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Misdiagnosed after 10 years!!

Posted , 31 users are following.

carolinagirl1
carolinagirl1

I was diagnosed with MS in 2005. Now im being told I DO NOT have MS . My neurologist I had for 6 years left the practice, I was turned over to another neurologist within the same office and he says I don't have it. I was shocked, got a second opinion and he's saying the same thing! He says my MS lesions dont look lije MS lesions and I dont have enough neurological findings. This has been a nightmare. I have so many MS symptoms, . Ive seen 3 other specialty doctors, a vascular doctor, a spine doctor and a neurosurgeon that checked me for Chiari Malformation and all 3 cant find anything wrong in that area. Has anyone else had this happen to them ??? Im in USA and im hearing and reading things thst say that people are being misdiagnosed with MS, but then they cant tell me what I do hsve. My main symptoms are chronic fatigue, PAIN in my legs, feet and ankles, very sensitive to heat, much cognitive changes. and spasticity. I have 11 lesions and a clear spinal tsp. Any thoughts?

6 likes, 67 replies

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  • lauri99725
    lauri99725 carolinagirl1

    Posted

    I was also been told I do not have ms. There was a blood test that confirmed I did not have it.

    i have been under drs care since age 38. I am now 64.

    Optic neurotic,evoke potential,balance,fatigue,muscle weakness,very low vitamin D3 ,mental confusion ,depression, and abnormal albumin were why I was intially given the diagnosis.

    However, today a blood test for lupus came back positive. I do have rashes on my face and thighs when it is cold. Similar symptoms as ms.

     HOWEVER, I have taken epilepsy medications since age 9. I have been on Lamictal XR for over 10 years. ALL of the same symptoms could be reactions to LAMICTAL XR. This has never even be reviewed by any neurologist. My current neurologist did send me to a ENT who diagnosed a thyroid condition. He is sending me to a rheumatologist to recheck the lupus finding and other arthritis conditions. Then,he will determine if it is a medication side effect!

  • jeralyn31046
    jeralyn31046 carolinagirl1

    Posted

    I keep seeing comments about a blood test for MS. Only if it was from a spinal tap. I hear and feel personally everyone's frustration.

  • jeralyn31046
    jeralyn31046 carolinagirl1

    Posted

    This is further complicated by the fact that the criteria changed in their medical book in 2012. To add that lesions need to be identified in specific areas. My newest neurologist says i have the same 7 lesions i had when diagnosed 40 plus years ago but none in that area. MRI is abnormal however tbey dont know what or why. They have left MS pn my chart til they figure it out but with

    Dr guidance i have been off MS meds a year now with monitoring. Technically i think it is a change in Diagnostic criteria as some neurologist were not applying pre ious criteria consistently. We are all caught in the middle.

    Jeri

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