Just diagnosed
I’m unsure what to do because I found out 10 days ago that I have RRMS (by MRI and lumbar puncture) but have apparently had MS for some years. My only symptom has been migraines for several years, but I never suspected MS? Now at 50 I’m having my first persistent flare which has caused peripheral neuropathy in my lower body (my active lesion is near my tailbone in my lower spine and my entire midsection from waistline to thighs is numb and my feet are persistently pins and needles) But my GP is telling me that the referrals to specialists in a 50 mile radius can’t see me until May? This seems impossible to me? I can’t wait 5 months to treat this because I have persistent & around the clock symptoms. Plus I don’t understand any of this so I worry about permanent nerve damage or possibly moving into a progressive phase of the disease before I even see a doctor for treatment? Is this typical? My insurance won’t cover without a referral? What do I do?
Hi
. The lack of neurologists is incredibly frustrating. There are a few things you can do. You can call around to the neurologists in your area and asked to be put on a cancelation list. You can also reach out to neurologists outside your area until you find one who is taking new patients in a more reasonable time frame, and then ask your doctor to make the referral. We have members here who have flown out of state to find good neurologists. The National MS Society has a tool for finding MS specialists in your area, but you can also use it to find neurologists in areas where you have friends or family you can stay with if necessary. Here is a link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. Is your primary care doctor at least treating this flare with steroids? If you doctor can help you with this flare and refer you to the appropriate resources, like physical therapy, it probably won't do a lot of harm to wait until May, but you do need some treatment now. I am really glad you found this community. A new diagnosis can be so overwhelming. It can help to have support from people who have been where you are now. Here is an wonderful article from one of our advocates with some advice for the newly diagnosed: https://multiplesclerosis.net/living-with-ms/a-few-thoughts-for-the-newly-diagnosed. I hope it puts you at ease a bit. Please know we are here for you throughout this journey whenever you need support or a place to vent. Keep us posted if you don't mind because I will be thinking of you. Gentle hugs. - Lori (Team Member) Thank you so much for that response. I will look into these resources! My GP is frustrated as well and has mentioned that he intends to make multiple other referrals to find a neuroimmunologist that has availability sooner. He mentioned that one hospital group in particular is generally more responsive so we’re going that route immediately. He also mentioned the option of low dose prednisone. I actually see him tomorrow. But I think I was just surprised that the hospital released me without a clear pathway for treatment. And I’m glad I found this resource because I’m discovering quickly that the responsibility falls squarely on me to find help and people and communities like this are a great guide! Again, sincere thanks for taking the time!!!
I am glad you found us, too, and thrilled that you have such a caring and responsive doctor,
. You might want to consider the low-dose prednisone at least until you can see a neurologist. It's never good to take steroids long-term, but it should be okay for a few months and it will probably help you feel more like yourself again. I hope you have a wonderful new year despite it all. - Lori (Team Member)
