Newly Diagnosed, starting on Aubaugio - looking for feedback

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feelingbuzzzed
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/10/2017 4:50 PM (GMT -6)   
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!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3506
   Posted 4/10/2017 6:51 PM (GMT -6)   
Hey buzzed,

I'm sorry to hear of your recent diagnosis !!! And I agree, ditch your doctor. D-3 is considered critical! That's my opinion anyway. I take 5,000 IU a day. I still can't get my levels above 50. Oh well.

I can't give you any personal feedback on aubagio. It does have a lot of extra testing and monitoring. I've been on copaxone for 11 + years. I find the shots to be a non-issue really. No real side effects for me. A bit of heat/pain and itching but nothing to that bothers me. Some do not like it. Some do have side effects. I've done well on it. I still work full time. I'm not at all motivated to try any of the new meds due to how well I feel I am doing.

Call the MS society and get the number for your local chapter. They maintain a list of MS specialists. Start looking for a new doctor. Tell the society that you are newly diagnosed. They will have ways to support you.

I'm sorry the solumedrol didn't help. I'm not a fan. While it did lessen the severity of my MS symptoms, but it came with its own really awful side effects. I won't do solumedrol anymore. It doesn't help with any long term management.

Keep us posted. Ask lots of questions.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 209
   Posted 4/10/2017 7:12 PM (GMT -6)   
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 smile

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.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

feelingbuzzzed
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/11/2017 7:09 PM (GMT -6)   
Thank you both for the responses and sharing your experiences! I will definitely get my VitD levels checked with my next set of lab work. I've signed up for a lunch in learn in the area so hope to make some connections there and maybe a good neurologist referral.
Have a great week!
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