RW, I am not a doctor but more than likely your Ok if it's been this way for years. Dark urine is usually a sign of not getting enough fluids but some foods, meds, suppliments can cause it too. Jim has darker urine but it's from the macrobid.

Hope that helped.

Natalie,

Sorry to hear you are going through this!

My advice about your Tysabri infusion is the same as everyone else's. Tell the nurses what you have been through and the results. Have your doc fax the results over. The infusion center will talk to your neuro and he will have the final say.

Don't take chances with your health for your infusion. You can have it later if nothing is wrong. Get whatever is going on diagnosed and cleared up. It may be neurogenic bladder. It may be something else entirely. Figure out what it is and don't worry about being a few days late on the infusion. Worry about your kidneys first.

Peeing is a BIG DEAL!

RW, in your case, it's all that rum and coke. I wouldn't worry about it!!!

As Sandy said, dark urine usually means not enough fluids. But you drink like a horse so it's got to be something else. If you have regular UA's and no one has said anything, then you're probably ok...but with you? Who knows!!!

hi nat,

i agree with the others.
i hope your infusion goes well on monday.

you might follow up with your neuro or pcp to rule out bladder issues.
it can be common to have bladder sx's with ms.

keep us posted.

I got my results online in their system (which is pretty cool by the way--you can track and graph multiple tests results). I called and left the nurse a message and she didn't return my call. Ergh!!! I wanted to know what the next step was and to ask about the Ty. infusion on Mon. But no response. My urine test results are in the MS clinic's system already since I went to their lab.

Cheryl This will really get you going...the infusion nurse does not ask questions before I get the Ty. I was shocked. I get Ty. in an infusion room with 4 chairs inside the MS clinic. When I went the first time I asked him why he didn't ask me the questions. He said, well I can read your chart and see that you don't have anything serious going on and I know all the answers to the question are "no." The problem is, what if you get treatment by your primary care doc. or someone else and that info doesn't get faxed to the MS clinic? Or any other strange scenario. I'm getting ready to write a letter to the director of the clinic to complain about this lapse in protocol (you know who the director is) and explain how it doesn't reassure me or give me trust in the treatment I am receiving while on Tysabri. I see a psychologist that works with MS patients. She told me that some of her patients have complained about the nurse not asking questions either. This is seriously bad, right?

RW Thanks for reminding me that I shouldn't take chances with my health and the infusion and that it's no big deal being a few days late if something needs to be resolved. Because this is something I would totally worry about!! All of this is still new to me--the diagnosis, the symptoms/infections you can have with MS, and being on Ty. I guess you learn as you go along in terms of taking care of yourself properly and not beating yourself up too much. And yes, you don't realize how big a deal Peeing is, until you're having problems!!

Nurse Nancy Yes, I will follow up about this. I'm pretty sure it was a UTI since my urine was extremely cloudy for awhile. I had some bladder test done at the Mayo Clinic 9 months ago and it didn't show any problems that would be MS related (but who knows, you can always develop new stuff, right?)

Can I just whine a little though??! UTI's are so uncomfortable!

Part of my problem is I've only had the MS diagnosis for 14 months. I think I am still in that hypervigilance state where you focus on every little thing -- it's "oh my god, something is going on in my body, is it MS related, is it something else, will it ever go away, what does it mean, am I just imagining it? blah blah blah). I'm trying to be zen but feeling a bit anxious. I don't think learning about that new PML case yesterday helped any.

*smack*

Toldja I haven't had a drink in weeks! I had one three weeks ago and didn't even finish it. I don't know what it is, but the desire is totally gone, although if I had some free time I bet I could get it back...

What's a UA?
Regular? I don't do regular.
I haven't had a physical in at least two years. I had my first Pap in two+ years last week (and it came back clear BTW), I am mammo girl Dec 1st, I am doing that pelvic ultrasound thang sometime in Nov (and yes I wrote it down!) and I am TRYING to find another PCP, but still haven't settled on one yet.

I may just head up the road to the clinic and have the guy there do a physical so he can check out my spots on my leg, but there's nothing WRONG with me. I went through the clinic this summer when I was hanging with Sam&Ella, but other than that...nopie, nothing, healthy as a horse, regular HB and BP, respirations normal, temp. normal, good skin tone, no aches and pains outside of spazz stuff and mens. cramps, eyes clear, etc...except that now I have the twitchies in my stupid eye again...argh.

I should lose some weight, and I should quit smoking, but I have to have SOME sort of vice!!

Urinalysis.....

It is 100% against the TOUCH protocol. I would remind them on Monday when you go in that they are a TOUCH certified infusion center. The TOUCH protocol is to be followed each and every time for each and every patient. They will lose their certification if they do not follow the protocol. Biogen will DE-CERTIFY them if they find out. AND THEY WILL FIND OUT. All it takes is one phone call....If they are gun decking the paperwork, they can all lose their certification and so can the Neurologist. He will lose his ability to write rx's for Tysabri. Are they all willing to put him in that position b/c they are lazy???? Ask them that question.

Dumb dumb dumb....

Flygirl is correct. Hold them to every step of the TOUCH protocol. Remind them that it's required.

I had one nurse who didn't ask the questions. I reminded her that it is MY health that they are protecting, along with their certification. She makes sure she does every step now when she walks into my infusion room, and I watch her like a hawk when she is the starter nurse.

I am not even allowed to leave the infusion room until my hour of observation is up. I sit right there and wait, no matter what. I had a neuro appointment one time and it was halfway through the observation hour and the nurse called the neuro and told him if he wanted to see me at 3:30 he would have to come to the infusion room because she was not letting me leave...

He changed my appt. to 4 PM.

Simple fix from my MD to prevent UTI...1.5 tablespoons of Apple Cider Vinegar daily. It keeps the bladder ph from going acidic. This keeps UTI from happening.