Introduction and questions

My name is Chris and I'm 68yrs old. I'm a 22yr Army and Vietnam Vet. My story is below.

I'll list all these symptoms in the order they happened

I woke up the morning of 7 Dec, 2013 unable to keep my balance. No dizziness, no vertigo, I just can't keep my balance and it continues to this day. I've fallen about 6 times since this started.

Back in Feb of last year more odd symptoms started. For one if I hold my head straight and just move my eyes to the right I'll 'hear' a noise in my head and my eyes want to snap back to center. This doesn't happen if I move just my eyes to the left. I have tinnitus in my right ear but when this happens the pitch doesn't seem to change. Also around the same time I got a headache which has continued 24/7 until this day. The pain level varies from maybe a 3 to a 7 or so.

Around the beginning of last month another symptom crept up. I'll be standing still and suddenly I will involuntarily start stamping my feet as if I'm marching in place. This may last for a few seconds to maybe 15 or 20 seconds.

So far I've seen a neurologist at the VA and a civilian neurologist. Neither can figure me out. I have appointments with two more neurologists one at the end of this month and one the middle of next month. I also have an upcoming appointment in June with a neuro ophthalmologists.

The VA neurologist has tried at least five different medications for the balance loss, I've had VNG tests (show possibility of a central lesion), brain MRI, I've had physical therapy on a machine called a 'balance master' none of which have done any good. The brain MRI showed an abnormality but when I asked either of the neurologists I've seen so far both say nothing to worry about.

I also have what they've said is a 'gait disorder'. I'm 5'11" but my wife now takes bigger steps than I do.

I'm posting here just in case anyone recognizes any of these as PSP symptoms. I'm just reaching out trying to find some answers since all these issues are driving me crazy.

Thanks

Chris

17 Replies

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  • Dear Chris , I am wondering if maybe you shouold go to Mayo clinic. Because Mayo is a research facility, they may be able to find things that concur with other problems not yet known by the regular populace. My husbands gaze was vertically diminished and he had no pain when turning his eyes to the side, or up or down for that matter. The alien limb which si sort of what the foot stomping sounds like is not real definitive to PSP though my hsband did have a difficult time taking normal sized steps....and infact his right foot did drag somewhat.

    I would definitely have the central brain lesion looked at. In fact, if you know where the lesion is, you can research it on line what areas of the brain are might potentially be affected. Then start asking question to the doctors....I do this could it be from the lesion which is resting on this area of the brain ...Do you think the lesion which is in this area of the brain would create alien limb syndrome " etc... you must be your own advocate Chris (as you are now being here on this site) I told my husbands doctor that it might be PSP. He checked and bam.....it was!

    Keep looking....in my experience your experience does not sound like PSP Goodluck man....

    AVB

  • Thanks for the reply. I just don't know what my problem is. It's really depressing having all these different symptoms and no doctor can actually come out and give you a diagnosis. The central lesion was mentioned in the result of one of my VNG tests.

  • Agree with AVB. Mayo Clinic could be more 'sympathic' of all your symptoms.

    Alien limb ie. marching on spot, is indicated in CBD diagnosis. All suggests you are on right track in targeting neurological and brain disturbance whatever may be the cause.

    Yes! Keep being proactive and researching. There are good neurologists out there! You just have to find one! Some on this site have had contact with Mayo. Who did they see? Who are the specialists in recent video posts?

    Good luck in your search!

    Jen

  • Thanks Jen, I'm there in another tab. Do you just research symptoms there? You don't actually contact doctors correct? I'd recently also looked up Akathisia which has a 'marching in place' symptom also. Looking further I found it could be caused by one of the medications I've been taking for years, Venlafaxine, which I now have my VA neurologist weaning me off of.

  • Hi Chris - best wishes for a treatment

    PSP includes smaller step sizes - another main indicator is inability to move eyes down or up (vertical gaze) - my dad had this disease - I don't think he had tinnitus or the stamping-feet problem - he was hard of hearing in one ear (thanks to tanks firing in hearing range, he was ex Army too) but in the last 2 years or so of his life, his hearing actually became much better

  • Hi Sammy, thanks for the reply. Frankly I don't know what disease/condition I have. All I do know is that I have all these symptoms, have tried all kinds of drugs and gone through various tests with the only results being 'Abnormality Noted' in my VA records (this includes my CT scans and brain MRI). Even all my blood work is normal according to the VA and the one neurologist under the Veterans Choice program whom I fired. He didn't look at any of my records because according to him it would have been a waste of his time if I didn't show up for my appointment. Anyway, I go on the 28th of this month to see the neurologist/neurosurgeon who did my back surgery in '07 and then have an appointment with another Veterans Choice neurologist on the 12th of April. Maybe between the two something will get figured out.

  • I wish you the best of luck - one thing I just thought of - please check with your doctor for NPH (normal pressure hydrocephalus) - it's brain pressure caused by excess fluids - it's not dementia itself, it just causes dementia-like symptoms - this can be checked by doing a spinal tap - however, in case there it IS a PSP-like disease, a spinal tap (or any surgery) will only aggravate it - so this needs option to be carefully considered - but if it works, then most of the dementia like symptoms will be gone quickly - best wishes

  • Thanks Sammy I'll ask. Though luckily I don't seem to have any symptoms of dementia, at least I don't think I do.

  • Welcome to our family, Chris. The suggestion to go to Mayo is good but our experience with the Mayo clinic in Jacksonville, FL was not good. I would suggest searching for Parkinson's Centers of Excellence or Movement Disorder Clinics. Best wishes for success in your search. It usually takes time and trial and error for the medical profession to come to a conclusion which is very frustrating.

    marph

  • Hi Marph, I had actually thought a while back that I may have the beginnings of Parkinson's since some of the symptoms were similar. The other reason is that it's been decided that:

    Veterans who develop Parkinson's disease and were exposed to Agent Orange or other herbicides during military service do not have to prove a connection between their disease and service to be eligible to receive VA health care and disability compensation.

    And I was definitely exposed to Agent Orange while in Vietnam. When I asked my VA neurologist about this awhile back he outright said 'you don't have Parkinson's, your hands don't tremble'. I'll check out the Parkinson's site you mentioned and hopefully come up with something.

  • As I understand Parkinson's, about 20% do not have the tremors. My husband has PSP and sees the atypical Parkinson's specialist at the Center for Movement Disorders at U of Florida. Good luck with your search. I think most of us here had trouble getting a diagnosis--sometimes taking years to get one.

    marph

  • That's what I understood also. Hopefully by the end of April I'll have some kind of answers.

  • Hi Chris. Sorry you find yourself in this situation but this is a great forum with people who have lots of experience and knowledge. It may not be relevant but my husband's condition started when he had an MRI Scan done to look into his increasingly uncomfortable tinnitus. It was discovered he had an Acoustic Neuroma which is a non-malignant brain tumour growing on the balance nerve. This resulted in poor balance that got increasingly worse but after laser treatment the problem was no better. Eventually he was diagnosed with CBD, which is similar to PSP, over and above the tumour. One of his early symptoms was that his eyes lost the ability to track vertically and eventually horizontally. This may not apply to you at all but it may he worth asking the question. Good luck. Margaret

  • Hi Margaret, maybe it would be more beneficial to post test results of what I've had done so far. That way you and the others here that have been so gracious to offer suggestions can look and see if anything is familiar to them. For instance my first VNG test which was done shortly after my balance loss started:

    First VNG in Feb '14

    A: 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.

    2nd VNG July '16

    1. VNG Results-

    -Failure of fixation suppression indicates a central finding, often involving

    the cerebellar flocculus or the surrounding structures

    My brain MRI on 1 Dec '16

    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.

    Primary Diagnostic Code: ABNORMALITY, CORRELATE CLINICALLY

    I had a CT of my cervical spine done in May of '15. One oddity noted was:

    2. Nonvisualization of the left lobe of the thyroid, possibly

    absent. Tiny hypodensities in the right lobe could be further

    evaluated by ultrasound.

    Primary Diagnostic Code: SIGNIFICANT ABNORMALITY, ATTN NEEDED

    I asked my PCP at the VA about the portion of my thyroid missing and she asked me if I'd had surgery to have part of it removed. I told her no, and I think I would have been aware if I had and that was the end of that conversation.

    Anyway, if anything in the above looks familiar to anyone please let me know so I can start asking more questions of my doctors.

    Chris

  • Chris,

    Thank you for your service in the U.S. military, sir!

    One potentially very important side note was omitted from your post.

    I apologize for asking, but the answer =could= be crucial to fuller understanding from our side of the keyboard: Did you require your wife's =hands-on= assistance in writing, use of the keyboard typing device, and sending your post to its online destination?

    If not, then I think we can safely assume that you have some years of good living ahead <smile>, at least on the issue of PSP and other conditions in the Parkinsonism family. Three or four years out with PSP, somebody else would have had to do your typing and remembering of facts!

    However, with your growing list of symptoms, you are doing the right thing in seeking out additional help from clinicians and other medical professionals, I believe.

    Be sure to take along a list of ALL prescription medicines you have taken, beginning in 2012 and until the present time. Include names, dosages, how long you used them, what they were, or are, intended to treat. Also, if you can remember, describe the negative side-effects you may have experienced after starting on a new med.

    A drug prescribed for a stomach ailment, for example, may also react on the body's dopamine levels and result in imbalance. Sadly, in worst-case scenarios, the adverse results can be irreversible.

    Allow me, please, to suggest that you read this segment (link below) from a Baylor U. book on movement disorders:

    bcm.edu/healthcare/care-cen...

    At the bottom of that page is a list of drugs known to cause adverse reactions in some of the population suffering with movement disorders.

    Wishing you the very best,

    ChristianEd58

  • You're very welcome, it was an interesting 22yrs I must say that. That's a valid point, no, I didn't require any help. I looked at the list of drugs in the link you sent fortunately I've never taken any on the list. One medication I have been taking for years for neuropathic pain is Venlafaxine. When looking up Akathisia it was on the list of medications that could possibly cause my 'foot stomping'. I can get a list of all medications I've taken from my VA records. I do know that my VA Neurologist put me through tests of at least 5 drugs trying to figure out my balance loss.

    Thank you very much for the link. I'll have to see what kind of baloney my VA neurologist puts out to me on Wednesday.

  • My husbands problems started with balance and falling. His head is always down and he can't look at me to talk. His legs don't go where they should and takes forever to move them. We went to 7 neuro. Dr's. He was diagnosis with CBS Cortical Basel degeneration. Part of his brain is in atrophied. I don't know how this differs from PEP. Balance is major part of how he feels he can walk. So much the Dr's don't know.

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