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Thread: Sci and MS now I am really lost

  1. #1

    Sci and MS now I am really lost

    Hey folks!

    Been awhile since I posted. I had a t5 sci about 15 years ago.

    It was about two years ago I started to get dizzy when sitting for to long. It started with light sensitivity and sweating around my eyes then escalated to a dizzy dumbness when I stayed up to long. Like right now for instance I?m really hot with bags under my eyes. My brows and eye lids are sweating. It comes on strong when I?m in pain but don?t know it.

    I saw everyone under the sun as far as doctors and an mri later I have a white dot where my left optical nerve attaches to my brain. Diagnosed MS.

    Am I supposed to accept that little dot makes me not able to think straight, see clearly and sweat around my eyes when there is something wrong with my lower half?

    The doctors are great but none are familiar with SCI or AD.

    Is this a autonomic thing? Has anyone heard or experience these?

    I swear as well it?s a uti I can?t cure. You know the feeling. Like death is near.

    Any suggestions or answers please.

    If this rambles im sorry. It?s just how it gets me

  2. #2
    So sorry that you are having to deal with both SCI and MS. Yes, it is common to have autonomic dysfunction like orthostatic hypotension from MS, depending on where you have lesions. Keep in mind that you may have more lesions than show up on MRI...70% of the nerves in a tract must have lost their myelin sheath for symptoms to appear, and even that may not show up on an MRI (did you have a gadolinium enhanced MRI??).

    AD has also been documented in people with SCI if they have sufficient spinal cord lesions. Was your MRI done on both the cord and brain?

    Are you seeing a neurologist who specializes in MS care, or going to an MS Center? While a lot of neurologists don't know much about SCI, there are also a number who are not up-to-date on MS diagnosis and treatment.

    See if you can find an MS support group nearby. The National MS Society sponsors these in most of the areas of the USA. https://www.nationalmssociety.org/Re...t/Find-Support

    Your profile doesn't indicate where you live. Adding that would help in providing you with resources.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Thank you for responding. That really means a lot. Its hard to find a helping hand in my health situation.

    I have been researching thanks to you on the orthostatic hypotension. Not just a solution of medication but multiple other outside factors I can change to help this dizziness/light headed feeling. I can barely get by now.

    MRI info: I believe there was a contrast to show where lesions are. I remember the ivy they gave me half way through. No there was no mri on my spine when given the mri on my brain.

    I live in New Hampshire. Newport to be exact. I can't find a neurologist who specializes in MS. Sadly the doctors have to be a jack of all trades because there isn't very many people. There's not a spinal cord doctor in two hundred miles. The closest one is Boston, a four hour drive. I can't handle a hour drive.

    I will try a support group in the spring. The weather is never promised and the nearest group in a hour away.

    Thank you. It means a lot.

  4. #4
    From the CLAMS.org website (which has not been recently updated); worth a try. MS specialists recommended in NH:


    1. Donald W. Ayres, M.D., Neurology, Suite 3A,Lebanon, NH 03766 (603) 448-0447(800) 582-7080
    2. Dr. James Bernat, MD, Neurology, Dartmouth Hitchcock Medical Center, One Medical Center Drive, Lebanon, NH 03756-0001 1-603-650-5104


    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    FYI - Dr Ayres is no longer seeing patients, however, he is still involved in the practice according to their website. (www.uvnn.com) Might be worth calling them, and seeing if they can give you a recommendation? (My neurosurgeon is from there, so the name rang a bell

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