Discussions By Condition: I cannot get a diagnosis.

High Protein in CSF, Babinski Reflex and Positive ANA

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: ctcollins
  • September 14, 2008
  • 10:15 PM

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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11 Replies:

  • Hello Mr. Collins, Based upon your description, my inclination is that your symptoms are somewhat consistent with dyssynergia cerebellaris myoclonica, or Ramsay Hunt Syndrome Type II. There are basically three types of RHS, type 1 being associated with herpes zoster oticus and type III associated with ulnar neuropathy. Ramsay Hunt Type II is within the class of neurodegenerative diseases and is progressive in nature, believed to be associated with cellular mitochondrial defects. The typical onset is 30 to 35 years of age. Please realize that the internet is definitely not a medium through which any type of diagnosis can be made and I'm certainly not stating that you have RHS II, but that you should suggest that your neurologists begin a work-up to either confirm or rule it out. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 15, 2008
    • 01:38 AM
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  • There really isn't anything in this presentation, vague it may be, to suggest RHS II.
    fewd4thought 126 Replies
    • September 15, 2008
    • 08:20 AM
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  • Cancel that. Terminology flub on my part.
    fewd4thought 126 Replies
    • September 15, 2008
    • 08:26 AM
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  • Okay, once again Mr. Collins I am of the opinion that your constellation of symptoms may share a resemblance to Ramsay Hunt II. I am new to this forum and I'm a retired neurologist. I recently closed my practice after almost 39 years and simply happened upon the site during a web search. I've noticed since posting here for only several days that my opinions rapidly come under fire and while I certainly have no objections, it may well be that I'm amidst a group that either consists of persons not trained or licensed as medical doctors or steadfastly object to allopathic medicine in favor of alternative treatment. Nevertheless, my opinion concerning your inquiry is based upon my training and experience. Again, I would suggest that you have your healthcare specialist evaluate your symptoms to determine whether Ramsay Hunt may represent a differential diagnosis. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 15, 2008
    • 10:34 PM
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  • Thank You, for your information Dr. Cottle. I have an appointment next week with my Neurologist and I will ask him to check into this. I have been told by two doctors that from my test and my symptoms it is likely that I have Multiple Sclerosis or maybe Amyotrophic lateral Sclerosis, do you see either of these as an possibility. Thank You, Chris Collins
    ctcollins 2 Replies
    • September 16, 2008
    • 11:39 AM
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  • Well, I would think MS or ALS somewhat less likely. In particular, ALS with bulbar onset has a very characteristic presentation and is the result of an actual breakdown in neural communication between nerves and tissues. In other words, neural damage to the extent that one's arm becomes non-functional would not resolve minutes later. It is slowly progressive in nature and in one direction. There is less sign of tremor in the case of ALS and more evidence of something known as fasciculations, which are observed in early stages of progression by persussing the skin sharply and repeatedly with a reflex hammer. These percussions cause the skin to undulate and dance about because the nerve endings and neural transmission are disrupted by the disease. Most patients with ALS develop problems speaking and develop a very recognizable nasal tone and difficulty with articulation. There is also evidence of choking episodes or difficulty swallowing, both of which are due to deterioration of larygeal muscular tone and subsequent inability to control saliva secretions. There is also a history of falls that most often result from a progressive festinating gate rather than simply losing one's balance. Festination can be described as a sort of quickening pace and forward motion sort of on their toes as the person tries to constantly force their feet to stay under them to control an upright position. ALS also commonly causes very noticable changes in personality, most often in the form of increased benevolence and sublime interaction with others. There are many clinical signs of the disease, but I don't think your symptoms are a good fit for ALS. There is a form of the disease thought to be a variant of ALS known as Motor Neuron Disease, but it's onset is far more rapid and you've been experiencing symptoms too long. MS is an autoimmune disease wherein the nervous system is detected as foreign to the body and comes under attack, creating various periods of relapsing and remitting neurological signs. I suppose it's a consideration in your case, but your symptoms are quite florid by description and in such cases enhanced rice grain lesions on MRI are typically evident. The speed at which your symptoms appear to transition also raise question as to whether MS would be a consideration. It's clearly impossible for me to make a better educated opinion in the absence of direct examination, but I would suggest that RHS II is a justifiable addition to the list of differentials. I certainly understand that the symptoms are troubling and frustrating to say the least, but try to be patient. Most all neurological diseases and disorders have an insidious onset and during this stage, all such symptoms can be associated with a number of underlying causes. But all roads eventually lead to Rome and your symptoms will soon present enough evidence for confirmation in one direction. Let me know how you're doing. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 17, 2008
    • 00:21 AM
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  • I would consider testing for Lyme disease and realize that the initial antibody test can be negative in 50% of cases and may require more sophisticated tests to confirm.Sam Eisa, MD
    Anonymous 42789 Replies
    • September 17, 2008
    • 02:03 AM
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  • Thank You again for all your information, I have forgot to list a few other problems I have, fasciculations in the right arm, you can see the muscle jumping up and down in my right forearm and right bicep and it is constant and worst when arm is at rest. Also my right arm is in constant pain due to cramping, I also can not turn my palm up on my right arm ( can only turn to side ) nor etend it all the way out and hand is usually in a claw like position. And for the past 9 months I have buildup of thick clear mucus in throat that I have to cough up many times a day, but I have no sinus problems and also have had food get stuck in my throat from time to time that had to be coughed up. During any exertion my voice goes completely hoarse and sometimes i can not project my voice ( it sounds like in whispering ). I have had several falls in the past two years and the latest on I believe I broke the bone in my hand below my pinky finger ( the bone is now curved up in an arch ). Thank You Very Much, Chris Collins
    ctcollins 2 Replies
    • September 17, 2008
    • 02:29 AM
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  • From what I have read dyssynergia cerebellaris myoclonica is in fact another name for RHS type 1, RHS type 2 being caused by the reactivation of pre-existing herpes zoster virus in a nerve cell bundle. Of course I realize semantics are hardly the issue here :)Other than that RHS sounds really plausible although I do not know how it is diagnosed or treated.Hope you will figure it out!P.S.: I'm really glad to see people with such experience as Dr. Cottle on this forum. Thank you, please keep on replying !
    Anonymous 42789 Replies
    • September 17, 2008
    • 09:25 PM
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  • Well, there are a number of non-medical reporting sources that incorrectly label the variants of Ramsay Hunt Syndrome, but when I went to medical school type I was associated with Herpes Zoster Oticus and type II represents dyssynergia cerebellaris myoclonica. Type III is associated with a particular type of ulnar neuropathy. Perhaps someone may need to inform the folks at sites like Wikipedia that they need to correct their definition. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 18, 2008
    • 02:09 AM
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  • I hate to Piggyback but I dont know how to post one other than a reply. Please forgive this I am not in the best of mind Dr. Cottle, I am new to this and i really just found it as well. I am sure many people are very glad you are willing to answer questions on here. This site only exsists because so many dr have lost the personal touch and people feel so helpless. So i say thanks. I am a 38 yr old male and had a sudden onset of problems. I started taking Chantix to quit smoking and with in a week was in the hospital thinking I was having a heart attack. I developed Atrial Fib/Flutter. They tried several meds and i it made me feel too bad. I Started getting Dizzy and feeling slow. Went to ER and they did spinal tap and MRI the Tap showed High I had Heart surgery in Houston TX for the Electrical problem. I had showed signs of a delyminating problem due to double the level of that type of protien. The MRI showed one small spot on the brain. Since then I had to put on coumadin and then had RF ablation in Houston and then one month after developed a blood clot in the left leg.So coumadin for another 6 months and then test for hypercoagulation problems. The things that I have all the time are as follows Pain in both lower legs(could be from blood clot)(Compression socks help) Dizziness ( told vertigo saw ENT) At times Extreme Fatigue tingling in legs after walking alot and hot showers back pain Palpatations Gastro discomfort( had a colon check had some diaticulal places) Head fills full of cotton for a week. All this has been going on for almost a year. If you have some Idea Please postGod bless Everyone
    Anonymous 42789 Replies
    • October 15, 2008
    • 08:07 PM
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