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  • jacobus
    I am currently seeking a diagnosis and treatment for strange symptoms that I have been having off and on for about 5 years.  These symptoms were initially limited to numbness and tingling in extremities and extreme fatigue, but over the last year have developed into a longer laundry list to include sharp needle stick feelings, memory and speaking issues and vertigo to name a few, causing me to suspect something more serious (especially considering my profession as a military aviator).

    Leading up to seeing a neurologist I had every test imaginable completed (B12, Lyme disease, you name it, all normal).  I saw my neurologist for the first time a month ago.  My neuro exam was abnormal for a few reflexes, positive lehrmittes sign, positive babinski response (never heard of that before) and gait issues (both on the right side, which is the side with most of my issues).  He mentioned that MS could be a possibility. He ordered a spinal x-ray, EVPs, eye exam and MRIs of C spine and brain.

    Fast forward to this week.  I began experiencing, for the first time, a troubling tightness in my chest wrapping around the right side (also presented with very sharp pin  prick sensations). Being chest related, I quickly saw my GP and had an ECG which was normal.  It was suggested to contact my neuro, which I did, and they asked to see me today.

    After coming in, he went over my test results which were clear of any lesions were more or less fairly normal, and that hypermobility could be a cause of some symptoms, but would not explain some of the neuro exam abnormalities.  He subsequently ordered a thoracic MRI, somatosensory EVPs, EMG, and EEG.  So we are looking at another month at least for answers.

    I avoid reading too much online about symptoms and am not a person to self diagnose, but I am really ready to get to the bottom of this, even if it means the end of my current career.

    I guess my question is, is there anybody out there who has had a difficult diagnosis (be it MS or other neuro disorder)?

    Has anybody out there been diagnosed with MS with no apparent lesions on a C Spine or  Brain MRI?

     
  • connief59
    Your story is very similar to mine.  My symptoms started last December.  I've had brain MRI, VEP, and nerve conduction study and all were within normal range.  I will have another brain MRI next month to see if there are any changes.  I saw a Rheumatologist yesterday and he said to stay with the neurologist because he believes I have MS and said to request an MRI of the spine and lumbar puncture if there are no changes in my next brain MRI. It was the neurologist's suspicion as well until the tests came out normal.  I have the sharp pains you described but mostly when I'm trying to sleep. Gabapentin has helped a lot!  I also had vertigo for a solid month.  I don't have answers for you but wanted you to know that you're not alone.  It is frustrating and horribly expensive and discouraging especially when they tell you tests are normal when you're anything but.  Hang in there and good luck to you!
  • randie105
    Hi Jacobus
    I'm so sorry to read about your experiences. I'm 26 and have been struggling with symptoms for over a decade. They used to come in flares, but now it's been a steady year of only worsing and new symptoms. I get the tight, rigid sqeeze around my chest and abs, weakness, fainting all the time, but never unconsious, jerking limbs, numbness, pins and needles, left side of my face "falling", arms going rigid so I can't move them, migraines, constant nausea, extreme fatigue until i'm collapsing and in an altered mental status, confusion, over all random pain, tremers, weakness, NO memory *3/100 in ranking with the general population*. I've been tested for everything under the sun expect MS, but my doctor suspects it now and is sending me back to a Neuro who specializes in MS. I had an MRI 2 years ago with no lesions, but she said that isn't an end-all-be-all indicator.

    It weird though, after being told that it was just anxiety by so many doctors who never even listened to me, I actually find relief that I may know whats going on and know what I can do to help it. I may finally have treatment. I never thought i'd say that about something as scary as MS.

    Good luck to you and your journey towards health and a better quality of life. Keep us posted!
  • MS_Navigator_Steph
    Hello Jacobus,

    The diagnostic process can be difficult and take some time as there is not one symptom or finding that can, by itself, confirm a diagnosis of MS. Here is some information from our website about not initally having lesions on an MRI that I think may be helpful:


    Diagnosis of MS

    Because MRI is particularly useful in detecting central nervous system demyelination, it is a powerful tool in helping to establish the diagnosis of MS. However, approximately 5 percent of people with clinically-definite MS do not initially show lesions on MRI at the time of diagnosis. If repeat MRIs continue to show no lesions, the diagnosis of MS should be questioned.

    • Since many lesions seen on MRI may be in so-called "silent" areas of the brain that don’t produce symptoms, it is not always possible to make a specific correlation between what is seen on the MRI scan and the person's clinical signs and symptoms.
    • In addition, with advancing age (probably over age 50), there are often small areas seen on MRI in healthy people that resemble MS but are actually related to the aging process.
    If you would like a second option, you may want to use this link to find an MS Care Provider.

    Best,
    MS Navigator Stephanie
  • JenH
    I have pretty much experienced all of the symptoms you listed & then some. I have also had all of the tests you've listed and all came back normal. My neurologist called me the other day , her conclusion @ this point: neuro Lupus, neuro Sjorgrens and neuro sarcoid. She does not think it is MS at this time, however I will have another brain MRI soon, hopefully thatt will rule it out for me. You are wise to not read too much about it online, however i did find help in how to deal with certain symptoms by reading posts and asking questions on this forum. 

    Yes, my diagnosis is scary and difficult, however I feel a sense of relief. I am on meds now & they have helped tremendously. What I have is usually not as debilitating as MS, and will require many RX's to manage symptoms. It is so tough waiting for a diagnosis, my prayers are with you today; I hope you are feeling better today & i do hope you can continue to work. If it turns out your diagnosis is similar to mine, then I highly suspect you will be able to continue working. I am functioning at a very high level now and I am so thankful as I am a young wife and mother of two wonderful boys, ages 9 & 10. 

    Take care, 
    Jen 
  • arcadia375
    MS is a very difficult disorder to diagnose. I am newly diagnosed, seeing doctors at Stanford Medical, and one very important test was of the cerebral spinal fluid via lumbar puncture. I didn't see you mention that above, but the evidence of inflammation in my CSF was an important element combined with all the other tests and physical exams for my doc giving me a 90% probability of MS diagnosis. I plan to start meds in the coming month in an attempt to slow down progression. Good luck to you and I will hope for the best. 
  • jacobus
    Thank you all for the replies and support.  I definetly realize that MS, or any other neurological disease can be difficult to diagnose.  By no means am I hoping for an MS diagnosis, but I am at the point where I would like to know for certain what is going on so I can move on with my life.  I have come to terms with the fact that it is unlikely I can continue in the military as a pilot, so if that is in the cards I would like it to happen as soon as possible.

    As of now no lumbar puncture is scheduled. My neuro wants to go down the thoracic MRI, EEG, more EVPs and EMG before going for the spinal. 

    Meanwhile on the Army side of the house, I am having to have a full NeuroPsych exam because I brought up memory issues and having difficulty getting words out a few times.  I am certain there is no underlying psych problem (with the exception of minor anxiety about not knowing at this point) especially due to a abnormalities during the neuro exam, but I understand the Army having to check on everything.
     
  • janette-ayub
    Hi Jacobus,

    I just wanted to chime in and hopefully not repeat what everyone has already said, but let you know that the process is long and luckily you are apart of this wonderful online support group.
    I am in a very similiar boat attempting another MRI and playing the waiting game. 

    Having on and off symptoms for over a decade my one relief has been this site. I truly hope you do find an answer but more importantly I hope your days are filled with joy and not in worry about what is going on. I know that's hard to say, but I was to the point where "not knowing" was destroying my life- an aspect that doctors don't care about. Know that you always have an outlet here.

    Best Wishes,

    Janette
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  • dkw
    Hey Jacobus. I can only share my experience with this disease, Hope this helps a little. I watched my mother deal with this disease for over 30 years. She went from trouble walking, to a wheelchair to a bed in that time. Sadly for her after Many years and Many neurologists later (that is not capitalized for a reason) she was never correctly diagnosed. She exhibited All of the symptoms of this disease. She sadly passed in 2014. In 2015 my own personal journey with these symptoms began. My Mri essentially normal, nerve conduction normal, none of the top favorites they like to try and pin this on. Am with a new Doc and 2nd mri and spinal tap pending. Disease progressing. Was able to obtain my mothers records. Her Mri’s, several, all just some white matter, nerve conn, normal, tap, normal. Seems to be a form of Ms, maybe, that cant be diagnosed with the standard tests. Ms, they say, isnt hereditary. But they did discover a gene, in 2016, that can be found in some, that can be passed. They still dont test for this in the states. We can both, all, just continue our journeys of discovery. I am hoping for good fortune for you. 
    d.w.