Dx, Steroids, DMD decisions

[vamanos]

Wow. Last week was nuts.

I do have ms (confirmed suspicions via MRI, diagnosed last Thursday) and at this point, my neuro says it is RRMS.  None of this surprised me--I knew it was ms.

I have a couple of dmd's to choose from, but avonex seems to be the one I might pick. I do not have the mental strength to think about this stuff right now...I think I am ms'ed out. He gave me baclofen and provigil for some of my sx.

I saw my rhuemy last week too--He said I am in a bad lupus flare and put me on steriods (a prednisone taper)

I asked him how come they did not think my ms-like lesions and sx were lupus.
He said CNS lupus is aggressive and quite harmful/deadly--that what I have does not look or act like CNS lupus at all. I guess it can be called a mimic, but a clinician would have to be very dense to call cns lupus ms.

He told me he has several lupus patients with MS--that it is not that uncommon! Wow!

My rhuemy put me on steroids, and wouldn't you know...my lupus and  MS sx are greatly diminished! I have this horrible burning sensation between my upper lip and nose....if only THAT would go away. It is horrible.

[jibjen]

Hi there,

AS with the others, welcome. I do agree a dx. of MS can be overwhelming, wether you expected it or not.

I knew for me, even though I knew it was MS, the official dx. was a bit of a reality check for me.

I too am on meds for my symptoms and did ultimately choose Avonex as a DMD of choice for ME...I have to say that I have had no problems on it but of course everyone has to decide what is right for them.

I have been taking it since April...1x a week...

I wish you well and am glad you have found this forum..This was truly a blessing for me to find a place of support, reassurance and just a simple place to ask questions and feel a sense of belonging when things seem out of sorts for me. Great members here, in case you have not noticed (wink, wink)

I am sure once you are settled and more focused, you will be able to choose.

JibJen

[Guitar_grrrl]

I see no problem waiting until you're done with your steroid course to make any big decisions!  One thing at a time!

I wish you luck on Avonex.  I know lots of folks have had years of success on it.

Sorry, but welcome to the club!

[anon07072023]

Yep, you knew it all along - You DO have MS.  It's good you have the diagnosis now, because then you can start taking a DMD, like you were saying.  

I'm glad that they prescribed some meds for you to help with your symptoms.  Baclofen works good for me - I only wish I could take more (I'm maxed out at 80mg/day). You'll have to let us know how the Provigil works for you - I've been wondering about it. I'm on Amantadine for the fatigue - and I'd like something better.

It sounds like you have a good neuro.  Glad to hear the steroids are helping you.

[sllowe]

Hey Vamanos,

Soooooo glad your questions were answered. What good doc you have to state things so simply, and with such confidence. That must of been reassuring.

Do take your break - I'm sure you need it. Once the Avonex is ordered, you can start on it in good order. Hope it serves you well. You are on your way toward treating the beast :)

Hopefully the burning will subside over time, maybe when this relapse simmers.
(((Hugs)))
shell

[Lulu54]

I always hate to say 'welcome to the club' but you know you are now a part of a much bigger group of people who live with chronic disease.  It is not unusual to have more than one autoimmune disease - another common combination is rheumatoid arthritis and MS.  

One drug over the other is not necessarily superior - it all has to do with what dosing schedule you prefer and how your body will react to a certain DMD.  Avonex is a great one to try - I hope you have success with it.

As for the steroids, I haven't noticed a difference in cognitive function while I am on the mega-doses for a relapse, just lots of energy and lack of sleep. It appears everyone reacts differently to the steroids and I imagine you are on a much lower dose for your Lupus.  And it is possible you may be on a long-time regimen of steroids to quiet the lupus.  

Again, I am sorry you have MS but am very happy you have the answer to what ails you.

Lulu

[Ricobord]

You must feel relieved to have a diagnosis, especially since you knew what it was. That is great news that the steroids helped you feel better!  

[HVAC]

Lupus was ruled out for me by an anti DNA test which came out negative for Lupus even though I had a high ANA and 12 0-bands in the CSF and not the blood. I would probably wait until I am calmed down on my Lupus Flare and off steroids before I make decisions about which DMD but that is just me. I can't make decisions on steroids. You have to live with your decision of which steroid so I would make sure I am in good mental shape before I make that. I am not sound on steroids.

Steroids work on inflammation and can help Lupus, MS, Cancer, or anything with inflammation. They do a number on most folks brains. I do not make any decisions while on them. Picking a DMD can be important and it does not have to be done immediately. It is not as critical time wise as picking a cancer treatment. I would not make that decision on steroids either, personally..

Alex