This Is MS Multiple Sclerosis Knowledge & Support Community

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Thanks for the post Bob.

I will admit that I am quite unsure of my future at this time. Everyone here at the hospital has tried to reassure me (even with out asking, but trying to help...you know) that everything will be alright and I'll lead a normal life with the drugs. I think I'm optimistic....I've seen worse working in healthcare - it can ALWAYS be worse.

However, I've already altered my life. I was in the process of house shopping before my first attack. I've spent the last couple days worrying about not being able to work and I've pretty much convinced myself to buy less of a house than I had planned to. I'm going to tell my realtor to look for cheaper homes. I just don't want to get a home I could afford before, but then have another huge attack, be out of work again and not be able to afford my new house. And with the costs of meds...etc..I'm re-evaluating most aspects of my life now it seems, while not trying to panic, but prepare if needs be. I like to have my bases covered.

It's so ironic....my brain is f'ed up....but the damn thing will not turn off now - thinking about, worrying about, running scenarios...about my brain not working. <insert nervous laugh>

Happy 2008 to all!

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Another question....

It's 12:38am 01/01/08 and I just had a glass of champagne to toast the new year with friends and family....should I avoid alcohol with MS? Again I'm learning....

I didn't cut back at all until my dizziness and bladder problems kicked in. I don't think it "harms" our MS at all. I think you just have to decide if you can live with it. It makes me dizzier, which is bad. It also makes me up all night peeing, which I already do, but this makes it markedly worse for me expecially since when you have a few you need the sleep. So the answer is probably the same with anyone. If it feels ok and you can handle it, do it!

I really miss drinking. I LOVE beer and wine. I have a pretty stocked cellar and my wife and I joke how my MS is making her a drunk. We bring up a nice bottle and I have a glass and she has the rest of the bottle! I will allow myself pretty much one beer or one drink or 1 glass of wine only because drinking usually happens at night and I usually quit drinking all fluids now by 8 or 9 o'clock. So I totally think it's personal. If you don't have bladder and dizziness issues, why not?

Hi Chris
I had nausea and vomiting, but not diarhhea at diagnosis. A lesion was affecting my inner ear and I was very nauesous.

Decision-making is really difficult when newly diagnosed. I decided to not do a masters degree and just go for a diploma (regret doing that) and not to buy a house myself (regret doing that) and not to have children (but now 9+ years after diagnosis I am 7 months pregnant!). Everyone's different but I "played it safe" for too long after diagnosis - but perhaps the stress of not doing that would have been hard too.....

Oh and I never cut drinking out - I curbed the kind of wild partying of my 20's though coz that was unhelpful but people often do that as they get older anyway. I find moderate drinking actually helps my bladder problems - seems to relax it and I get a good nights sleep. The only time I avoid it is during active relapses (and now when pregnant obviously!) when it seems to have a very bad effect on me. Rest of the time I enjoy a few glasses of wine a week but don't drink more than 3 nights a week. A little bit of what you like....!

Thanks for the comments everyone.

I don't drink very often...usually when out to eat or something, but I was just curious.

Good luck w/your new baby wonderfulworld!

I called my Neuro today...scheduled to see him at 10am tomorrow morning. I'll tell everyone what he says.

Well I saw the Neuro today...good news is that most of the lab tests from my LP were normal. The only abnormal was high protein/mylein. The neuro was suprised to see the LP levels much normal than he expected. So he said I'm 50/50 with MS now. He thinks everything is just starting (positive MRI, high protein, MS symptoms....but low over all LP levels).

I was referred to the the MS Clinic at the Univ of South Florida in Tampa. I'm scheduled to see them next Fri 1/11. I'll keep everyone updated.

The neuro gave me all of these sample information packets...big "dvd holder" looking packets....even a over the shoulder mail bag with dvd's and info in it. Two of these look like the manual for car! He wanted me to review everything to start making a decision/educate on treatment. I'm so afraid of how much all of this is going to cost seeing the obvious money that was spent to advertise all of these treaments (Betaseron, Avonex, Rebif, Apokyn). How much does everyone pay with insurance for treatment?

PS: Does anyone on here work with a Dr. Brock (whom I'm scheduled to see) at the MS Clinic @ USF Medical Center in Tampa? I wanted to get some feedback on him.

that sounds like some slightly better news! it's true that not every patient has the o-band results in the LP. just like pretty much every other "test" for MS!

coomoob wrote:The neuro gave me all of these sample information packets...big "dvd holder" looking packets....even a over the shoulder mail bag with dvd's and info in it. Two of these look like the manual for car! He wanted me to review everything to start making a decision/educate on treatment. I'm so afraid of how much all of this is going to cost seeing the obvious money that was spent to advertise all of these treaments (Betaseron, Avonex, Rebif, Apokyn). How much does everyone pay with insurance for treatment?

I realize how overwhelming this situation can seem. Doctors have put the decision on which medication to use onto the patient. For many without a scientific background it's an extraordinarily difficult decision to make. The marketing materials from the different companies all tend to state that their drug is the best thing since sliced bread and therefore tend to not be too useful. What I found most helpful was reading the Dr's Prescribing Information pamphlets for the different medications. Unlike the marketing materials, these tend to stick more closely to the published information and, if I remember correctly, the language they use has to be approved by the FDA. When I was diagnosed I was in a similar situation with the ABCs. I had all these glossy pamphlets which provided little specific information. However, I discovered quite by accident that each pamphlet had a compartment that was almost hidden and inside these compartments was the Dr's Prescribing Information literature for each of the drugs. I devoured this information with a vengeance. Even with a scientific background, I found that I still needed to use a medical dictionary for terms that I was unfamiliar with. During this process, I even discovered some information about Copaxone which my neurologist was unfamiliar with (I guess that some doctors don't read this stuff or can't remember all of the details). Anyways, this is the process that I continue to recommend to new patients, i.e., digest the information in the Dr's Prescribing Information literature and you will be able to make an informed decision which is one that you'll likely wind up being happy with years down the road.

I've discussed my experience making this decision in several other places for which I've provided some links below. I hope that you find them helpful. Note that if can't find the Dr's Prescribing Information among the materials you were given, then you can always find them online, e.g., http://www.avonex.com, http://www.tysabri.com, etc.

This link is for a newsgroup discussion which was on Copaxone. I posted a couple of articles in it about halfway down the page. I don't have any personal experience with Copaxone, but it would be a good place to read about other's experience.

On the second and third pages of this ThisIsMS thread, I have posted some data from the Dr's Prescribing Information literature from both Avonex and Tysabri.

Here's another ThisIsMS thread in which I posted some helpful information on deciding which medication to go with.

Here's yet another post to the forums.

OK, one last thread to reference since this one mentions a couple of books which you might find informative (not with medications specifically but with MS in general).

NHE

Hello comoob,
I've only ever heard of constipation as a direct result of MS, not diarrhoea, although if you have an impacted colon, (severely backed-up constipation), it is possible to get bypass diarrhoea where liquid flows past the blockage. Loss of appetite is also commonly associated with these symptoms. You are reeling from one of the most devastating blows a person can experience: being diagnosed with MS, so it's not surprising your gut would react to all the stress and worry you're going through. Of course, having MS does not make you immune from all the bugs and ailments that can afflict anybody, so it could just be one of those making a spectacularly badly-timed appearance.

As for alcohol, I don't think moderate amounts will do you any harm. Drinking to excess will of course kill off brain cells anyway, and you want to keep hold of as many as you can, but don't let MS take away ALL of your pleasures if you can help it. My experience was similar to Loobie's: alcohol began to take the pleasure out of partying because it made the dizziness and bladder problems worse, so I made the decision that I'd rather keep on socialising than drinking. At least that way MS hasn't won completely.

I think you're being very sensible in re-evaluating your plans, but don't be in too much of a hurry – you've been knocked off-balance at the moment and you've got a lot of information and emotion to process – give yourself plenty of time.
Few people understand what the reality of living with uncertainty is really like: they say things like, "well, everything's uncertain: I could be hit by a bus tomorrow", but the fact is we already HAVE been hit by a bus, and the damn thing's preparing to reverse and drive over us again. And again. And again. And again. Maybe tomorrow… next week… next month. It makes me want to say to them , "How's that for uncertainty, wise guy?" . I'd like to see them try and plan the future when it's on such shaky ground.
But you will, eventually, make some plans and decisions; trying to take into account as many ifs and buts as possible. WW's post is testament to the truth of the old saying, " you never regret what you did, only what you didn't do", and I've tried to live my life by that.

I was intrigued by what your neurologist said about " everything just starting": since nobody knows what the beginning of MS looks like, I wonder what he meant by that?

WW,
I hope your pregnancy is going well. You're in that mythical third trimester, so have you noticed any improvement?

Bob,
I'm trying sooo hard to resist making a comeback on your EDSS comments, except to say that I think it should stand for, " Every Day Something Shitty",

Thanks for the posts everyone. I must say that I have adopted this forum as a second home as of late. It's great to chat with folks that unfortunately have been through the same issues I'm going through with now. I do appreciate all of your feedback, as it is has helped a great a deal!

NHE...I work in medicine and have to the Micomedex here at work...which has all of the information that you mentioned as being in the "secret compartments." That information has been a god send to me...as I've just been diving into the internet and library here at work trying to learn as much as I can about MS....especially the treatments. The corporate materials that I mentioned getting are...just as you said...sales tools. They kind of piss me off because they provide no real information other than what drug uses what number of shots and where. However, they will make great DVD/CD cases once I clean all of the sales crap out of them.

TwistedHelix....my diarrhea and loss of appetite have pretty much resolved themselves. As all of you have said, I think that it was all stress related. Most of my initial symptoms have resolved themselves as well. The left arm is almost normal...still feels....odd is the only way I can describe it. I love your analogy about the bus...that's so true. Hopefully the bus driver keeps going. I was startled enough from the first hit.

What does everyone pay for their meds with insurance...if your don't mind me asking? No one can answer that for me with my insurance or Dr's. I know they have to be just outrageously expensive...seeing all of these sales materials the Neuro gave me.

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WW,
I hope your pregnancy is going well. You're in that mythical third trimester, so have you noticed any improvement?

Thanks Dom for asking....pregnancy going great, but funnily enough I have had the return of the maddening right-hand-side of my body roving itch - so the MS is not entirely quiet, but I can certainly live with an itch! Before I got very big, in 2nd trimester I noticed my walking speed had increased greatly, and I had good mobility anyway. But now it's slowed down again just due to sheer bulk and breathlessness.

Have to make a decision about post-birth meds now....wish I could just stay off the whole lot of them, but I need to choose Copaxone or Tysabri.....sorry for hijacking the thread!