Hello
I am new here. I was diagnosed with MS 5 years ago (I probably had it for an additional 8-9 years) symptoms then would only last a day maybe two and I would go back to being perfectly normal so partly my fault for not going to the doctor and advocatin however, whenever I would go to the doctor I was told I was stressed or working to hard. Fast forward to 2014 when I was working and things really got out of control and they didn’t go away. I feared I must have a brain tumor went for an MRI where they found multiple brain lesions with a suspected MS diagnosis. I went to Boston to have a battery of tests done and two months later I was diagnosed with MS. I sought out a second opinion from another Boston hospital as I have heard to many people either do not get diagnosed when they have MS or it takes forever or get diagnosed to find out years later they don’t have MS. The second doctor agreed with the diagnosis so I began getting my treatment and care a little closer to home. Life has thrown a few curve balls and due to different symptoms I have I can’t always drive the 40 minutes I need too get to my current neurologist office, so I decided to go see a neurologist at UMASS in Worcester thinking I was simply transferring my care from one neurologist to another. This neurologist is pretty sure I have MS however, I am what he calls a “grey” diagnosis because I don’t check off all the MS diagnosis criteria specifically, I did not have oligoclonal bands at diagnosis. All my other findings are compatible with an MS diagnosis. Symptoms, MRI I have juxtacortical lesions that are specific to MS only and many other areas of the brain as well thankfully so far no spinal lesions. I have vitamins D deficiency, and tested positive for having had at some point Epstein-Barr virus and my index is very high. This doctor has me questioning my diagnosis now, worrying about being that person who took forever to get a diagnosis devastated when I got an MS diagnosis and all that entails, took years to accept the diagnosis and now worrying the MS diagnosis will be suspended and here I go back into the black hole of the “I don’t know what you have” from doctors. I have not officially left me old neurologist and struggling to know what to do. Obviously if I was grossly misdiagnosed I would want to know that however, I don’t want to fall back into the unknown simply because I don’t check off every box for diagnosis. I am no longer working so I live off my SSDI and LTD if he undiagnosis me I will lose my financial means to survive and still can’t work. Lots of cognitive issues, fatigue, vision issues, muscle weakness and limbs get tired easily, and lots of pain. This doctors primary focus is on no oligoclonal bands. My original neurologist who did the spinal tap said bands help to definitively diagnosis patients she said from her perspective this test was mainly to rule out other diseases that can mimic MS. This new neurologist and he is accurate said 90% of MS patients have these bands. I also have hypogammagloulinemia (low IGA, IGG, IGM) I have tried to research whether this could provide false negative results in a spinal tap for oligoclonal bands and I can’t find any studies or answers. So now I sit here everyday worrying about taking a DMD and what they can do to me and I worry to not take them and have progression of MS if I even have MS, heads spinning after taking years to accept this diagnosis. Sorry this is so long I could really use some advice and wisdom.

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