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Update: RRMS and Rebif

Hello everyone! I hope you are all doing well today.

I went to my follow up with my neuro today and have been moved from CIS to RRMS. Kyle, if you are reading this he corrected himself on the space and time thing you speculated on in a previous post. My exam still showed abnormalities but they are much better than the last exam two weeks ago and this time he was unable to make my eye muscles go crazy, so good news there. He is starting me on Rebif and the nurse said the paperwork will be submitted today or tomorrow and I should hear back from the MS LifeLines nurse no later than Monday. The Dr believes at this point based on descriptions and the absence of any EEG findings that the seizures are not epilepsy but related to the MS so he is not concerned with the seizure warnings. I will play it smart though and keep someone with me and not drive until I know for sure if this is going to be an issue. If anyone has advise they would like to share on Rebif I would be very much appreciative.

My primary has since taken a crash course on MS, Im only speculating here cause thats what it seemed like, and has made some changes and holistic recommendations to "keep my brain function in peak form". He is upping my Vitamin D to 5,000 units daily when I finish the 50,000 unit next month. He also wants me to start taking Liolic Acid daily. I had no clue what that one was so I looked it up and I guess it may help with MS progression. He also recommended I start a supplement called Brain Sustain which was developed by a nutritional neurologist that specializes in MS, Alzhiemers and Dementia. He also wants me to start Yoga (I was already planning on it) and research nutrition in MS and make appropriate changes. Is anyone taking either of the supplements above? Any advise on the nutrition part?

I want to end by saying if I have to belong to a chronic disease club, I am glad that I am in it with all of you! You have all been fantastic, extremely helpful, and supportive. I can only hope I can join you in assisting you all and others in the way you have assisted me!

Time to pick up baby girl! :)
Best Answer
987762 tn?1671273328
COMMUNITY LEADER
Oh baby.......i love your neuro's attitude :D and he's got a sense of humour too, can you box him up and ship him over or at least clone him because humorous neuro's are becoming a rare breed, he's definitely a keeper!

Kidding aside, HUGS on your "upgrade" to RRMS, naming the beast is an important beginning, working out what MS mean to you Trish the individual, is equally important for this journey you've found your self on. Your LP nightmare is telling, you've obviously been made tough and i'm sooooo not surprised to hear your a tad stubborn too but please make your self a note......Sometimes it's better for 'me' to ask for help than it is to be stubborn!

Hugs! Hugs! Hugs!............JJ    
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Avatar universal
I have heard many people praise L-Tyrosine for energy, clear thinking and overall sense of well-being. I did do some research on it and have concluded it falls into the 'can't hurt' category, so that's encouraging.

I have had some for weeks and weeks but want to wait till this endless flare is finally over to try it. I just somehow want to be at my normal, or what now passes for normal, to experiment with any supplements. I think I'll then have a better idea of whether it works for me.

ess
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Avatar universal
Good morning LuLu and Corrie! Thank you for your response :)

Corrie, Yes it does seem a bit silly to my logical half, but I am going to do my best to hang onto the positive feelings and deal with then discard the negatives :). Thank you for the advise and well wishes on the Rebif. MSLifelines just called and interrupted this post actually. I wish you the best of luck with your Tecidera!

LuLu, Thank you! I really like that my Nuero is so...human, lol.  If he has an ego, I haven't found it yet.  I have not yet started or ordered the supplements my PCP ordered as I wanted to check with my other Doc about them first. The Vit D was, and has been, agreed to. As for the Brain Sustain he actually took the time during our visit to research it a little and he said it certainly won't hurt and it is likely the formula will help with brain fog and fatigue so I will be ordering that one soon. The alpha lipoic, locoic, whatever acid looks as though it may have some very promising implications for us but there has only been 1 very small and short human pilot study on it so far (multiple mice studies with the experimental induced animal form of MS, can't remember the name right now) and I feel more comfortable waiting for more information.

Thanks for the link, I will take a look at it. I really hope your foot gets better soon! I will send healing thoughts your way.  :)

Helpful - 0
572651 tn?1530999357
Hurrah for answers, although it stinks you have MS. It sounds like this neuro is a keeper - i like ones who say they don't know everything and are still learning. As for the PCP, it's nice to hear there is interest in helping you, but please go slow on the supplements until you have a chat with your neurologist.  


That said, I am waiting on my supplements to arrive - it is one the podiatrist recommended I take to try to aid in healing my foot.  Perhaps I will get the added side effect of feeling a bit better.    If you're interested in reading about it, their website is http://nephroceuticals.com/cardiamin/nutritional-information

good luck with the Rebif - it is a good drug and I hope the right one for you,
Laura
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Avatar universal
Hi Trish, and welcome to the club! It seems silly, doesn't it to have that relief of knowing? I felt the same way but it does have a way of creeping up on you now and then with fear or frief, sometimes both. You sound prepared but that initial phase, for me anyway, between dx and starting a DMD was quite a roller coaster ride.

I took Rebif for a year but just switched a few days ago to Tecfidera. Rebif was a good drug for me but I was tired of fighting with the spasticity in my arms when it came time to hold the auto injector. I hope it goes well for you.

Take care,
Corrie
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Avatar universal
Quick note first: I accidentally hit the best answer thing which I never do because all answers are the best :) That being said....

He is pretty awesome and I consider myself lucky to have found him :) I passed his number on to another member that lives in my area of Michigan already; I hope she does as well with him. I would clone him and his staff for everyone if I could!

I probably would have looked at you like you were crazy in the past if you would have told me one day you will be happy to be diagnosed with MS  but I feel settled, relieved and even happy. I no longer have to wonder what is wrong with me. As I told another, giving this thing a name has allowed me to move from my medical issues defining me to just being a part of who I am now; what makes me Me. As you know I have had my fair share of freak out desperation moments over the last few weeks (years really) and I am sure Ill probably have a few more before I move on from this world but as I will never belong to IT again; I OWN it now :) You, Ess, Kyle, Karry, LuLu and several others have really helped me develop my resolve through your support, encouragement and the occasional needed kick in the butt I needed and I can't thank you enough! (obviously, lol)

Lesson TOTALLY learned on the stubborn thing! No worries there, ok so knowing me maybe a little, feel free to knock me in my noggin in the future when I get stupid :-P  But I will ask for help when I need it and slow down when, no before, I need to from now on. I think I mentioned before I own a security company and we have our largest event of the year coming up and I already ordered a dedicated golf cart so I am not trying to walk too much and an area I can go to with the AC blasting so I can cool down. :) see, progress!

I hope you are having a great day!

Hugs! Hugs! Hugs! back :)
Trish
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Avatar universal
Oops! Lipoic a Acid, not liolic. anyone hear of or take this one?
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Avatar universal
Hi Ess!
Thank you for responding! :) you are absolutely correct about the LP and my experience with it. Anyone reading this PLEASE do not refuse this test based on my experience but rather learn to not take no for an answer IF you should develop what I experienced! My dr actually told me today that mine was one of the very rare extreme cases and that he believes his technique was to blame and caused a tear in the dura by having me lie down once the needle was inserted. As a result he is now altering his technique in all patients that do not require pressure readings. I also put this information in my post about the ordeal.

I am already pretty impressed with this Dr but that he said this to me made my level of respect for him jump a few more notches. Plus he's funny, that always helps!

The research I found on liolic acid, btw I am now questioning myself if that's the right name, was very interesting. I'll see if I can find it again and link it in a new post for everyone. Thank you for the Vit D level, I did not know what normal was only that mine was either 9 or 11. Doc said he will be testing it and the B's with the liver tests I will need every 6 months for the Rebif. I have a follow up 6 weeks after I start it, "unless of course you need me sooner".

Enough about me now :)  how are you feeling? Did you get any answers yet on the sojourn's?

Hugs!
Trish
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Avatar universal
Oops, must have hit post.

There is no scientific evidence that diet helps with MS. I don' t see how it can hurt though. Have never heard of liolic acid or Brain Sustain, but then again there are still a few things I haven't heard of  :-)  Many or most neuros urge vitamin D, and your testing level ideally should be in the 50s or a bit more, Please have this tested periodically. Yoga is good, for stress management and overall well-being. Possibly you'll need to adapt somewhat, but that's okay. Do what you can.

ess
Helpful - 0
Avatar universal
Hi Trish. I read about your horrible post-LP experience, and I cringed and cringed. I admire your resolve in showing up at your neuro's office, and only wish you'd shown up at an ER or at the LP procedure place several days earlier.  

Your ordeal is about the worst I've ever read, and I've read about a lot of them. But for those people who are planning an LP or scheduled for one, I hasten to say that this experience is very rare. And in fact, the big majority of people just sail through it. Me, for one. I went to the hospital, had the LP, lay there afterwards for an hour or two. Then got up, drove myself home, and resumed my life. No special precautions at all, and no caffeine. A lot of this depends on the skill of the doctor doing the procedure, and thhe use of flouroscopy for t

Anyway, welcome to the club! I'm glad your PCP is taking such an interest.
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