New to MS
I just got my diagnosis over the phone yesterday. I had a lumbar puncture Monday, and am stuck in bed with a spinal headache, though it is much improved today, I can sit up for a little longer. I have to call Monday to try to get in with my neuro earlier than my appointment at the end of the month. Even though we expected the MS diagnosis, a huge part of me didn't think it would happen. It's been so long with nothing coming up in results and doctors telling me they had no answers or could do nothing for me. Now, I have anemia, my first iron transfusion the week before Christmas, and MS. I don't know what to expect. I mean... does the fatigue and brain fog and everything stay or can meds help reduce symptoms? I have so many questions, and I know there are many questions I haven't even thought of yet. How do you... deal with all this? (I turned off location because I felt it was too specific, but I am in the United States)
Welcome to this group. I remember my spinal headache…no fun. So, I am glad you are feeling better. I recall that took me about 2-3 days to get over. I’m sorry that you have MS but hope you feel some relief in knowing what it is and seeking treatment. I can tell you that each patient has a different story. We sometimes have similar sensations or symptoms, but as far as the trajectory of the disease, I think it is nearly impossible to predict. If you aren’t on any medications, I would just suggest that you talk to your doctor about MEDS for MS that prevent further damage; and then separately, what MEDS are available to treat any sensory pain, fatigue or cognitive issues that you are feeling. Is highly recommend taking someone with you to your first appointment to be an extra set of ears and backup person for asking questions. Write those questions out in advance. There are lots of good checklists online that can help. Also, make sure your doctor is one who will take the time to educate you, show you your MRI screens, not just talk about the result. If you are dissatisfied with the communication skills, I would seek out another neurologist because this is going to be an important relationship! Also, I turn to God, who has been faithful throughout all of the hard/harder times in my life to help strengthen my mind and my spirit. I may not always feel well, but looking back, I see how He made new opportunities for me that I could never have navigated on my own power.
Going through diagnosis is tough. It can take a while to come to terms with MS. The symptoms can vary and sometimes symptoms can improve and sometimes we are stuck with them. Depends on thing's 🤷♀️, that even a neurologist can’t predict. I guess this means time will tell. Which is rubbish for us. Wait and see is not fun. Dealing with diagnosis can take a while to except and come to terms with. Prognosis is also hard to gauge. Look after yourself and gather what is best for you, around you. All the best.