Discussions By Condition: Nerve conditions

High Protein in CSF, Babinski Reflex and Positive ANA

Posted In: Nerve conditions 9 Replies
  • Posted By: ctcollins
  • September 15, 2008
  • 00:20 AM

Hello,
I am an 38 yr old male and for the past 2 1/2 yrs I have been out of work due to constant head aches and migraines, fatigue, dizzy, constant pain, ringing ears ( very loud ), sensative to sound causes myoclonic episodes, eye pain, blurred vision when hot, eye floaters. Extremely sensitive to heat, when hot have glazed vision and dry eyes, very short rapid breathing and muscle jerking and sweating ( it looks like i am having a seizure ).Everytime I eat and I am chewing solid foods the back of my neck, my tounge, roof of mouth and throat get very tight, cramping and painful making it very hard to eat and swallow anything but soft food that does not take much chewing. All of my fingertips are almost completely without sensation causing it hard to hold objects. Painful cramping in back of neck, visible muscle spams in right hand and arm at rest, R/H index finger keeps jumping up. I always wear sunglasses inside or out due to light makes my eyes and head hurt 4x worse, I also have a severe gait problem i drag both my feet and right foot is twitsted out to the right at about a 45 degree angle. I have to use a cain and still have problems with balance and falling, If i get in any moving object ( car, plane, train, etc. ) i get instant motion sickness and severe head and eye pain. I have myoclonic seizures ( when over heated or over exertion ) and my right arm tremmors (at rest), i also have muscle cramps, pain and stiff muscles. One day my right arm and shoulder locked into a certain position for about ten minutes and could not move it at all and last week while sitting in a chair i became paralyzed completely for about 25 to 30 seconds and started moving in slow motion then was back to normal. There are alot of other problems but would take to long to list and I cant remember alot of them until they happen, But these are the most common.

I have had every test done at two different hospitols refered by my neurologist and have no definate answers to what is the cause, I've had 4 lumbar test that show my protein is at 114, was diagnosed with Myoclonus after EEG test. 6 MRI's no lesions and the last one one of my Neurologist thought i might of had a stroke but the other 2 said I have not, the MRI's on my spine show most of my dics to be degenerative and signs of mild to moderate spinal canal stenosis and mild to moderate bilateral neural foraminal stenosis, and i also came back possitive for autoimmune and ANA at 1:320 in nucleolar pattern, babinski reflex on both feet, Creatinine 1.4 and high macrophage.I have had multiple eeg, emg, ct, blood, urine and all the eye test you could immagine but these are the only definate findings from all my test. If you have any thoughts i would be very happy to hear them.



Thank You for your time, Chris Collins

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9 Replies:

  • Hi Chris, you seem to be in rough shape.While surfing the forums to see if there is anyone else feeling the way I have for the past ten years, I came across your thread, and let me say...WOW!I have a lot of the same symptoms as you except for the numbness and the degenerative disks. That sounds like a totally different problem than the head thing. You may have more than one problem and are like me, trying to connect all of the dots to make that beautiful picture of an actual diagnosis.This is so amazing to me that there is someone else out there who is actually going through what I have been suffering with for this long.But anyway, I have seen a number of Neuro's and the one I am with now is totally baffled and will not give up. Have you seen a Rheumotologist (sorry for the spelling)? They are constantly thriving on solving and diagnosing new autoimmune diseases.10 years ago for the first spinal tap, the protein was 119 which rose gradually for 8 years. So far I've had 9 of them making the 9th 2 weeks ago. The pressure came down (as it has in the past only to fluctuate between taps) and the protein rose to 144. The antibodies are elevated, I cannot remember what the levels were.I've had the loss of vision that lasts for 5 minutes to 5 hours? The floaters are unbelievable especially outside or in a bright room. Head feels horrible every day and seems as if it is literally going to explode through my ears.Like you, I have many other symptoms (almost 3 whole pages long) and am very discouraged about finding the problem. I'm tired of having the problems and no actual diagnosis.Well, hope they could find something for you as I am hoping the same for me. If you don't mind throwing a post my way if they ever do find the cause of your problems as it may be of some benefit for me and mine.Thanks and hang in there.
    twinky70 8 Replies
    • December 5, 2008
    • 00:36 AM
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  • I would see a rheumaologist as well. An auto-immune disease can definatly attack your nervous system. Lupus is one that can effect your nervous system. It can really attack anything. Also, request a Vit D test if you can. Vit D deficiancies can cause all those symptoms you are describing. My rheumy told me it is becoming more and more common because as a whole we do not get enough Vit D. Hang in there. Someones bound to get to the bottom of this.
    pixiepony 3 Replies
    • December 9, 2008
    • 02:56 PM
    • 0
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  • I am 63 and have had similar symptoms as yours since 1968 in the military. One MD told me I may have had meningitis in service or that toxins in service (AO, AR or AB) may have caused this while in Korea but VA doesn't cover Korea unless soldiers were stationed in Infantry units at the DMZ. I traveled the DMZ and other sites where Agent Orange, Red and Blue were stored or applied to vegetation. Other neurologists told me that I had MS (MRI's were clean), atypical spinocerebellar degeneration, spinal cord stenosis yet have no spine arthritis or calcium deposits to cause the symptoms. VA and Army claim I was disabled prior to entering service in spite of no medical evidence for those claims. Service medical records were sanitized of any usable medical records. My symptoms appeared to be arthritic in nature but there was no arthritis although I had one RANA positive and all other ANA's were negative. CSF was elevated 2 times in 1985 and 1988 at Mayo Clinic. I am crippled and must use a cane to walk, tend to fall and have no good balance. I failed a Class III flight physical in 1974 due to vertigo but after an appeal was given a physical with night flight prohibited. I was unable to fly airplance in any case. MRI's found two small strokes two years ago but there were no symptoms other than severe headaches. I have a large amount of VA Rx meds to take to control muscle spasms, headaches and sudden bouts of distonia where my hands cramp and I cannot let go of whatever I am holding. I have had grand mal seizures many years ago. I have to tolerate and endure this because there has been no diagnosis of a disease process with treatment, only a condition described. I am on VA 10% SCD, Soc Sec and state disability since 1992 when I was 47 years old. Hello, I am an 38 yr old male and for the past 2 1/2 yrs I have been out of work due to constant head aches and migraines, fatigue, dizzy, constant pain, ringing ears ( very loud ), sensative to sound causes myoclonic episodes, eye pain, blurred vision when hot, eye floaters. Extremely sensitive to heat, when hot have glazed vision and dry eyes, very short rapid breathing and muscle jerking and sweating ( it looks like i am having a seizure ).Everytime I eat and I am chewing solid foods the back of my neck, my tounge, roof of mouth and throat get very tight, cramping and painful making it very hard to eat and swallow anything but soft food that does not take much chewing. All of my fingertips are almost completely without sensation causing it hard to hold objects. Painful cramping in back of neck, visible muscle spams in right hand and arm at rest, R/H index finger keeps jumping up. I always wear sunglasses inside or out due to light makes my eyes and head hurt 4x worse, I also have a severe gait problem i drag both my feet and right foot is twitsted out to the right at about a 45 degree angle. I have to use a cain and still have problems with balance and falling, If i get in any moving object ( car, plane, train, etc. ) i get instant motion sickness and severe head and eye pain. I have myoclonic seizures ( when over heated or over exertion ) and my right arm tremmors (at rest), i also have muscle cramps, pain and stiff muscles. One day my right arm and shoulder locked into a certain position for about ten minutes and could not move it at all and last week while sitting in a chair i became paralyzed completely for about 25 to 30 seconds and started moving in slow motion then was back to normal. There are alot of other problems but would take to long to list and I cant remember alot of them until they happen, But these are the most common. I have had every test done at two different hospitols refered by my neurologist and have no definate answers to what is the cause, I've had 4 lumbar test that show my protein is at 114, was diagnosed with Myoclonus after EEG test. 6 MRI's no lesions and the last one one of my Neurologist thought i might of had a stroke but the other 2 said I have not, the MRI's on my spine show most of my dics to be degenerative and signs of mild to moderate spinal canal stenosis and mild to moderate bilateral neural foraminal stenosis, and i also came back possitive for autoimmune and ANA at 1:320 in nucleolar pattern, babinski reflex on both feet, Creatinine 1.4 and high macrophage.I have had multiple eeg, emg, ct, blood, urine and all the eye test you could immagine but these are the only definate findings from all my test. If you have any thoughts i would be very happy to hear them. Thank You for your time, Chris Collins
    billw_willy 5 Replies
    • December 16, 2008
    • 00:56 PM
    • 0
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  • That is an awful shame going through all of that. Suffering is one thing but not knowing for sure why you are suffering is the worst.When I finally get diagnosed I think I will become a doctor. I hate seeing and reading and worst of all going through life in agony.Hope they treat you well and know that while I thought my problems were bad, there is always someone else out there who is worse off than me. You're in my thoughts!
    twinky70 8 Replies
    • January 9, 2009
    • 02:22 AM
    • 0
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  • Twinky 70,I don't know if my msg got thru as the site wouldn't let me login even with my correct login UN and ID.Bill McGraw mcgr3799@bellsouth.net
    billw_willy 5 Replies
    • January 10, 2009
    • 05:37 PM
    • 0
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  • Bill,for some reason my email will not work correctly, cannot send any messages to anyone.But anyway, how are you? Have you found anything out? When I read your thread or post I could not believe my eyes. My Neurologist said to me many of times tha there is someone out there who has the same symptoms and problems as I, but to find that one is almost nearly impossible without the help of other doctor's talking with one another. I cannot believe I found that person. YOU!! We share many similarities with the exception of the disk and heaviness of the arm.I had 9 Lumbar Punctures and every one of them has the high CSF and Pressure. Well the ninthe showed that the pressure was down that day, it always fluctuates, but the protein jumped from the one before last. It is now 144. Antibodies are elevated, I'm not sure which ones and how high. The doctor has been saying since day one that he thinks it is AutoImmune but cannot say which one. This time around he said it is definately AutoImmune and is searching for the right diagnosis. This is going on for 11 years already.When I finally picked my jaw up off of the floor after reading your post, I thought "Great, maybe we could share stories and maybe help one another by telling our doctor's about one another and hopefully get them together for help, diagnosis and possibly a cure". That is why I've been so anxious to talk with you. My Neurologist would absolutely get together with some other doctor and see what his input is and how they would deal with it. He is great when it comes to that.Let me know how you are and what is going on with you and what you think about what I have said. In my opinion, it is worth a shot.You could email me if you'd like and I will get back to you through email as well. Hopefully tomorrow I will have that fixed.Thanks!Tinacassienlexy@epix.net
    twinky70 8 Replies
    • January 13, 2009
    • 03:33 AM
    • 0
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  • Hello, I am an 38 yr old male and for the past 2 1/2 yrs I have been out of work due to constant head aches and migraines, Chris,What have your MD's prescribed for symptomatic relief? My symptoms have changed over the last 25 years especially the sudden vision losses (scintellating schetomas, loss of lower hemisphere vision, double vision), loud chirping in my ears and vertigo. I had a series of "odd feelings," difficult to describe it but would have to either quit driving or slow down when I would have double vision, severe weakness and a dull feeling as if I was about to fall asleep. My headaches suddenly returned but may have been related to two small strokes. I am careful with medications and no longer take dilantin, rather now prescribed neurontin and baclofen for some muscle cramp relief and sometimes I take butalbital for the headaches. I had to retire disabled at age 47, now near 64 and I still get spooked by difficulty in walking, suddenly tripping and getting bruised badly in falls. You mentioned difficulty with your hands. Mine exhibit some distonia where I can't let go of something I'm holding. The muscle cramps start in my forearm and affect my left hand more than right hand. As expected, I can't demonstrate such when I see my neurologist every 6 months. Walking from the parking lot thru the VA hospital is usually the most exercise I get and tires me greatly but by the time I get to see him all I can do is give him a list of events since last time. My prescriptions are renewed and I go home.
    billw_willy 5 Replies
    • January 25, 2009
    • 00:27 PM
    • 0
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  • "I've had the loss of vision that lasts for 5 minutes to 5 hours? The floaters are unbelievable especially outside or in a bright room. Head feels horrible every day and seems as if it is literally going to explode through my ears." Quoted from Twinky 70 Twinky,I know you said you had eye exams for this. Did the opthalmologist tell you why you were having floaters? Were you having any signs of detached retina? Floaters are "normal" unless the amounts are massive. I had lens emplants after cataracts made my vision uncorrectable with a change in prescription and I had the largest floaters I'd ever seen after the surgery. The worst floaters were zapped with a laser and that helped reduce them. The other thing you said was loss of vision for 5 min to 5 hours. 5 minutes is accepable but no longer than 30 min is about the longest you should let it happen and should either go to an ER or see your doctor as an emergency. My MD told me that since I had myopia for so long, my eyeballs are actually elongated and that I could eventually have a sudden detached retina due to that and must be examined and if necessary, repaired within 24 hours or the damage would be permanent. Lately I have had a few minor episodes of scintillating scotomas but only in the very center of my vision when in the distant past I would lose most of my visual field. The explanation for that is "vascular spasms" or tiny strokes going thru the back of the brain in the vision centers. The worst of these was in the early 70's when I was still flying and that wouldn't work too well for safety. I now take an 81 mg aspirin every morning and that seems to take care of the scotomas.
    billw_willy 5 Replies
    • January 25, 2009
    • 00:56 PM
    • 0
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  • Check out Lyme disease
    Anonymous 1 Replies Flag this Response
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