I haven’t posted since my hospital admission in March for LP and steroids. That admission saw me diagnosed with Idiopathic Intracranial Hypertension as my LP turned up a pressure of 39! Also the CSF showed the oligoclonal bands and proteins that prove demylination. However as MRI’s showed no new lesion’s they decided to call it a Clinical Isolated Syndrome and hope that I got no others. So I have been trying to adjust to living with the IIH as the medication is pants and trying to get back to work which I have just managed last week after 6 months off. The meds are so bad they affect my memory and cognition so much I am currently a nurse who is not allowed to work clinically, I am doing training, rostering and admin!
Then about 4 weeks ago the crushing fatigue hit again, new hypersensitivity and pain down my right leg this time! My GP who I cannot fault has been amazing and did covering bloods showing hideously low iron and vitamin d levels! So that answers the fatigue in some way! Was due to see my neuro yesterday anyway so knew wouldn’t get in any sooner and she agreed that it was time to diagnose the MS and refer me to the MS nurse to start drug treatment. So here I am with my buy1get1free neuro conditions! I know the MS nurse by her fabulous reputation and look forward to hearing from her, discussing treatments and having someone available for advice. Well that’s it really just feels like its been a hell of a long journey getting here!!!