Newly Diagnosed, starting on Aubaugio - looking for feedback

Hi there!

I'm new to this forum, as well as new to MS. I had my first recognizable attack on Feb 2 of this year and an official diagnosis just last week. I've read that some people wait years for a diagnosis after the onset of symptoms, so in that aspect I feel very blessed. My symptoms started with the L'Hermittes sign I guess due to a large older lesion found at C3. I do have 10+ lesions in the brain, one active, and positive CSF markers. I did three days of steroid infusions, which seemed to make my symptoms worse - my vision is more blurry, and I get numbness/tingling all the way down my legs when I walk "far" (like from my work building to my car) as opposed to just my waist and arms. What's the longest you've had an attack for, or should i just bet on this being my new normal?!

My neurologist started me on Aubagio last week (waiting for it to come in the mail)- and she didn't talk to me about side effects, monthly liver function tests, TB tests, possible hair thinning, dangers to pregnancy - nada! I did my research online and I'm a bit apprehensive on starting this newish pill. So I was hoping for some feedback on various medications from this community. I'm guessing they want to start new diagnosis on a pill hoping for better compliance? But i'm an RN, so i'm okay with giving myself injections if that is the best option for delaying my progression!

I also see a doctor at a wellness clinic who is more in line with helping me choose the right supplements, healthier eating habits, essential oils, etc. My neurologist said "there is no evidence that Vitamin D helps MS patients - just take a multi vitamin" - So right then I decided she's not the doctor for me. I'll be looking for a new neurologist in the North Dallas area if anyone has recommendations =)

Thank you for reading my post!

Hi feelingbuzzzed,

Sorry to hear you received a diagnosis of Multiple Sclerosis.

It's possible the symptoms you're experiencing after steroids is simply part of your current exacerbation (relapse, attack, flare-up) and would have shown up even if steroids weren't used. It is possible for you to feel worse on steroids before feeling better.

The length of an exacerbation and recovery is different for everyone. My severe exacerbations would last 4 to 6 weeks, with and without steroids and recovery would take approximately a year. Recovery for me was mainly about trying to regain my mobility. My milder exacerbations lasted approximately 2 to 3 weeks and recovery took about a week or two.

It's very common for me to walk and once I stop, notice vibrations/buzzing/tingling in my legs. I guess it's there while I'm walking but I have always noticed it when I stop, this is due to spinal cord lesions. I have Lhermitte's sign and get vibrations/buzzing from the waist down when I bend my head down. I have had Lhermitte's as a permanent symptoms for 32 years.

It's perfectly normal to have abnormal sensations when you have Multiple Sclerosis. Once you get used to some of the sensations you might find you can ignore them...for the most part

Remission, in MS, are either complete (no symptoms) or partial (residual symptoms) with partial being the most common.

Vitamin D: I agree you need a new Neurologist. It's important to have a blood test to check your D level before starting D supplements. Those with MS should have a D level at the higher range of normal. Some with MS don't notice any difference others do. There is information out that if you are D deficient or on the low end of normal you are at risk for more exacerbations ---- I don't know if this is actually true or not, but it's not true in my case. When I am in the low normal range or deficient I am more physically weak, when my levels stay somewhere between 70-80 physically I do better.