presumptive disease as possibly caused by exposure to AO which means if you have Parkinson's and were in areas where it was used you receive compensation for it.
Ah, forgot to mention two things: BPPV for balance loss? It includes vertigo, and there's a simple solution for it.
The other things sounds to me like you need either a chiropractor to look at your neck (the grinding sounds), and the headache and other symptoms sound like a nerve has been pinched in your neck. Can you teach yourself to massage your own neck? It's easier if you start lying down on your back, with your fingers under the back of your head/neck, looking for any dents in your cervical spine. If you find one, gently flick your finger from the dent, outwards, away from the spine. If you find a big bump anywhere, gently flick you fingers in towards the centre of your spine.
Best to see a chiropractor or physiotherapist if you find any serious dents or too many bumps and dents.
I don't have vertigo or dizziness with the balance loss. The VA Neurologist can not get this through his head and continues to put it in my records no matter how many times I tell him that I do not get dizzy or have vertigo. I just lose my balance. Since this started in Dec of '13 I've fallen about six times. I do not move my head just my eyes to the right when hearing the grinding sound. Imagine you're holding your head straight. Now move just your eyes to the right and try to hold them there. Do they stay in that position? Mine don't they want to snap back to center and there is the 'grinding' sound. If I move my eyes to the left they stay to the left and there's no grinding sound. I'm having an MRI of my Cervical and Thoracic spine on the 17th so we'll see if anything shows up. The CT of my Cervical Spine in 2015 the report noted 'SIGNIFICANT ABNORMALITY, ATTN NEEDED' I asked the neurologist and my PCP about it, I got a not a problem, don't worry about it. Brain MRI in Dec - ABNORMALITY, CORRELATE CLINICALLY same answer.
I did EFT for several years, where I would do an eye roll at the end of it, and I discovered then that a lot of past life experiences would interrupt my eyes being able to do a nice even circle, clockwise and/or anti-clockwise. I would have to go back and re-do the circle, taking extra care to look into the corners where my eyes did not want to look at.
There are lots of websites where you can learn EFT (Emotional Freedom Technique). The official site is emofree.com, but my favourite (because it's condensed and explained very simply) is tapintoheaven.com/2eft/efth...
Have you ever tried this before?
Interesting about your balance issues. I went to a neurologist for the first time 10 years ago because I would fall into door posts as I walked through doors. Lots of bruises on my arms lol. It was like i lost my balance or my arms would decide that they really wanted to contact those door posts. This doesn't occur as frequently now as then, but still happens.
When you lose your balance, is it like a muscle somewhere just gives way? or is there a muscle too tight that doesn't know how to move smoothly and therefore doesn't work as expected and gives way?
Always, always, always check for drug side effects and drug interactions. Doctors cannot be relied upon to do that for you. Fortunately, we live in the internet age and drugs.com has an online drug interaction checker. For free. You type in what you're taking and you'll learn all kinds of worthwhile things.
You're so right about that. I've had to tell my VA doctors several times that a new drug they prescribed interacts with another one. Fortunately I'm down to two medications I take and when I get weaned off Venlafaxine it will just be the Ibuprofen which I should quit since it does nothing for this on-going headache.
They love throwing out antidepressants like beads at a Marci Gras parade. And although they help some...they are just buckets of nasty side effects for others. I have never had a good reaction to the seratonin ones if any reaction at all. I finally realized this last year because of my OWN research, that my issue isn't low seratonin - it's low dopamine! I've been taking a supplement called tyrosine and although it's not a cure all (what is?) it's made a big difference. I'd recommend looking into it!
There is a fundamental assumption on the part of most medical folk that seratonin is the ONLY thing that matters with regard to depression. Actual science knows that's not true, but actual science is often absent in common medical practice.
Venlafaxine and Desvenlafaxine both give me massive jaw clamping, very tight muscles and increase my seizures significantly.
Unfortunately you can't just stop taking them. Withdrawal symptoms are quite severe and often include permanent damage from brain jags. Low dose amytriptiline and/or Clonidine can help to protect you from the worst of the withdrawal symptoms. It took me at least a week to recover from them.
There are so many weird symptoms from very rare conditions, no doctor can be expected to know about them all, though they often behave as if they do, and get offended when you discover something new. You will need your doctor's help to get off Venlafaxine. All the best as you work through the minefield that is your body's unique medical issues.
Thanks for the reply Vivienne, I didn't think I could just stop them. I'll have to see what the VA neurologist or my VA PCP decides to do if in fact it is the cause. I'll have to see what kind of a reply I get back from the VA neurologist tomorrow. I'm sure it will be spectacular.
"Akathisia is a voluntary movement of a limb because of an excruciatingly unpleasant sensation that occurs in that limb typically in the evening, most often before going to bed. Moving or shaking the leg immediately relieves this sensation which is so unpleasant that it cannot be ignored. This is my understanding of akathisia. I did not get the sense that this is what he were speaking about by suddenly finding U were marching in place."
This is not the definition of Akathisia the way I read it at Wikipedia or did I read it wrong? I have no unpleasant sensations when this starts. I suddenly just start 'marching in place'. I need to do more research that's for sure because the VA is sure no help.
Hi Chris, as I understood it the marching action can be with or without a preceding restless legs type sensation. The form without restlessness is sometimes, controversially diagnosed as pseudoakathisia, it states. So let's avalook : ncbi.nlm.nih.gov/pubmed/109...
The small steps in Parkinson's are known as 'Festinating gait' and tend to speed up as you go along. You can see examples on youtube. There is also the description of 'Parkinsonism', that encompasses the main symptoms of Parkinson's but from a different cause : brainandspine.org.uk/parkin...
How is your balance when standing with both feet together ? Now try again with your eyes shut ( Romberg test ) - any difference ? ( A good safe place to try this is standing in a doorway so you can grab the frame if you need to ! )
What helps your balance - using a walking stick ? Trailing your hand along a wall ( not leaning for support but just keeping touch contact with it ) ?
I had to wait until I got up this morning to reply since there seemed so much to digest. I'm glad I did. So, there is such a thing as 'pseudoakathisia' because I don't have the pain or tingling in my legs prior to the 'marching in place' starting. Regarding the eye issue, I get my eyes checked at the VA about every 6 months or so since I have the beginnings of Macular Degeneration and Cataracts. I used to have a great eye doctor at the VA but she moved to another clinic. The one I have now is about like my Neurologist, not worth seeing. When I brought my eye issue up to him he replied back with
"I checked the visit notes that you indicated in your last email. The CT of the neck had cervical spinal stenosis, which seems to be the source of the electric shock to the legs. The MRI was negative. The cause of your dizziness issues was still unknown.
It seems that you don't have temporomandibular joint dysfunction(TMJ), sinusitis or anemia (lack of iron) problems. Those problems has reported on internet from other patients. Just as Dr. Moss said, I don't know what is cause of your 'grating' sound. Sorry to say that I have found no answers so far.
Maybe you can try to quit smoking?"
What's screwed up is that I do not nor have I ever mentioned an 'electric shock' to my legs. In another effort to help myself I reached out in an email to my wife's retina specialist (she had a stroke in one of her eyes several years back and sees him for followup). He contacted me the next day and asked a few questions and said the eye movement problem sound more neurological than eye related. At least I got a straight forward answer.
I did your little balance test this morning, I weave with my eyes open and have to catch myself with my eyes closed. Which are the same results as I got when the VA sent me to physical therapy in 2014 for my balance issue. I worked with the Neurocom Balance Master for over 3 months and had a total of 5% positive results from when I started. Yes, I do walk with a cane when we go anywhere and it does help since I always fall off to the right.
The reports are not very accurate ! No electric shocks, nor dizziness - just off balance ! Unfortunately Chris, a lot of diseases do not show clearly on scans until they are more advanced ( with the accompanying worsening symptoms to put up with in the meantime ! ) Not that I'm suggesting that you have any disease but neurologists are aware that a 'clear' scan does not necessarily rule all out.
Sorry to hear about your macular degeneration - my neighbour has this. Glad to hear the stick helps - no outdoor falls is the name of the game ! Amongst other symptoms I have, I go off to the right too and my Romberg test is like yours - I carry a torch if I go out after dark : ) Any muscle pain, stiffness, weakness or co ordination issues ? x
I've got to head out to take care of my orchids and other plants but I'll reply more in depth later and insert some of the CT and MRI results where it says 'abnormality noted' but it gets blown off. I'll also put in the results of my two VNG tests.
I'm back, had a lot more to do than I thought. I've actually fallen about 5 or 6 times the latest being just last month as I was coming out of one of my greenhouses I just lost my balance and went down on the ground. I laid there for a bit and managed to get up. My dad had Macular Degeneration so it's genetic. Anyway, to show you how screwed up things are here are a few test results. Keep in mind that no matter how abnormal the report is my neurologist and/or Primary Care Dr. at the VA blow them off. The first is a VNG test result that I had done in 2014 shortly after I started seeing them.
Test results indicate abnormal tracking and fixation suppression which suggests a central lesion. Fixation suppression and tracking mechanisms share central pathways. Additionally significant down beating vertical nystagmus was noted in the head hanging position which is also indicative of a central lesion.
I'm looking for some other results but anyway they all say 'Abnormalities Noted' and 'ATTN Required' and when I ask about this I get 'Oh, it's nothing.
I did find the list of meds that the VA Neurologist has tried to fix my balance issue - Dilantin, Topamax, Depakote, meclizine, clonazepam none did any good.
I was given Diazepam, briefly for treatment of movement disorder/muscle spasms 4 years ago during 'suspected brain infection' - highly effective, walking was much easier but I slept for hours !
Good morning! Quite the mess isn't it. They, at least the VA, has ruled everything out. If I question whether all my problems my be caused by this or that disease they just poo-poo it and move on. For instance I asked if I may have had a stroke - VA Neuro said 'no way you had a stroke', I ask maybe symptoms of Parkinson's, 'nope you don't have that because your hands don't shake' and so on.
Hopefully with the two neurologist appointments I have coming up, one at the end of this month and one in mid-April some kind of headway towards a diagnosis will be made.
First of all welcome to the board. Its a great group of people, you will not feel judged here nor will you feel unaccepted. As already said many of us have symptoms different or variances of others. Feel free to ask away. I cant really explain it but my arm, hand , or head will start snapping back and forth hard for a period of time when I am going into or already in seizure. Your feet stamping could be something similar. Not really sure, but achalasia is something many of us share. Stay with us, prayerfully many more will comment or provide any kind of help they can. God Bless you, and yes thank you so very much for your service, we are living in a country thats "FREE" because of His grace, and people like you. Cathy
Thanks Cathy, I find that's the problem with all of us, we all have so many different symptoms. In my case it's even worse as I'm trying to put a case together for a VA claim for compensation. So far every time I do it it's been denied because of lack of evidence. I filed a claim for stroke last year that was denied. I've had VNG tests that show a central lesion, I've had CT scans and MRI that the reports show abnormalities, VA neurologist just blows it off. Being that he's a government employee it's next to impossible to do anything against him, believe me, I've already tried and failed. When I had my compensation and pension exam for the stroke claim they sent me to a Chiropractor for it. Now what dose a chiropractor know about stroke? The VA gives him a checklist with questions he's supposed to ask and that's how they determine whether my claim is valid.
Hello, This 60 year old female's first post. I have just seen 2 movement disorder specialists in one week. Both very thorough. FIRST believes it's cervical dystonia and put me on Dopamine prescription with a follow up appt in a month.
SECOND believes it's FDN. Gave me a website and a handshake. Led me to believe this was fixable but nothing I've read leads me to believe that. I don't know who to believe, or what to do.
I had actually forgotten I started this thread. I saw a Movement Disorder specialist back in mid Sept and according to him I have either Orthostatic Myoclonus or Orthostatic Tremor. He came to this conclusion because of the 'foot stomping' videos I gave him. I'm now waiting for an appointment with the Baylor College of Medicine, Parkinson's and Movement Disorder clinic for a 2nd opinion.
Now that I've found what may be one diagnosis (Akathisia) does anyone have an idea about this issue I have where if I'm holding my head straight and move only my eyes to the right there is a noise like a kind of grating in my head and my eyes want to snap back to the center position. This does not happen if I do the same thing and move my eyes to the left. I don't think the VA neurologist believes me on this as he's never offered any possible explanation. The VA eye doctor only suggested I quit smoking which is their fix for everything to include toenail fungus.
Chris1948.
Hi Chris. Fascinated by the eye problems that you explain and the grating sound you detect. You have more tests or scans scheduled this month? Want to connect up the loss of proprioception (body position or balance) and the reduced gait with the nystagmus. You have lot complex stuff going on. Have you had EMG workup? Any exotic blood work or just normal labs?
I've got labs at the VA and an appt with my primary care doctor at the VA on the 16th. On the 17th I have two MRIs, Cervical and Thoracic spine. The 22nd I have an appt with my VA neurologist and the 28th an appt with a neurologist that I've been seeing off and on for about 10yrs. He did my back surgery back in 2007. The most recent blood work I had done was by the one useless neurologist the VA sent me to since the VA one can't figure me out. All of these according to him were normal.
VITAMIN B12
COPPER, SERUM
CERULOPLASMIN
ALPHA-TOCOPHEROL
TSH
ZINC SERUM
FERRITIN
IRON
TIBC
TRANSFERRIN SATURATION
They've never mentioned an EMG test, not sure if it would do any good.
Chris.
Thank you for posting more info.
Have you come across Superior Canal Dehiscence Syndrome? Its a wild shot for some of the complex symptoms you described.
Looks like there is way more to it all though. Sure would want them to do quality MRI studies with detail interpretations particularly of cervical levels.
I know you do not want to hear this but I would ask for another brain / orbits MRI if for no reason other than to have a comparison to previous ones. I have been seen by neuro ophthalmologists which might be a consideration.
Am only a patient on this site. Not even close to being any kind of medical practitioner. Appreciate you sharing all the symptoms and information on unusual ones.
My best to you sir. Sure hope they do not add FND to your list of diagnoses.
Hi Dan, I looked that up and thankfully it really doesn't sound like what I have but thanks for posting it. I'll look at anything if it would help me. I don't think I posted the MRI results. First as I've been saying all along I have balance loss but no dizziness or vertigo. Well here's what they put:
refractory headache and chronic vertigo
And the results:
1. No acute intracranial abnormality. Additional findings suggest
small vessel ischemic changes in the bilateral cerebral
subcortical and deep white matter.
2. Small amount of fluid in the pneumatized right petrous apex.
Mucosal sinus disease in right maxillary and ethmoid sinuses.
See, there's those words in caps - Abnormality - yet so far everyone says "don't worry about it"
I'll see if I can talk the VA into referring me to a neuro ophthalmologists because I'm sure they don't have one where I go but I'll send my Primary Care Dr. a message this morning and ask if there is one there. My goal in all of this searching, asking questions and so on is to hopefully fine a definitive diagnosis from one of my doctors whether it be Neurologist or some other to prove that my sudden onset of all or any of these conditions was caused by my exposure to Agent Orange while in Vietnam in 1969-1970. The VA is adding presumptive conditions where if you have certain diseases or symptoms your claim is automatically granted. Things like diabetes, Parkinson's and quite a few others fall into this category. At the moment I have an 80% disability rating with the VA due to my Ischemic Heart disease which is another of those presumptive diseases.
Chris
Chris.
Again, your post is very detailed and straightforward.
I am not a fan of the findings of fluid, no matter how small, in the petrous apex given other symptoms the radiologist asked to be correlated clinically.
I am also not a fan of the small vessel changes in the bilateral cerebral subcortical and deep white matter as it pertains to your falls although they will tell us our age.
I would keep pressing the AO issue for definitive diagnosis criteria. My prayers for you to get the needle moved from 80% to 100%. You have done your part sir. It is time the world pay attention here and give you peace of mind that you undoubtedly deserve.
Medicine needs to tie all of this together and give you a coherent straightforward explanation just as you have given us of your symptoms.
To better health days in your future. Please keep us advised.
I want to know how the experts take care of you.
Orchids... What a great way to spend part of the day!
Morning Dan, things are progressing nicely with the neuro ophthalmologists that's near Austin. I'm in the process of filling out their new patient paperwork and the doctor I'll be seeing is in the process of getting credentialed with my 'Tricare For Life' tricare.mil/tfl Right now it may be June depending on how long it takes her however if she gets credentialed sooner I'll get in sooner.
I could receive no better news this Saturday. Those docs stay pretty busy so might be a wait. The one I saw here had served in the army and I thought he was first rate. Did a thorough exam and detailed question and answer. Ended up ordering my MRI of orbits which was very informative to me.
Can't wait to hear more from you as case unfolds. Growing optimistic now that you will get answers and action on your case. Good things happening sir. Keep them moving forward.
At least when the one in Austin got my email about my symptoms they didn't blow me off. The other place I sent an email to which is only about 25 miles away never did reply. I surely hope so. It does look good. I hope one of the two neurologist I'm seeing can come up with some kind of diagnosis for my other issues.
Be persistent. These people are trained not to respond. They think we will just go away. Get self to front of line. You come first from now own sir. If any of us can do it, it will be you. Your determination will be great boost for us all. I want to see solution for someone and right now I think that should be you. Great day.
Get to be with my extended family grand daughters tonight. Real treat. Can push each other around on my rolling walker. Keep in touch sir.
Afternoon Dan, actually the other place that is closer is the same hospital that I was sent to their neurologist under the 'Veterans Choice' program, their choice, not mine. After one visit I filed a 2 page complaint against him with the program so now I'll be seeing one affiliated (credentialed) with their program from another hospital. I'm still going to see the one that I'd seen off and on for about 10yrs at the end of this month. For what it's worth if anyone is looking for a - Neuro-Ophthalmologist in their state - nanosweb.org/i4a/member_dir... this is how I found mine.
Sounds like fun Dan, we've got two sons, both in their 40s and both are prison guards. One lives here in town, haven't seen him in a long, long, time, the other lives about 60mi to the south in Austin. We don't see them or their son very often either.
Shoot, the only time they come up is when they want a free meal. Pretty soon though dad is not going to be able to cut the grass and other stuff but neither of them can comprehend that. I'll be here, nothing else to do except play with plants and go to Dr. appointments.
Evening Dan, sorry for the late reply, been busy out in the mini-nursery in my backyard today. I did some research and found a neuro ophthalmologists about 60 miles away from me and another about 25. I emailed them both describing the eye problem and the one that's the furthest replied asking about my insurance. At least that's a start. Hopefully I'll hear something back tomorrow and possibly get an appointment.
I'll keep you and this list informed as things progress. I did get my VA neurologist to send me the different strengths of Venlafaxine to wean myself off of it. Once I'm off of that I'll see how the Akathisia symptoms go.
Anyone ever hear of Clonus? I completely forgot about it. According to my VA Neurologist, after seeing this video, he says that I have it also. What happens with this is that I'll be laying in the recliner or in bed with my legs straight out. If I bend my toes downwards my legs will shake as in the video link. youtu.be/xonOy1cNAX4 (hopefully I won't get in trouble for posting this link).
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since when I told him about my foot stomping he said he'd never heard of it and that was the end of the conversation as far as he was concerned.
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