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What to do now?

Posted , 4 users are following.

chan214
chan214

I was diagnosed verbally with MS by Neurologist #1 and  #2.  Neither one wrote the diagnoses in my medical documents.  However, if I were to seek medical attention from any practicioner in their network, it is notated in my records as MS patient.  

I was not diagnosed with MS by a third neurologist (not in the same network as neurologist #1 and #2).  Neurologist #3 explained that he did not see any evidence of MS in any of my scans in the past three years. 

I am not registered as having a disability.  How could this affect my insurance coverage or even visits to doctors, etc?  Any suggestions?

0 likes, 3 replies

3 Replies

  • wendy80842
    wendy80842 chan214

    Posted

    if you're in the UK, you need to see your GP about it being properly documented, assuming that this is what you want to happen, in your medical records. unfortunately, MS is a little tricky to diagnose (dx), so your test results are open to interpretation. you haven't mentioned having a lumbar puncture (LP) test done to look for oligoclonic bands, as this is a very useful tool in dx.agin, if you're in the UK, you could try talking to the MS society about how insurance might be affected. i definitely wouldn't want the fact that i have MS missing from my medical records, just in case of emergencies, but that might just be me?! i am registered as having a disability, which is entirely down to the person themselves, again, in the UK.

    i hope you get everything sorted out very soon,

    take care.

  • patricia48825
    patricia48825 chan214

    Posted

    Yes this will definitely affect your insurance, particularly any holiday insurance you take out.  As MS is noted on your medical records this could also be on your GP notes.  If you had an illness or accident on holiday your insurers will request your medical notes IMMEDIATELY by fax from your GP and if you have not declared MS you will have no cover.

    I have this problem.  Six years ago was diagnosed with MS by one team of Neurologists (following brain scan showing demyelination, inflammatory lesion and on lumber puncture oligoclonal banding).  I was then transferred over to the MS team of Neurologists who say they are not convinced my symptoms are due to MS and that I definitely do not have MS.  However, MS is on all my GP records and when I go to GP with my terrible symptoms of left sided body pain, burning, coldness, numbness, I am simply told it is MS!  Absolutely bizarre.  I cannot take out holiday insurance  because of this.  You can imagine the answer I get when I tell prospective insurers "GP says I have MS but Neurologists say I do not".

    Hope this reply is helpful to you, and good luck.

  • BobJS
    BobJS chan214

    Posted

    [color=#333333]My meds (Aubagio) cost $67,000/yr.  Betaseron I was on $32,000/yr but I've been on it since 2001 and it stopped working.  Go to another Neurologist and tell them you want a Visual Evoke Potential test, a Lumbar Fluid test, and a MRI.  Without insurance I wouldn't get the medicine.  I pay $10.00[/color].
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